Next week I am meeting with a group of oncology Fellows at Sloan-Kettering to talk about care of the metastatic breast cancer patient. I have many ideas of how I think patients and doctors can better be “partners in care.” I have thoughts about how patients can be better in their interactions but this particular session focuses on the physician side of it.
I will spend my time there emphasizing the things doctors can do in their future careers that will be most appreciated by their metastatic breast cancer patients. Having a supportive, educational partnership is essential.
I have pages and pages written on what I think makes a good oncologist but am not writing about them here yet. I really want to use today’s post as a forum to let you have input. Patients vary in what they want from their doctors. There isn’t necessarily a formula that will work every time. This is part of the message. It is important to find the right chemistry between a doctor and patient especially when you know this relationship will probably be taking you until the end of your life. Some oncologists start to distance themselves from their patients when they know they can no longer “fix” them. I am fortunate that mine are supportive. The balance between quality of life and quantity of it instantly becomes the metric after a diagnosis of incurable cancer. Everything is filtered through this lens.
I encourage you to comment on the post rather than email me. Even if you comment as Anonymous or with initials or even using your diagnosis as your name… I think reading what others think is important for this one. If you feel comfortable doing so, please indicate whether you have metastatic cancer.
So, without sharing my suggestions I’m asking for your input. Feel free to use these questions as jumping off points. Answer one, answer more that one, suggest something I haven’t even brought up.
I am interested in hearing from you what you think about some of the following topics and please be as specific as possible:
What is your preferred method of delivery of test results (ranging from the initial diagnosis to routine followup bloodwork and scans and biopsies)? Some results are given when only the patient is present. How do you feel about that? If you are called and told to “bring someone with you” you would that make you even more upset? In regards to bloodwork, scans, biopsies: do you always want those results in person even if it means waiting longer for those results? Do you mind if the results are by phone if that gets you answers quicker? Do you want the doctor to “cut to the chase” or do you feel more comfortable with small talk first?
How do you want a doctor to respond if you get emotional when you hear bad news?
Do you mind if your doctor gets emotional when delivering bad news or discussing your treatment? Does that make you more upset/scared or do you think that shows compassion?
A new report showed that patients don’t like when doctors talk about their own situations to try to show compassion (“self-disclosure to show empathy”). How do you feel about doctors sharing their personal stories of their own cancer or medical conditions, that of their family members?
Do you like when a doctor admits that he/she isn’t sure which treatment option is best for you or does that bother you?
Do you like when your oncologist presents the one treatment option he/she thinks is best or do you like your oncologist to present a few choices and then you decide together?
Do you like when your doctor asks you questions about your personal life/family/interests? Does your doctor do this regularly?
Does your oncologist talk about your prognosis and if so, what are ways you prefer those discussions to happen?
Do you want a doctor to give you a life expectancy prognosis even though we know those estimates are right only about 20% of the time? Do you want them to discuss it only if you bring it up? Do you like to hear statistics about treatment success and odds of survival?
How much monitoring do you like? Does your doctor give you a choice in how often to conduct tests? Do you feel that tests get in the way of living the life you have left or do you need the results to know where you stand in your treatment?
What is the best way a doctor has communicated bad news to you? The worst? (having a few examples of what not to do can be instructive here)
In the metastatic community in particular there seems to be so much of a focus on treatment and the nitty gritty of all that’s demanded to just treat the disease week to week, month to month. That is only one part of managing it. Have you been offered counseling for services like mental health? Palliative care? Family services? Physical therapy? End of life counseling? Would you like those to be offered to you?
How important are things like scheduling, having phone calls returned, having ways to contact your physician/office that are reliable, even after-hours?
If your doctor asked you to fill out a questionnaire with some of these questions on it would you find that impersonal or an attempt to learn more about you and how to best help you?
Would you like your doctor to have printed material with general definitions of terms and words important to your care (drugs, procedures, tests)?
Would you like them to discuss support groups? Have you asked? Have you been told there isn’t one for your kind/stage of cancer?
And finally: If you could give young oncologists one piece of advice, what would it be?
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Thank you for your input. My advice on these topics could probably fill a book. I have a feeling yours could, too. I will try to address some of these topics in future posts.
By the way, I may not be posting over the next few days because of the Thanksgiving holiday.
As always, thank you for your daily support here, on Facebook and on Twitter.
Link to Twitter
1. The oncologist needs to be honest.
2. The oncologist needs to be a good listener as well as a good explainer.
3. When giving a metastatic cancer diagnosis, I feel the oncologist needs to find a way to offer hope for the future, even when the prognosis is poor.
4. The oncologist should not be in a big hurry when giving this kind of a report.
5. Be respectful of the patient. Don’t talk down to the patient. Learn the patient’s level of understanding and then talk at that patient’s level.
6. Compassion is a fine line. Be aware that you may be offering too much or too little.
I could not have said it better myself. So, ditto.
Hi Lisa,
My mom was diagnosed with Stage II Multiple Myeloma in July, and is preparing for an autologous stem cell transplant in January to hopefully put her MM into a complete remission (this is considered an incurable cancer, so we talk remission, not cure). As we talk about what is to come, she has expressed how disappointed she is that once this process starts, her regular oncologist will not be her doctor again until she is released from the care of the Transplant Team. I really like her oncologist, too (he’s young, about 38, but has a manner far beyond his years). He treats my mom with so much respect, listens to all her concerns and questions, answers the questions the best he can, but isn’t afraid to say “I don’t know,” when he truly doesn’t know. I asked her why she likes him so much, and she listed many of those same things. She likes that he listens without interrupting her, processes her thoughts and questions, and is very calm, measured, and compassionate. He explains things very thoroughly, sometimes drawing pictures or giving great analogies. He asks at every appointment how she is coping, and has helped her get into the Comprehensive Cancer Support Program, where she can talk to a counselor who is trained in all things cancer. I am grateful for the care he provides to her as a complete person–not just the physical. He asks about her life and she likes to tell him what is going on. He talks with her through the fear, and while he is certainly a wealth of knowledge, I really appreciate the fact that when he doesn’t know something, he says exactly that. Something else that she (and I) really appreciates is that if she has a question in the middle of the night (or day!), she will email him, and he will return the email the same day, answering her question, whether it is related to a test result, or something else. That helps to reduce her anxiety of having to wait until the next appointment or having to go through the nurse navigator (who is very nice, but takes longer to reply).
Wow…sorry to ramble on! I think if I could give just one piece of advice, it would be: Listen as much as you talk. It truly means the world to people who are scared and in need of your help. I hope your talk goes well!
Have a Very Happy Thanksgiving!
Christon (twitter: @barristernboots)
I so admire you for what you are doing. My father died of cancer when he was 48 and because I was 21 when he was diagnosed and 22 when he died, I was not a part of his care but from a distance. No one ever told me directly his diagnosis was terminal and I felt foolish for not knowing it until after he passed away.
Anyway, I don’t have “oncologist” specific advice, but I do have “specialist” advice and some examples of things said to me by midwives, perinatologists, and pediatric cardiologists that show what doctors should never say. For background my unborn child was diagnosed with lethal heart defects in 2002 and I was offered termination and hospice care three times for him and we’ve nearly lost him three other times, but he’s stable today. I know, I KNOW, that his prognosis is not great, but he’s doing well right now and will be here as long as he is here. So, it’s not apples-to-apples, but after 12 heart surgeries and four hospitals, we’ve met an awful lot of doctors.
Things not to say:
1. When a patient cries because of the enormity of the situation, do not tell her, “If you cannot handle it there are alternatives.”
2. When you tell a patient/family that hospice care is an option and they cry, do not tell them, “This isn’t easy for me either.”
3. Don’t ever tell your patient/family in a life-or-death battle that they are “better-off” than some other patient/family who has worse or no options. Doctors, some of my favorite even, do this ALL THE TIME to try to make you feel more hopeful, like – at least it’s not as bad as THAT – it’s bad enough. They must remember that comparing one patient’s circumstances to another patient doesn’t help anyone, it just delays accepting the situation for what it is and makes the patient feel ungrateful for a moment and angry for a long time after.
4. Don’t assume you know what a patient thinks or will do before they tell you. During my son’s birth the doctor, in a preemptive move to keep me from arguing about a c-section, said, “You can push this baby out, but he won’t be alive when he gets here,” which would have been unnecessary even if I was against c-sections. I wasn’t and his comment was overkill. He could have and should have been far more gentle because the circumstances alone were sufficiently harsh. Something similar happened to my father when he had to have a colostomy; no one wanted it but the hard sell wasn’t necessary.
So, it’s not the same thing, but it’s something. I’m sure it is very painful and difficult to deliver this kind of news, but the best rule of all is the one that’s been around for at least two thousand years – do unto others as you would have them do unto you.
Good luck and good work!
For heaven’s sake, don’t do what my oncologist did! As I sat on the exam table, waiting to hear about what was going to happen with me and my endometrial cancer, the oncoligist asked if I had been tested for the breasted cancer gene. Don’t panic your patients. Take one cancer at a time!
I had a routine gynecological appointment 2 days before my set lumpectomy/sentinel node biopsy for IDC. The gynecologist told me after I shared receptors from my breast pathology that I was “estrogen rich” & likely cancer cells are present in my uterus as well. I DID not need to hear that at the moment. I am 3 weeks post surgery & this week I head to a uterine biopsy. I don’t know what is the “right approach”. If cancer lurks in my uterus I need to know sooner than later, especially knowing estrogen drove my cells to become atypical.
Lisa – thank you for doing what you’re doing. I think it’s incredibly giving & brave.
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Remember I am a person; take the time to look me in the eye, and speak to me not at me. I could be your wife, mother, daughter, sister or friend. How would you want those you love to be treated if they were diagnosed with metastatic breast cancer.
As an oncologist, you have a very important job and are very busy, but please remember there is nothing more important to me than my health and you’re the person I depend on to guide me and I put my faith (this is hard) to do what’s best for me – this is a big deal. I want to be your partner in my developing my treatment plan. If you have a bad news or difficult news to deliver, I can handle it, don’t sugar coat but please don’t be dismissive, glib or disingenuous; this is my life we’re talking about.
To help me make informed decisions about my care, please explain things to me. Don’t assume another member of the team has talked to me about we’re discussing – ensure I have enough context. Ask me how much I want to know and direct me to the resources that will educate me and help me understand my diagnosis, prognosis and treatment.
Hi Lisa
I have metastatic breast cancer – diagnosed almost 3 years ago at the age of 40. Two young children (now 6 and 4).
My oncologist takes an interest in my personal life and will take the time to ask me how I am really feeling and am I getting the support I need. We have never discussed time lines re: life expectancy. I don’t want to know and she respects that. When a treatment stops working, she usually will run through a couple of different options and we can make the decision together. I pick up my scans myself so am able to read the reports before I see the Dr (except blood test results). I don’t know if this is a good thing or bad thing but at least I am able to prepare myself to ask suitable questions. When a patient talks about side effects, the Dr should listen and not say – “this has nothing to do with the medication you are on”. I was told this when I had radiation treatment and got nausea. I’ve had 3 doses of radiation now and each time I get nausea – don’t tell me it’s a coincidence! Everyone reacts differently. Get the oncologist (or if you are lucky like me, a breast care nurse) to put you in touch with palliative care and home based nursing – this has been a life saver for me and a comfort to know that I have many options for support. Very important to have access to after hours support – I can get this from my palliative care and home based nursing team.
Sorry for the rant and thanks for all you are doing Lisa.
I am not sick with cancer. But in terms of my interactions with doctors, I find it most helpful when they make an e-mail address available. It helps enormously to be able to put a question on paper at any time of the day or night. My doctor always answers within a few hours. I am very conscious of not burdening him and spend a lot of time on formulating my question in a very very short and concise way, which already helps with bringing a little clarity to the jumble of confusion and fear in the mind. And just knowing that emailing is a possibility calms me enough that I often don’t even need to follow through.
I think the most important thing is honesty in a Dr. and that they have patience with your questions. My primary Dr. is awkward, but I love him because he shows up and offers his opinion. No one Dr. has the answers. I wish they did. I just want them to do their job, in a professional way, but also in a ‘human’ way. They’ve chosen this field. I just want them to make the effort to do the best they can, as I do with my work & my illness. A partner.
Bless them, especially today!
I just started with my 3rd oncologist since my diagnosis with metastatic Breast Cancer in September 2012. I feel great relief to have finally found a doctor that I trust and feel comfortable with.
My first doctor called me with panic in her voice, which made me very scared. She gave me worst case scenarios without explanation, “well, if the skull mets are in the brain, we’ll just do whole brain radiation”. She was scared, I was scared. She had not recommended chemo 5 years before when I was diagnosed with Stage 1 breast cancer and had a mastectomy, saying that I was at a low risk for reoccurrence. Now that I had surprisingly showed up with metastatic disease in my pelvis and skull, she wanted to go full blown chemo without giving me a chance to understand and be a part of the decisions.
My 2nd oncologist was a young woman with 4 children, one a baby. When she called to tell me that the cancer had spread to my brain, she couldn’t talk because she was in the car with the baby. She told me to call a radiologist, again for WBR. I called a radiologist who looked at the MRI and told me that surgery was a better option for me, since I had only one (large) met in my brain. The radiologist arranged the surgery, and then the gamma knife radiation afterward. When I returned to the MO, she was aware that I had had surgery, but did not know about the gamma knife. I had to tell her about the results and the pathology reports, even though I know these things are faxed to her. I felt like I knew more than her, and I just read about brain mets on the Internet! She recommended that I take Tykerb now that the disease was in my brain, explaining that if it were her mother, she would have her take it. That was it.
Finally, I waited 2 months for an appointment with a breast cancer specialist. This woman spent more than 2 hours with me, going over every pathology, MRI and Pet Scan report, explaining to me things that I didn’t understand – like FISH scores. She has been a breast cancer oncologist for her whole career, more than 35 years, and says that my cancer is somewhat atypical and would like for me to see a brain mets specialist in Boston to get her recommendation for treatment. This will involve a plane flight for me, but I should be able to do it in one day. I so appreciate the time and humility of this woman. She is calm, she takes the time to explain things to me, and she can admit when she is not sure of the best treatment and can look to others for help.
I finally feel like I have a doctor! I am not one who likes to change doctors – I like to give them a chance – so this past year has been very stressful for me. I had to learn that it is OK to walk away when doctors are not serving me well. Sometimes it is a personality thing, other times it is simply the ability to do the very best thing I can for the care of my body and my life, even when it means walking away from doctors and finding the ones that work for me.
There are so many important attributes for a good oncologist to have, such as being honest and having empathy. But the number one thing for any good doctor is to leave the big ego at home!
Yes. Yes. Yes. to all of the comments here.
I realize that I was mostly ranting with my comment and did not address some of Lisa’s specific questions.
Scan reports. I am ok with seeing them first, then discussing them with the doctor at the next appointment. It gives me a little time to digest the results and prepare my questions and concerns. I am NOT ok with having to call the doctor and asking her to phone me with the results, only to wait a week or more for a return phone call.
If I get emotional (which I rarely do; other than getting anxious I don’t cry a lot in front of others) I want my oncologist to respect that. Not try to talk me out of it. Allow me my feelings, whatever they are.
I do NOT want to sense panic and urgency in my doctor. My doctor called 3 times with dire news (that my brain was swelling, that my hips were fractured, that my test results were so bad that I needed to come in at once so that she could tell me in person), and each time I felt that I needed to calm HER down. Whatever it is, it is what it is, and I will figure my way through it. I need a doctor who will accompany me, support me.
It is important for me to know that if I get into a situation in the middle of the night (like a brain seizure that I’ve never had) I know what to do and where/who to call. My husband is out of town a lot and I am at home alone. I ended up calling my friend who took me to the emergency room when my fever spiked to 103 – but I would like to know specifically what to do in situations that might arise.
I like it when my doctor shows some interest in my personal life. We don’t have to talk a lot about it, but it helps to know that my doctor sees me as someone other than just another patient.
Rather than questionnaires, I like it when my doctor asks me the questions herself, and I can watch as she types in the answers on the computer.
Another aside (or perhaps another rant), how the doctor dresses. My 2nd oncologist for the year came to work looking like she was going to a cocktail party. I don’t know why, but this annoyed me. Very cute little black dresses, with very expensive and high heeled shoes and a necklace to match.
On the other hand, my brain surgeon who I loved, came in with a full plaid suit and pointy black shoes. I thought he looked like a leprechaun and was amused.
Maybe that’s not so important.
Yes, definitely ask about personal lives… and treatment options. I wasn’t given the choice in the matter and never asked about if I had or wanted children or not. They assumed and next thing I knew, I ended up being sterile.
And please, treat the PATIENT, not just the cancer. Be aware of the repercussions of hard core treatment. When you go all out in the situation of a life or death situation, in the small chance the patient does survive, don’t let that patient go with the ” NED” crap and no more care. So much more care is needed to treat the damage caused by intense chemoradiation, patients should be made aware of this and so should medical professionals who will have to figure out why your organs are failing for “no reason” after treatment. Information, information, information.
Also, make sure everyone on the team is of the same mind… I was told by some I was dying and by others it wasn’t so dire. Turned out it was dire. Still is. Made me turn against my oncology team and distrust them all until I figured out by myself where the truth was. And do take the time to give the real medical information to patients who ask about them. Some people are quite informed and dealing with actual facts help.
And I agree, no personal info FROM doctors. Palliative care sp. telling me his wife died of the same cancer I had at the same age I was, all teary eyed didn’t help AT ALL. Also, a bit of empathy goes a long way. “Your cancer WILL come back, not a question of if, but when, and you will most probably die from it” is a bit harsh to tell a patient right after the last treatment.
So simple steps to take… and you don’t end up with a bitter, bitter patient who considers herself a “treatment survivor” instead of a cancer survivor… living on borrowed time, from one hospital visit to the next.
I can’t speak directly to breast cancer but I have experienced many of these issues.
I want results of tests as soon as possible. Details can be discussed in detail at a later in person appointment. The waiting is the worst.
I am really only interested in the doctors personal experience only if it directly relates to mine. Soundtracks but my doctor is not my friend and I want the professionalism. It makes thing much easier to absorb.
I want to know my options. I might want to know what that doc would suggest for their own family. But I select my treatment based on the options and how it would affect my day to day quality of life. There is only so much I am willing to put up with. I don’t want to be pressured to use a treatment without knowing everything about it. I need those questions answered.
I know I am always asking about prognosis.
Most of my doc’s ask about my personal life and seem to remember. I’ve been with my hemotologist so long that I’ve been through two husbands, two house, two jobs….
My requests would the that they take the time to understand my complete medical history before recommending anything. I have multiple health issues so treatment for anything is not necessarily the same as other.
I want them to keep the lines of communication open. I do not need their email address to send them non stop questions but I expect when I call and ask a question I would like an answer in a reasonable time frame. I never want an attitude from you and your staff.
I also want honesty in reply to my questions. No beating around the bush for me.
Finally, work on your bedside manner!
Just my two cents here.
David Davidson’s 6 point outline above is spot on. (Thank you David!)
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I am 51 with no children. I have mets in my mediastinum, liver and T8 vertebra. Fortunately, I am not in any pain. Gemzar and Zometa are given by IV through my newly installed port (11/9/13). Infusions are once a week for 2 weeks than 1 week off. Zometa is given once a month. CT Scans are every 6 months.
Palo Alto Medical Foundation, which is part of Sutter Health, allows patients the option to see their test results online. My result are released by my oncologist. I’ve noticed, that if there is a result with less than desired results, she will call me first, before releasing the report. I didn’t ask her to do this, but I think she just had a gut feeling that this would be the best way to inform me, and, in my case, she was right.
Lisa, I hope that one day you and I will be a friend of NED…no evidence of disease!
Vicki
Dear Lisa, thanks for what you’re doing – I admire your strength to keep going! I often get so frustrated with physicians I wanna crawl into a whole and never face them again. I’m living with an incurable type of cancer which is stable at the moment.
My first wish for young oncologists is: when you’re dealing with an incurable cancer – think long-term, not just about the next month. You might change your placement in a few months time, but the patient in front of you will have to deal with the consequences of the treatment you suggest for the rest of their life. So many doctors suggest an aggressive type of treatment as first option because it “might give the longest progression free survival”, without thinking long term – quality of life, chances of subsequent treatments working, etc.
My second wish is: see the human being in front of you. Do a simple experiment – look into the mirror and say: “I’m a breast cancer patient”. And then try again and say: “I’m Dr. X, I work as an oncologist. I have two children and a great wife. I’m a passionate cyclist and I love travelling. And I have breast cancer” See the difference? A “breast cancer patient” is just personalized cancer. Try to see the person in front of you – with more characteristics than just the tumour. And try to treat them like this!
As for communication, test results and so on – everybody is different. I wanna be in control, know about my results, make my own decisions – very similar to you, Lisa. But I know there are people that want their doctors to take charge. My best wish would be to the doc – try to get a feeling for the person in front of you, what works best for them.
Best wishes to you, Lisa,
Sophia
These are great suggestions, and I’m learning a lot as I read them. I hope you don’t mind if I share my own perspectives as a medical oncologist, now practicing for 22 years (the last 4 specializing in the treatment of patients with breast cancer). In no particular order, here is some advice I tell fellows and other junior physicians:
1. In every encounter give the patient time to talk, preferably early in the visit. Ask him or her what they are thinking, what they want from the consultation, what they are looking for.
2. Ask patients about their home situation and how they are coping. And as others have said in these comments, find out what pressures they are facing in their own lives that you don’t know about. And write it down! Don’t try to rely on your memory.
3. Find out where the patient is getting medical information. We assume most people use the Internet but it’s not universal yet. Make suggestions about reputable sources of medical information online. It only takes a second to tell them the names of web sites you think would be helpful to them.
4. If you have a patient portal and it’s configured so that patients can see their test results online, expect that they may find out results of scans and labs before the visit. Sometimes it’s bad news. Prepare them for this, and reassure them you will discuss the results in detail at the next visit, or prior to that when necessary (set up reasonable expectations for them and for you in regards to this).
5. Ask permission before discussing prognosis and timelines. Never shy away from a direct question about predicted survival, but be sure to clarify terms such as median survival and 2 year survival. And when you do ask permission and the patient immediately says, “I want to know everything,” pause for just a minute before blurting out “6 months.” It’s part of the art of medicine and human interaction, but it’s not rare in my experience that when someone reflexively says they want to know everything, sometimes it’s easy to see in the glances and body language in the exam room that they don’t, at least not right at that moment. But if you’re sure this is what they want to hear, deliver the news clearly and empathetically.
6. Model your behavior after senior clinicians you trust, those with a reputation as being “good with patients.” You can’t learn bedside manner from a book or a class. I’m blessed to work with brilliant fellows at Johns Hopkins, many of whom will become great scientists and investigators. I often can’t teach them much book knowledge that they don’t already know, but what I try to offer them is my experience as a clinician – what works and what doesn’t in the exam room and beyond.
All of the comments are so spot on. I would add that Oncologists work in offices with staffs. As I supported my mother throughout her metastatic BC, we often found the staff the most difficult. We loved her oncologist, but the receptionist and nurse made everything harder. Their key objective seemd to be to protect the doctor – from being behind schedule, from difficult/multiple questions, etc. As you speak with oncologists, I would ask that you make them aware of the complete experience of their office. And to take the time to train their staff and reward compassion.
Totally agree with that… and residents. Oh! Lord, the residents… I know some are pretty young but, they need to be made aware of where they are and what and who they are dealing with. After chemoradiation for advanced cervical metastatic cancer, I was reluctantly going to yet another colposcopy only to be greeted by two giggling residents, chewing bubblegum, and one of them asked me point blank ” Ya think y’have cancer or y’already got it?” Um… how ’bout you read my file? and then proceeded to do the exam like a plumber, commenting, to me (!!!), that I was perhaps a bit nervous and that the exam didn’t hurt, so why was I moving like that? Obviously, she was never made aware of the tenderness of fresh scar tissue and of a little thing called shrinkage.
So all in all, having to deal with those two less than professional so and so’s made an already difficult exam unbearable.
I second this. If the oncologist requres patients to see the physician’s assistant every other visit, be sure the PA is up to the challenge(s). We have experienced mis-interpreted scan reports, lost prescriptions for pain medications and, most significantly, a missed lymphedema diagnosis leading to permanent disability.
Listen, honor the wisdom of the person who inhabits the body. Let them have all the options.
I was inflammatory breast cancer, stage 3, regretfully “promoted” to stage 4 because of mets in my spine less than a year after initial treatment. I have been blessed to have a wonderful experienced medical oncologist, and my doctors all work together as a team.
So my main suggestion is something he did right. He was aware I was a music teacher and a pianist. The chemo he wanted me on causes neuropathy in hands and feet. He told me up front about that and he said he would be checking my hands regularly and if he had to he would make treatment adjustments in scheduling and doses. He said he had treated musicians before and they are rarely grateful for saving their lives if they can’t play their instrument. I have an annoying tingling now, but I still have feeling and full use of my hands (my feet are not so lucky, they got the neuropathy bad). My point is, know what is important in your patient’s life and how treatment may impact that. Then whenever possible, take that in consideration in treatment.
One thing not to do, first time I saw my radiation oncologist, he told me my case had been discussed at the meetings, and he requested to be my RO because my case sounded so “interesting.” Nobody wants to hear their case is interesting to an oncologist!
I was diagnosed with stage 1 cancer last year. It is not metastatic but I am aware from yours and other’s stories that it might become so and I am very grateful for you and others who share their stories to help those like me who one day might need to read again what you have said.
My one piece of advice to oncologists is please listen to your patients. Particularly about how and when they want to deal with information. I am in the UK, so not sure if this is the same in the US but suspect it might be. While I am grateful that my oncologists and breast care nurses set out to be compassionate I am afraid their well meaning attempts at sensitivity eventually tipped over into causing me real anger and misery because they did not listen when I asked them to give me results over the phone. They even refused to leave voicemail messages about non essential matters because of this topic’s ‘sensitivity’. I ended up feeling ignored, patronised and discounted and what is worse, playing telephone tag over a number of days to get any information. I am a litigation lawyer and cannot always get to the phone.
So please listen to what your patient is saying. Trust them to know whether or not they will need a lot of hand holding and support or whether – like me – they would prefer not to have to also deal with friends and relatives anxieties at appointment time. Make things easier if you can by being willing to communicate by phone or email if patient requests it. Don’t adopt a default mode of hushed compassion if this is not what your patient wants or needs.
I know you all meant so very well but sadly you ended up multiplying my stress and frustration when you could have done so much to ease it.
I would like oncologists (and all doctors) to be very familiar with the testing procedures at the hospitals they use for tests they order. I was recently sent for a lumbar puncture. I asked my doctor to walk me through exactly what that would look like and how long it would take, so that I could be mentally prepared and also know how to prepare arrangements for care for my three children, and for someone to take me. I had to travel 1.5 hours to get to the hospital, and I homeschool, so this was especially important to me. She walked me through it, and I felt prepared. But, when I arrived, it was nothing like what she had said. She did not say they would be placing an iv, or taking blood, or doing the puncture in IR instead of bedside, or that I should have stopped taking Excedrin prior, or that the doctor doing the puncture needed to have seen my MRI, or that by admitting me through the neurology department I would be required to stay for 2-4 hours post test. These are things that she should have known, and I should have been told. All she gave me was a general description of a typical procedure. It was incredibly unhelpful, and increased my stress and discomfort unnecessarily.
Hi Lisa,
I live in Canada and my experience is with the Canadian medical system.
A year ago today I was diagnosed with Breast Cancer. I had no symptoms. I felt no lump, nor did the doctors. Before the diagnosis, I thought I was living the NED dream.
I feel the weight of that diagnosis.
Nothing prepared me to be a patient, let alone a cancer patient. Lisa, you played a role in my education.
Throughout my screening and testing and surgery I was told when I asked questions “oh your oncologist will tell you that”.
So 101 days after my screening mammogram (and after surgery) I met my oncologist for the first time and said – hope you are up for a patient led interview – because I have waited, complied, did everything people asked of me and now I need to know the diagnosis, stage, grade, type of cancer, treatment and prognosis before I can do anything else. My emotional bucket was full.
I told him: “after we reviewed my pathology reports and what they mean, questions arising from them, diagnosis and next steps – then I would be happy to answer your questions and have an exam”. He went with that. For me, I ask questions that I think I know the answer for, or am prepared to hear the answer. An oncologist should listen for the questions that are not asked.
My diagnosis was Stage 1A Breast Cancer. After surgery, I asked my oncologist if I still had cancer, his response was No evidence of disease Gail.
Here’s the thing, everything leading up to my mastectomy had a “pre-admission clinic” feel attached to it. Why I wondered don’t they have an “understanding your pathology report clinic” and “your first meeting with your oncologist clinic”. Sort of to help manage expectations, give information on the type of cancer you have (not the treatment plan) and discuss the role of statistics and the mathematical models that oncologists use.
I have no doubt that my health care providers have expertise in their fields but sometimes I think they fail to appreciate the expertise that I have with respect to my own condition and well-being.
I am not fully convinced that the medical profession wants engaged patients. If they do, they want it on their terms.
Canadian cancer patient here too, and I couldn’t agree more with what you said. It’s like here, the doctor is God and knows all, don’t question His wisdom. Second opinions are a thing stemming out of irrational patient minds and asking to be diagnosed AFTER walking in the office will get you at the bottom of the schedule.
My gynecologic oncologist informed me at my last appointment that he will be retiring at the end of this year. Therefore, I have been doing some thinking recently about what he has meant to me. It’s been 14 1/2 years since our paths first crossed. At that first consultation in 1999, a member of his staff took my picture, which was standard practice for all patients. At first this seemed somewhat unusual (no other physician has done it before or since), but I came to realize that my oncologist wanted to be sure his staff members were able to recognize and acknowledge each patient by name when she entered the office. All of his employees, with the exception of those few who have retired, were with him in 1999 and are with him today. In other words, he treated his staff the same way he treated his patients–extremely well.
If truth be told, I have not been an easy patient. In the years following my diagnosis and treatment, I often went to appointments with pages of questions. My oncologist patiently answered all of them to my satisfaction. Over the years, I have had a number of medical issues (bad mammograms, partial bowel obstructions, and a severe cough, to name a few). My oncologist was always there for me as a tremendous resource, even when my problems were outside his area of expertise.
The severe cough, for example, was, after an all-night trip to the ER, initially diagnosed as metastatic cancer to the lung. The ER physician wanted to have me admitted for additional testing to pinpoint the source of the primary cancer. Instead, I politely declined to be admitted and had the ER fax the chest CT report to my oncologist, requesting his input. He promptly called me and suggested a plan of action along the lines of the plan I had sketched out in my mind after leaving the ER. He was also cautiously reassuring, saying that while he did not know what my problem was, based on the lung CT report, the “suspicious for metastatic cancer” impression seemed to him to be a huge leap. (The ER doctor apparently forgot the “suspicious for” part and just told my husband and me that I had metastatic cancer to the lung). I later found out that I did not have metastatic cancer, but had a rare condition called eosinophilic pneumonia.
After recently learning about my oncologist’s upcoming retirement, I sent him a card thanking him and telling him I will sorely miss his wealth of knowledge and expertise, his great sense of humor, and most of all, his genuine concern and empathy for his patients. I also told him that his retirement will leave a tremendous void for the women in the area. I would suggest that the young oncologists strive to support their patients in the ways mine has supported me over the years. If they do, they can look forward to highly rewarding careers and many very grateful patients.
Delivery of test results (for me) depends on the test. I was diagnosed with bilateral breast cancers last year and am currently NED. Because the surgeon and radiologists doing the biopsies had prepared me for a cancer diagnosis, getting the path reports over the phone was ok. However, I wanted the surgical path report, especially node status, delivered in person. Docs should ask patients what they prefer for each test and not assume on the basis of previous preferences. Being told to “bring somebody with you” for the results tells you the results. For me, this woukd be the worst possible option.
Recommending a second opinion would increase my trust and respect for a physician.
I would have no trust in a doctor who presented me with no options or stated that they were 100% sure of appropriate treatment. My RO was the person who most helped me to come to grips with my diagnosis. He was open about what could and could not be done, long and short term risks, and what he recommended and why. He went through the path reports, explaining each item, and introduced me to his entire team and told me how I could reach any of them at any time.
Honesty and empathy are most important and that means taking the time to explain and let the patient express their emotions in whatever manner they need to.
Sharing their own cancer experience I think blurs the line between patient and physician and probably exerts a subtle pressure on the patient to adopt the same treatment/response. That said, I did seek out my GP’s PA to talk about coping strategies, even tho he had A different type of cancer. I felt comfortable doing this because he wasn’t the person in charge if my cancer care. It probably depends on the kind of relationship you have with your doctor and how long it’s been.
I love your blogs Lisa they give me strength – Thank you x
I got to the hospital by 09:30 and was told I had cancer at 14:15 ( you never forget ). As I had only been referred to go to the hospital by my local GP with ‘it’s nothing to worry about’ and ‘it has the appearance of a cyst which they can easily drawn off In clinic’. I went alone. During the 4hrs 45 before diagnosis I met with 4 Drs and no less than 6 different nurses. Not one asked how I had travelled to the hospital that day or who was with me. I was basically told it was cancer I would need surgery, radiotherapy and Chemo and this is your McMillan nurse. I then left and drove to collect my 4&3yr old and my baby of 6months from nursery I went home and it was then that I called my husband at work. He came home and he had to ring my nurse as I couldn’t / didn’t know if it was true.
I would say my one thing would be.. Get to know your patients before delivering devastating news x
What a great topic, Lisa — I’m fascinated at the responses and discussion.
I would add two small things and one (to me) big thing:
Small things:
1. If I bring up new treatments I’ve read about that are of shorter duration or less intrusive, don’t act as if I’m trying to ‘play hooky’ from treatment. Discuss why those treatments may not be applicable to my situation, or may not be proven enough.
2. If I bring up complementary treatments I’m getting to offset treatment side effects, please do not roll your eyes.
Big thing:
I know that many patients, after a cancer diagnosis, are concerned with test results (not necessarily related to cancer) that come back a little off, and will willingly pursue as many diagnostic procedures as needed to clarify what may have caused that particular test result. I am not one of those people, and I suspect there are others like me. Please do not pull out the ‘cancer card’ every time a test result is a little wonky and tell me if I don’t get whatever expensive/painful procedure is needed to clarify the test result, I’m going to have a recurrence/metastasis/new cancer/whatever. I’ve had this happen repeatedly on test results that were both related to cancer and completely unrelated. I went along with my docs, even though I had a strong feeling the procedure wasn’t needed, and every time it turned out I was fine. My complaint is not that the doc thought the test was warranted; it was that he or she would not discuss the risks and benefits or percentages, but instead merely threatened me with impending doom. I am now so cynical about the whole process, I refuse pretty much everything.
I hope this last part makes sense.
My parents went to all the apts together for my mother’s MBC. After the first few, the oncologist called my father at the office to say that should he ever wish to discuss anything or ask questions without my mother there, he could call anytime or make apt to meet in person. He explained that he always has some one on one time with patients during physical exams and questions come up that might be difficult to raise in front of loved ones. He assumed that might also be true of family members. He stressed everything would be confidential – even that they had a conversation. Don’t know if that would still be allowed with hippa, but it was a tremendous help to us. My father did take him up on the offer – twice. And whenever he speaks of my mother’s cancer, the first comfort he always sites is the kindness of the oncologist reaching out to him.
I totally agree regarding the comments about staff. I love my oncologis, but have actually considered finding a new one due to the nurse. I had to fight to have my chemo port referral. I ended up having to go to the nurse manager to get it done. She also told me there was nothing that could be done when I called in to report level 8 bone pain. Very frustrating.
Amy, there is no excuse for a nurse treating a patient that way. I know, I’m an RN. Don’t accept that kind of behavior. Let the doctor know your experiences with staff (positive ones, too. That may result in a raise for a great nurse) and you can also ask to speak (depending on the practice and it’s size) to the office manager or practice manager. If it’s a hospital based office, there may be a patient advocate or ombudsman you can talk to to intercede on your behalf. ESPECIALLY if a nurse is practicing in oncology, she/he should know that adequate pain relief is a patient right now mandated by the federal government. A pain grade of 8 on the 0-10 scale is out of control, and there are MANY options for pain management. If your doctor has been unsuccessful in getting/keeping your pain under control, ask for a referral to a Palliative Care physician. They specialize in management of symptoms for patients with serious illness. Being a strong advocate for yourself can result in not only better quality of life and less stress and suffering, but longer life.
Lisa – this is a great post and all of the comments are spot-on. I echo all of Bob Miller’s comments. The only thing I will add – as a physician, it is expected that you will be up to date on the latest studies and treatments, but do not be so arrogant as to think that your patient may have come across something new. Be open to discussion of complementary treatments and different treatment options. And don’t be afraid to be human. This is a difficult emotional time for patients – there is nothing wrong with showing some of your human caring side and it will most certainly be welcome. Actually – this applies to all docs, not just oncologists.
A few things –
For surgeons especially, if the cancer surgery was more extensive than it was originally thought to be, tell the patient’s family IN PERSON. If some other condition was discovered during the surgery, tell the patient’s family IN PERSON. My mother went in for oral cancer surgery which turned out to be more extensive than he initially thought. The bigger discovery was that the surgeon discovered that my mother also had breast cancer. All this news was delivered by telephone to us in the waiting room. We had tons of questions for him but that was all the information he was going to give us. We had to track him down outside of the recovery room to get more information from him and even then he was not very forthcoming.
My second comment has to do with unnecessary tests. My mother’s doctor was obsessed with my mother getting a colonoscopy. Who cares what they would’ve discovered? My mother’s cancer had spread to her brain by then. Why insist on putting her through that awful colonoscopy prep?
My third comment has to do with the staff in the doctor’s office. My mother was not going to get better. Stop telling her she’s going to get better. Stop pretending and acting as if she was.
Finally, if there is absolutely nothing left to do, please say so and offer ways to help us with the next step. Don’t, however, distance yourself from your patient or your patient’s family. When it was time to bring hospice in, we could not get in touch with mom’s doctor. We spent days trying to get in touch with her and finally reached out locally for assistance. Ironically, her doctor called the Monday after mom died. She felt stupid when we told her mom had died. Never heard from her again. After all the time we spent with her, that was the biggest disappointment of all.
Ans NEVER refer to a female patient as “dear” unless you have an intimate relationship with them. Especially important for new residents.
Told my doctor point on, I didn’t want to know what he thought my demise date would be.
He doesn’t have a crystal ball nor any doctor for that matter.
You hear the word ‘ C A N C E R ‘ that first time- your breath is taken away. We know exactly what that word means. Yet to tell us — as they can see expiry tags on our toes – well, six years, 2 years or less is heartless. Actually, this comment steals hope away.
Some like every detail and gain strength from details. Yet myself and others gain strength in knowing there’s hope and not knowing every detail of my supposed demise. We sure as hell want to know about out treatment options; what to expect; will it hurt?; what is to be expected after said treatment(s), etc, etc
My father fought in WW2. Questions posed to him long ago. Weren’t you scared of dying? Did you guys chat it up about what the odds were in surviving?
His response resonates with me to how I feel today.
No, they didn’t talk about it. They knew they had to do everything possible to stop Hitler or the world as they knew it would be gone. Each individual knew some would survive and some would die. No one had to tell them. No officer in their right mind would announce chances of survival to their troops.
Dad added, you can’t win a war if you don’t have hope in place. In each one of us, we live within hope.
It is my belief, we do. Deep down.
PS May I add, having to come to the office to hear the news is just wrong especially when you ask the receptionist/PA is it cancer? — no response — Hell they know, why can’t we?
I started reading this thread but had to go back trying to find the intent. Fellows in Oncology are not “young” but already MD’s looking to specialize. Their bedside manners have been ingrained for years. Teaching old dogs new tricks…. ?
Actually, most oncology fellows are less than four years from medical school graduation, since they usually have completed a three year internal medicine residency and go straight into a three year oncology fellowship. Some are older and have been in general practice for a few years but most are not and are under 30. So they are pretty green. Fellowship is a perfect time to hear some of the sentiments about the importance of patient-centered care expressed in these comments.
I have stage IV breast cancer.
If a doctor says they are going to do something (ex: order a particular test to be done), they should make sure that something gets done. Having a great staff is crucial. There is nothing more frustrating then a patient calling their oncologist’s office to find out if their cancer is still Her 2 neu positive only to find out the test has not been ordered yet delaying the start of treatment.
My mother died of breast cancer nearly 22 years ago. When she was in the hospital, and things were all going downhill, I remember a resident standing at the end of her bed saying, “well you have trouble moving because of the tumor pressing on your spine”, and later a conversation with a psychiatrist who said her depression was appropriate, and she had mets everywhere, including her lungs. It matters who delivers the news and that it is correct. I didn’t like the resident making an offhand remark to my mother who was sad and afraid. I wanted the info to come from her onclogist, who she trusted, not a snot-nosed kid. And actually, I took said resident apart out in the hall. Yes, of course, I was upset, but they need to learn that these are patients not spine compressions. As for the psychiatrist, he had confused my mother’s information with another patient’s. When you’re hanging on for any hope, and you think you know the score, the idea that you don’t know everything is hard to take. I understand that people make mistakes, there is a lot of information, but again, each patient is an individual, family members are desperate to hold it together. Respect and full information are really important. There is a difference between honesty and callousness, IMHO.
Thank you so much Lisa, for everything that you do. Wishing you the best.
What I like best about my oncologist is that he tries to turn things into a positive perspective even when it isn’t good news. And he always hugs me and tells me that I am his favorite! One time I said, “I bet you tell everyone that” and he said, “Yes, but you are REALLY my favorite!” …with a big smile.
I had a consultation with one, before this one, who clinically examined me and asked if I knew what my prognosis was. I said, I think so. He said.”..well…you will be lucky if you live 5 years but I can schedule you for chemo and rads and see what happens.” I did not return …and then found the onc that was nice!
My dad was diagnosed with Metastatic Carcinoma from an unknown origin. He received his medical care through the Dept. of Veterans Affairs. Most often they are teaching hospitals. He had dozens of doctors in a 16 month period resulting in a major lack of continuity. I haven’t been able to read all of the comments here word for word, but my suggestion to Oncologists is consistency. Be consistent.
I would agree with that report you reference about self-disclosure. Unless the onc has gone through something very similar, I don’t think the doctor should try to compare something in his/her own life to that of the cancer patient. For example, when I received my dx (stage 4 colon cancer), I said “How am I going to tell my kids?”. My onc’s response? “I know it’s hard, I have kids too.”
Yeah, but YOU DON”T HAVE CANCER (or a sister who had died a few years before at the same age, as was the case for me).
Clueless, imo.
My very active and involved father had leukemia for a year and a half before he died at 90. I was the main coordinator and helper as he transitioned in and out of the hospital for chemo. I have to add to the other great comments that if you are the oncologist covering hospital rounds for your partner, please do not decide to change everything on your own then leave the hospital without discussing it with the patient, family, or the other doctors.
Ask your patients how they would like to be addressed and follow that request. For my mother, it was very important that her medical team address her by her first name. Others may have a different preference.
Doctors should only offer a life expectancy prognosis if the patient asks. If it is requested, the doctor should explain how the prognosis is figured. Explain that a prognosis is a statistic and that no one has an expiration date. Also, prognosis information should only be given by the primary oncologist, not an emergency room or hospital oncologist.
Oncologists should encourage second, third, even fourth opinions. And never make negative comments about another physician, institution or treatment plan that a patient is researching. Instead, oncologists can empower patients to make their own decisions by offering advice on how to research — what to look for, and what to beware of. In addition, oncologists should support patients who would like to implement complementary alternative treatments that won’t interfere with the conventional treatment plan.
Although Lisa already mentioned this, I would like to reiterate the importance that oncologists do not “distance themselves” as the disease progresses. Patients need greater support, guidance and compassion as the disease progresses, not less. A patient should never be made to feel that disease progression is viewed by his or her oncologist as the oncologist’s failure, or worse, as the patient’s failure.
End-of-treatment discussions should be handled with great care and compassion. Oncologists should schedule plenty of time to answer questions about what to expect, end-of-life care, resources and options. The hopeful spirit does not die when treatment ends. There are many more beautiful things to hope for and experience.
Just a couple of comments:
About the names. My name is Elizabeth but I prefer to be called “Beth”. When I introduce myself on the phone, I use Beth. Even when I fill out forms, I put in Beth, with Elizabeth in parentheses. But for some reason, probably because the insurance form is under “Elizabeth”, every wants to call me Elizabeth. I get very annoyed when a doctor who wants to be chummy starts calling me “Liz”.
As for “distancing”, it is very real. I notice it among friends and relatives who don’t know what to say to me. They simply stop calling. For an oncologist to do it is very cold. I want my oncologist to stay with me up until the end. If they can’t handle death, they should look into another specialty.
My words are empathy, empathy and more empathy! I am Stage 4 with mets in my lung, liver and bones. I don’t care what treatments that I have to endure as long as my oncologist has a kind heart. I need that right now because every day it’s hard to continue with treatment because most of my “fight” is gone.
I just changed hospitals and doctors because I felt like a number and that isn’t what my end of life should feel like. I am fortunate to live in the Boston area with some of the best hospitals in the country, BUT even the best needs tons of improvement from the patients perspective.
1. Rules are made to be broken. When I was told that my IV couldn’t be placed in the crook of my arm because of a new policy…..unacceptable because I’m not in chemo, it’s just for Zometa infusion and I have no risk of damage to my good skin. Make an exception for me! That’s right, I deserve that because the hand and arm is too painful since I get flare-ups due to autoimmune issues.
2. Talk to me about ANYTHING i want to discuss and don’t ever roll your eyes at me.
3. Keep appointments down to a short wait time because I don’t want to be there and I certainly don’t want to spend my day waiting for you because I need my precious time to have fun!
4. The above really bothers me for this reason: It’s NOT the doctors fault. The people who book their appointments are regulated by the powers that be to give them so many patients a day! If that doesn’t speak to what’s wrong with medicine in this country, I don’t know what does.
5. If I’m having a bad day…….tough! I’m serious, until you know what cancer is like, don’t tell me to calm down, stop crying, or stop raising my voice. I want every oncologist to sit in a chemo chair and let me tell them to calm down.
6. I had extensive chemo and radiation 4 years ago so I know what that feels like.
7. Tell me my prognosis and do every test necessary to tell me accurately. Don’t assume that I truest you to make those important decisions about my care.
8. I was told (after a biopsy) that I had no cancer in my chest wall, four years ago. Guess what? I’ve had it all along because they didn’t take enough tissue when testing. Not a great feeling knowing that maybe, just maybe, I could have continued treatment back then and kept this spreading at bay a little longer.
9. a little touch of the hand or shoulder or even a hug (I’m Italian and like hugs) never hurt anybody.
10. Empathy, empathy and empathy.
Advice for an oncologist: when a patient asks for statistics please answer! We know those numbers aren’t written in stone but when you avoid giving the numbers it is scary and frustrating! My oncologist did everything short of refusing to avoid giving us survival and recurrence numbers. When he finally gave them to us he handed me a piece of paper, face down with a grim expression. The numbers on the paper were so much better than I had thought they would be but by that point, I did not trust that they were not rigged to look better. Mt radiation oncologist always seemed really uncomfortable. When I asked him About my post radiation rib pain he did not let me know inflammation months after finishing radiation is common. Instead he told me how Fortunate I was to not be the character in a movie he watched who had his ribs broken in a boxing match ( NOT kidding, this really happened). It was my last appt. with him so I did not have to go through the trouble of changing doctors. The advice in this little anecdote would be not to compare a patient’s experience with another persons or a movie characters in a belittling way. Just give your patient information and empathy. Withholding the facts is not helpful for most people.
When my father was dying of lung cancer, his oncologist’s father was also dying of lung cancer. For some reason it made us all feel better to know that this doctor genuinely did understand what we were all going through. MY father and the doctor’s father died less than two weeks apart.
1. Be selfless. Don’t make it about you. That means, don’t talk about the expense of your nanny, don’t be as ebullient cheerleader, what another patient told you that day or made you exasperated.
2. Be cool. Be composed. Be yourself. Don’t be what you think you ought to be. Just be yourself. Be comfortable.
3. Don’t make promises you can’t keep. Don’t talk about how you
cured my cancer.
4. Don’t take patient questions as criticism.
5. And yes, having a great staff is critical. My oncologist is warm but also manages his staff like an army which is to my benefit.
I know I am too late to contribute to your meeting, but I also know that this post will continue to be read by many. I have only one thing to add to all the other wonderful suggestions, and that is to simply say to your patient “I am so sorry that you are having to deal with this” It is a very powerful statement that I have found only a VERY few people have said to me during my treatment. One was my oncologist and the other was you, Lisa. It has the effect of showing true empathy for the individual person directly. I now use it myself, as I know how it feels to have someone express it and the emotions that it brings forth.
Lisa:
You are an amazing woman and I place good thoughts out into the universe for you and your family every time I think of you (and Ann Silberman), which is often 🙂
My one piece of advice to any physician: Please address me by name. A simple, “Hello, Deb . . . .”
My first oncologist is about 30. That seems very young to me, I’m 57. When I told her my first experience with cancer was being told that my grandmother died of cobalt treatments for cancer in the 1950s, she rolled her eyes. When I told her I was raised by parents who grew up quite rurally during the Depression, and for whom a trip to the doctor, in their experience, meant that you were going to die, she turned away and did something on the computer keyboard. When I met with her the second time and she had my PET scan results, she came into the room and talked for 5 minutes about something or other to do with treatment options and then casually dropped in to her commentary the fact that the PET had revealed no sign of cancer except for the known tumor. I asked for clarification, and said, “I don’t want any of that chemo and radiation, I just want my breast taken off and be done with it.” She closed her folder and pretty much dismissed me. It was in the surgeon’s office the next week that I learned why I should reconsider my opinion. The surgeon is 45, and so I guess his skills of patient education and meeting the patient at her unique level of ability to comprehend and process information, are more developed. I suppose I am only repeating what others have said here. Patients have not only their own diagnosis to cope with, but the history of their family members’ experiences with cancer and its treatment, that they might need the doctor’s expertise to evolve beyond. Don’t just roll your eyes when I tell you what my forebears have endured; don’t be impatient when I say my aunt, my Dad, died of cancer treatment as recently as 8 years ago, and my mother then refused to be treated because of their suffering. All of this is not just a story that takes up time in the appointment. It’s part of what the patient has to process in order to accept treatment, and it’s the doctor’s job to provide information, education, encouragement, and hope that modern treatment protocols will produce a better result.
The oncologist needs to understand that while they have however many years of knowledge and experience with this disease, that for most of us, this is a new game. Part of a good oncologist’s job should be patience and the willingness to explain things.
I left my oncologist after treatment because her eye-rolling impatience and condescension was just too much. She got me through chemo and then she treated me like a pesky hypochondriac at my first post-treatment appointment. Honestly, the last thing I wanted to do was be in her office, the least she could have done was to treat me with compassion.
And this is a renown oncologist with over thirty years experience.
I would tell new oncologists to stay bright eyed and keep their compassion for as long as they can.
The oncologist should be an “ENABLER”, and get out of the way.
Let me explain that.
When someone is a patient with what is deemed incurable cancer, this person has the right to seek treatment that goes beyond what is normally regulated by protocols by government and professional institutions, like FDA (or other countries’ equivalents). That, in my opinion is an inalienable right. This requires access to drugs and treatments that may only be available via professional regulation, that is to say, direct prescription by a physician.
I’m not saying that a healthcare plan should cover for it; I’m only discussing the legal right to have access to such drugs and treatments. The patient has that right, and the oncologist is a good-doer if he so cooperates. I know this is complicated, and may incur in some difficult accountability issues; but you asked what I think young oncologists should hear, and that’s what I think.
In order to maximize survival, each and every patient in such situation should become an expert himself (or at least should have the right to do so), and the job of the oncologist should be not only to offer his medical guidance, but also to respect the patient if he/she seeks a different approach and, in an ideal world, help him/her have access to whatever drugs/treatments needed.
Needless to say, in an ideal world there wouldn’t be such barriers to drugs and treatments, and this wouldn’t even be an issue.
I cannot stress this enough.
And I also can’t help but to recommend Ben Williams’ page on http://virtualtrials.com/ as well as his book, “Surviving ‘Terminal’ Cancer: Clinical Trials, Drug Cocktails and Other Treatments Your Oncologist Won’t Tell You About”.
I have stage 4 grade 3 metastatic invasive ductal carcinoma which has spread to three places in my spine and most recently pulmonary nodules have shown up in my PET/CT scan.
I would like it if my oncologist would go over my written scan report step by step. He does not.
As for getting results, I see them on my patient portal sometimes weeks before I see him. I like reading and researching but I need him to explain what it means. It’s very upsetting that he doesn’t.
I like being given choices of treatment and then discussing the pros and cons of each one.
I would like to know his opinion on my life span. He will quote statistics if I push him, but won’t really discuss it with me. I’m afraid I could get down to a couple months to live and he wouldn’t tell me until hospice recommendation. This lack of his opinion is really scary to me.
I would love for him to be a little more personal. After two years I know nothing of his life, opinions, etc. it makes me feel like he just doesn’t care.
I, luckily, have a psychiatrist and a pain management Doctor who have both been invaluable.
I would have no problem filling out a questionnaire.
I think it’s very important for a patient to know what other care is available to them.
I got pamphlets,etc, at the beginning of my journey, but as my pain progressed my oncologist and his nurse didn’t tell me I could go to pain management.
It’s important for an oncologist to remember that the patient is scared and doesn’t retain information well.
I seem fine when I’m scared so I think my fear gets overlooked.
As someone with a family member with the scare of breast cancer, this personal blog I found to be so moving and I for once had the feeling like my thoughts and emotions were understood and could have some clarity. I remember hearing my mom tell me that she had lumps in her breast tested. The waiting for results was anguish. I didn’t know what I could do to help the situation, only being 12 years old. I didn’t know what breast cancer really was so I looked it up. Still till this day I have not looked up any diseases or ailments that plague any in my family for fear of the worst. From my understanding at the time those with cancer died a horrible and painful death and there was nothing anyone could do about it. Now I understand that if she were to have been sick, her results coming back benign, she could have taken precaution to help with her sickness.
I commend you and your bravery to deal with what was dealt to you head on. Any ailment is never easy, no two cases exactly alike. You are a survivor and not just because of the medical miracles that were performed but because of your determination to live.
My father was diagnosed with metastatic lung cancer on the 9th of December last year. Because he had some neurological issues with speech and balance he was sent for a CT scan shortly after diagnosis. He got a call from his oncologist a few days later on a Saturday while he was at the supermarket with my brother amidst the Christmas rush. The phone call was to tell him to stop driving immediately because it had spread to his brain as well and that he had to get to hospital in the next hour to get steroids to reduce the swelling. Although the circumstances were far from ideal for such a nightmare diagnosis, and the shock of that afternoon will never leave any of us, it was a necessary evil and the oncologist was not happy to have had to make that call. But he had taken the time on his day off to look at my dads scans and to warn us of the potential dangers we were facing. By the time the actual appointment rolled around on Monday we were actually calm and collected enough to understand a great deal more of what Jim had to tell us about the cancer. The waiting is the agonising part; limbo isn’t fun and I know it is what takes the biggest toll on my dad. I think sometimes when results are that important, phone calls should be made to help alleviate the stress of just not knowing. I know our family prefer this but others may not. It is deeply personal and I think it should be a choice offered to all patients as to their preference for contact, results, and appointments. In terms of telling the hard facts, we ask the hard questions when the details aren’t forthcoming and it really irks me when other people like registrars squirm around the finer points. If we ask it is because we want to know. If you simply don’t have all the facts just say so, but the more awkward you appear and the more vague your answers, the more I panic and think it must be really, really bad because this person doesn’t want to tell me. I won’t throw anything at you for being the bearer of bad news. I might cry, I might sit on the floor and sob, but I’ll appreciate your honesty and the clarity that the truth brings. And seriously, when someone you love is dying, and nothing can change that, I like to know that the person responsible for their palliative care, does care so don’t be staunch for me, or for him, sometimes people just need to know that people care. It must be a very hard job day in and day out and I sure couldn’t do it so I am thankful that others can. This is not meant to be criticism just my personal experience and for the record my dads team are fantastic, just a tad careful about what they tell us and that that just leads me to google which is 1000 times more terrifying!
Don’t three weeks after the patient passes call to inform the patient has missed a scheduled appointment.
And after the above embarrassment send a whimsical sympathy card where the staff has individually written or stamped his or her name all over like a
Birthday or office going away card.
It’s transparent and tacky.
Don’t tell your patients spouse the day after they’ve emailed you for advice re: the deplorable condition of the rehab facility he’s currently in (even though technically the patient has been discharged from your care) apologize and tell the patients spouse that when you’d contact him the night before that he was at a charity event and was getting drunk.
And last but not least…Never Ever respond to the spouses after she sends you and your nurse twice an email informing them your husband passed. It’s not only the least compassionate thing you could do,
It also creates suspicion
I feel the best trait is for an oncologist to have good communication skills and have accessibility.
My mother has recently been diagnosed with breast cancer that has metastasized to the spine, hips and pelvis. Her condition has deteriorated over the past few days and she cannot hold down any type of food. She has several complications that have developed and each call I make to the doctor is answered by her assistant. 3 phone calls yesterday, each with the promise of a call back on the same day. Was the call returned? No…two more calls today. Still no doctor.
Newly diagnosed patients are frightened. When they feel ignored, it adds to the already stressful situation. A simple phone call to be returned promptly can alleviate so much stress. Not to mention, address a horrible complication that may require immediate medical care.
I would say the MOST important thing a young oncologist should know not to do is lie to a patient with luminal a breast cancer about the benefit of chemo using risk reduction numbers, no matter the stage. The internet is just going to out them and destroy the patients trust in oncology. They should never bully a patient with scare tactics and be transparent with what they know. PTSD could be avoided in so many lives because those patients know they have been deceived and can never trust a doctor again.
I would prefer my oncologist knew at least as much as I did and did not answer the majority or my questions with ‘I don’t know’ I certainly would have appreciated it if he had not forgotten to order my chemo for two weeks and only ordered it after I called to ask about why I hadn’t heard anything. I have stage 4 kidney cancer that is in my lungs,in 2013 it was in my kidney 12cm and they thought they had removed all of it along with my spleen for good measure. Just last year my kidney surgen told me I was cured, now dispute routine check ups it is suddenly back, in my lung, too numerous to operate on and after an extremely painful surgical biopsy and drain of the fluid on my lung the have waited 2 solid weeks to been order the first treatment which will take days to arrive at best and no instructions so far.
I am in gear for my life and I am more afraid my doctor wants to kill me.
This is my third time my cancer has returned. My surgeon told me that lymph node removal during my mastectomy is not a good idea. This because possible scar tissue and lymphedema. Only problem there is that we can’t know if the cancer has spread. “So we are going to treat this as if the cancer has spread” However once I got to the Oncologist after surgery her only response was “He said that?” It seems that they should be on the same page. Her plan is only to give me hormone therapy. That is if the onco type test comes back as low in score. I would be inclined to even go along with her except for a couple of what I feel are important factors. One ..and I think it’s important..She took her blue marker pen and proceeded to write my original diagnosis on the board as a time line. Along with the treatment. But it was wrong . It was the wrong breast cancer. Next she wrote what I was then treated with. That too was incorrect. Maybe it’s was insignificant. Not to me. In my mind I am thinking what else is she going to get wrong.? She brushed off my correction of her mistakes as if it was oh well.. at any rate. So why would I trust her? It matters. I will go back for my onco score. Nothing else. I’m out of there.
I realized I shared my story in response to one of the first replies. I meet with my medical oncologist for the first time tomorrow. I have met with the surgeon oncologist and radiologist oncologist. My advice would be a “survical clinic” before surgery and treatment. Let the patient meet the wonderful team. Let the patient see the faces and hear the voices of those who will help them to survive.
I realized I shared my story in response to one of the first replies. I meet with my medical oncologist for the first time tomorrow. I have met with the surgeon oncologist and radiologist oncologist. My advice would be a “survical clinic” before surgery and treatment. Let the patient meet the wonderful team. Let the patient see the faces and hear the voices of those who will help them to survive.
I realized I shared my story in response to one of the first replies. I meet with my medical oncologist for the first time tomorrow. I have met with the surgeon oncologist and radiologist oncologist. My advice would be a “survical clinic” before surgery and treatment. Let the patient meet the wonderful team. Let the patient see the faces and hear the voices of those who will help them to survive.