Eye to eye: the doctor-patient relationship in stage IV cancer

March 7th, 2013 § 35 comments

IMG_4052Everything changes with a diagnosis of Stage 4 cancer. I don’t really think that’s an overstatement. My relationship with my oncologists has, by nature, changed as well. With stage 4 one of the things that’s especially important is good communication between physician and patient. It always is, but now two of the topics that are imperative to review at each meeting are side effects of medications/chemo and symptoms I’m having (especially pain).

I have always had two oncologists’ input on my treatment since my original diagnosis of stage II breast cancer in December of 2006. Even through the more than five years of remission, I continued meeting with them about my adjuvant therapy.1

Immediately after I was diagnosed in October with stage IV my oncologists began talking about finding a balance between length of life and quality of life. These two aspects of my life would have to be constantly juggled. The art of medicine and its role in treating cancer suddenly has become crystal clear while the science of decision-making often remains blurred.

For many people it is often reassuring to hear there is a plan, a prescribed protocol. There is a type of comfort in being diagnosed with a disease and being told there are defined steps you need to take. With metastatic cancer it’s not crystal clear. Patients must often help decide what is right for them.

I was offered options about which treatment to try first: a traditional chemo or an anti-hormonal combination. One would attack cancer cells, but also attack the healthy cells in my body. The other would aim to “starve” the cancer of some of its fuel (hormones). One important positive feature about my cancer is that there are choices about how to try to keep it in check. This hopefully will equate to having stable disease for a while so I can live longer. Some types of cancer do not respond to certain therapies and therefore there are fewer options in treating them.

When I went to see my medical oncologist at Sloan Kettering, this week she pulled the chair over and sat only inches from me. I was on the exam table, in the modest red and peach Seersucker bathrobe Sloan uses for their exam gowns. We sat and talked about research and trials and side effects and my blog and my family. She gets emotional sometimes when we talk about the current situation. So do I.

Then Dr. Chau Dang said something that I will always remember. She said that many doctors start to distance themselves from their patients as the patients get sicker and closer to death. She said this is their coping mechanism. Of course I couldn’t help but wonder if the same process is what is behind some of my friends disappearing and rarely contacting me anymore. Some physicians, she said, seem to back away, needing emotional distance not to be weakened each and every time a patient dies.

In contrast, my doctor feels this is precisely the time in her relationship with her patients to embrace them, bring them close, provide them care and comfort as much as possible. It’s important to remember, she always says, that this isn’t a case, this is a life. A person with friends and families who love them. Death happens for all of us. It’s her role to do what she can to prolong life, and when that can’t be done anymore, it’s important to still care for the person, not just treat the disease.

The nature of the doctor-patient relationship changes over the course of illness. Perhaps nowhere is that truer than in oncology. I’ve always been a partner in my care, it’s the only way I know how to be. It’s my life, after all, and the decisions we make as a team are ones I do not want to regret because I gave up control or didn’t have adequate information. However, I also accept that treating cancer is not an exact science.

Some patients do not want to have options. They want their physician to pick the course of treatment that seems best matched for the patient and proceed. A patient sometimes doesn’t want choices; he or she wants the doctor to do the sifting and prescribing. This works for many people, and takes the responsibility off the patient. There is mental comfort in that approach, too. I can understand why some people make that choice.

One of the things that is difficult in being a true participant in your own care is that while you get the satisfaction of partial control, you also must accept responsibility if/when things go wrong. This is part of the deal.

Some things just are.
Some things just happen, even when you do all you can.
I have accepted this jagged truth all along.
But I think some people never do.

  1. adjuvant therapy is additional treatment in addition to your main course of treatment designed to minimize your chance of a recurrence. It often includes radiation and/or hormonal therapy like Tamoxifen or Arimidex in certain patients []

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§ 35 Responses to Eye to eye: the doctor-patient relationship in stage IV cancer"

  • allnewpeople says:

    You write so beautifully about such a challenging topic for many – life, though for you. Thank you for sharing and letting people on this same journey know they are not alone, and for letting those of us not directly dealing with it today understand more clearly for when we or someone we love finds themselves on this path.

    Thank you for opening up and allowing us the privelege of praying for you and your family.

  • Anonymous says:

    You are so clear, so well written, and so eye to eye. I love that about you.

  • Damn tears.

    This is really powerful, and I am grateful that you have the oncologist that you do. She sounds remarkable, real and human.

    I love you.

  • Stacey says:

    Lisa,
    I was touched by this post. The paragraph that stood out the most, for me, was . . . “In contrast, my doctor feels this is precisely the time in her relationship with her patients to embrace them, bring them close, provide them care and comfort as much as possible. It’s important to remember, she always says, that this isn’t a case, this is a life. A person with friends and families who love them. Death happens for all of us. It’s her role to ease do what she can to prolong life, and when that can’t be done anymore, it’s important to still care for the person, not just treat the disease.” Until the moment you are embraced by the light of the next life, you are a person who is living life fully and beautifully on this Earth. YOU are a whole person with an alive spirit, this is so very true. Keep writing. Keep sharing. It helps everyone who has the privilege of reading your blog.

  • Jen says:

    Love that you have this. My mom’s oncologist was also compassionate — which to us meant he was invested! — up until the very end. It makes such a difference knowing you have that person fighting for you — not just medically, but emotionally, as well.

  • Anonymous in Portland oregon says:

    I have been considering changing oncologists from my first meeting. My oncologist has been avoidant in discussing any statistics relating to the odds of reoccurance or the chance that I may not be around in 10 years since I was diagnosed with stage 3 c. In november. When I finally demanded that he give me the stats available to him on adjuvant, he handed them to me face down with a grim look on his face. They were so much better than anything on line! A week ago I had an allergic reaction to taxol and he came into the chemo room and talked only to the nurse, no hello to me or my husband. Everyone keeps telling me I am so lucky to have him but I don’t feel that way. Lisa, this column about your relationship with your doctor has helped me decide to switch. This is a long term (hopefully) relationship and I shouldn’t settle. Hopefully I can find a doctor as empathetic as yours. Thank you for this column.

  • I am so moved by what your doctor said. I have tears in my eyes.

    I have known so many doctors to get worn out, burnt out, give up, get distant with patients with chronic illness. When it seemed as if I was dying, some doctors refused to even see me (they “declined” to take my case). One doc who had known me for years basically ejected me from his office because he didn’t know what to do. I think he was terrified.

    I do a lot of work as a patient to try to keep my doctors feeling fulfilled/hopeful/rewarded in working with me by using humor and trying to focus on any improvements or positives. I am so glad you have a doctor who is so kind and caring and able to stay connected with you. I hope she reads your blog and sees what you’ve written about her here.

  • Joel Eigen says:

    Dear Lisa

    Read this and as always, deeply moved by your honesty. I hope you don’t think I’ve backed away…I get so consumed with things here that i’ve been criticized by friends constantly for not keeping in touch. I’ll do better at this – I promise. It’s hard to find words that express how much I admire your courage – and I say this not in a ‘Hallmark’ fashion; I know what it takes to face ultimate issues. Please know that you’re never very far from my thoughts and, I promise, from my phone and email too.

    With love, as always

    joel

  • AnneMarie says:

    My own experience with MSK dating back to my initial meeting with the receptionist who took my films for their radiologist to review:

    You just don’t get to work at Sloan if you want a JOB. Those chosen to spend their “working day” within the walls of those MANY buildings in and around NYC and the suburbs have pursued a vocation.

    I realize there are exceptions to every rule, but I’ve been in and around too many of those buildings for 7 years without a break in the action.. FIRST, my very best friend and then two months later-me, followed immediately by my dad, my mom, my sister, my other sister and now again with my mom ….. I have yet to encounter an “exception” …. I’ve only had the privilege of meeting the “exceptional.”

    Love to you, Lisa,

    AnneMarie

  • Dear Lisa,
    This is such a powerful piece of writing. Thank you so much for sharing your voice with us. Sending hugs and warm thoughts.
    JoAnn

  • Joe W says:

    Yes yes yes, to everything you say here. My parents were both physicians, and this used to be a topic of conversation between them…how far to reach out, how much choice/power to give the patient. (This was a different time, of course.)

    As always, Lisa, you’ve made me think and feel.

  • Marjorie Kwah says:

    It didn’t occur to me when I was growing up, but my father never talked about work. Because of his specialty as a surgeon, he often had either patients who were older or patients for whom surgery was a serious undergoing. When he came home though, I could never tell whether he might have lost a patient or given a patient a tough diagnosis. The most human, emotional moments I witnessed were in the months leading to his retirement as he began to inform patients & assist them in their transition to another physician. I remember peeking into his office & realizing he was handing tissues to the wife of a patient. She was crying at the news. I don’t think I’d ever seen my father at a loss for.words. I think of this moment occasionally when I listen to friends who can’t find a doctor they connect with. I’m very proud of my father & the care he provided his patients & his patient relationships.

  • nancyspointn says:

    Wonderful post, Lisa. You have an amazing oncologist. And you’re so right about that truth. It can be pretty jagged can’t it?

  • Amy says:

    I, too, have stage iv breast cancer, and an awesome oncologist. I was stage iv at diagnosis which, in a strange way, seems like a blessing. I have HER-2 positive breast cancer, which is especially aggressive and prone to metastasis, so chances are I would have ended up here anyway if it had been diagnosed at an earlier stage. This way I didn’t have to be traumatized twice. But I love my doctor. She has always been upbeat, smart, friendly, kind and encouraging for me. A buddy in my support group is also one of my oncologist’s patients. My friend has had a much rougher, more dangerous ride than I have so far, and the doctor has been creative, persistent, and brilliant on her behalf. Time after time, she has pulled my friend from the brink. That makes me love my doctor all the more.

  • What a wonderful doctor … what an amazing human being.

  • Mary says:

    Lisa, again and again you have the ability to validate my feelings. I am very lucky to have an oncologist like you have. Her strongest suit is science, research and staying on top of cutting edge protocols. However, she never fails to ask me about my husband, kids and how I am coping with my Stage IV diagnosis.

    Our relationship DID change when I became metastatic. I knew it when she HUGGED me! That didn’t happen when I was Stage 1 two years earlier. I feel like WE are in this together and she is going to do all she can to give me a good quality of life for as long as possible. I also know she will gently tell me when she can’t and will cry with me.

    Thank you again for sharing your relationship with your medical oncologist. We are both truly lucky and comforted to know they are on OUR side in this horrific journey.

    Be Well, Lisa…today and all day long.

  • Kim C says:

    Thank you for sharing the details of your relationship with us. Just as you are helping all of us, I would think you are enriching the life of your oncologist with your presence – to have a patient as self aware, intelligent and kind as yourself. Your words of acceptance and gratitude landed so sweetly.

  • bethgainer says:

    Your doctor sounds absolutely fantastic! She’s right about oncologists distancing themselves from patients as their health problems get more serious. I’m so glad you have a wonderful oncologist.

  • Amy Hallman Rice says:

    Lisa, I found your blog recently and wanted to let you know how moving you are and how beautifully you write. I just completed my second to last chemo session for Stage 1, Her2Positive invasive pleopmorhic lobular carcinoma (with radiation and herceptin to continue on). I echo how important it is to have an oncologist you connect with and I am so glad you have yours. I think of you often and take inspiration from you! Sending good thoughts to you always. Amy

  • jbaird says:

    Lisa, I, too, just found your blog. As a stage IV breast cancer patient, HER-2 positive, I have found my new oncologist at Stanford Cancer Center to be just a doll; I can’t say enough nice things about her bedside manner. I’m in a clinical trial that she recommended, and she is so pleased at the results, you’d think I were her daughter. I am thrilled that your oncologist is compassionate like mine. Keep writing; you have wonderful talent. Jan

    • Sarah says:

      Jan, which onc do you see? I am in the process of switching to Stanford for care and am researching all of the docs. My current Onc. is so negative and critical and all about her own ego. I need compassion and hope. Would love to know who you see.

      Sarah

      • Jan Hasak says:

        I am so sad that your current onc is so negative. The onc I see at Stanford is Dr. Melissa Telli. She is so positive, compassionate and caring. I do hope you are able to get to meet her and be her patient.

  • Debora says:

    Love the part about responsibility being ours (or shared, depending) when we participate in the decisions of ourselves. And I especially love the last graph–strikes me as very powerful observation and a very powerful person who is fully engaged in her world.

  • Sarah says:

    Hi Lisa, I randomly stumbled across your blog three days ago, in this time I started from the beginning up until now! It’s blown me away and scary similar to my situation!

    I was only 26 when diagnosed with a very, very rare, aggressive form of cancer – Ewings/Undifferentiated Soft Tissue Sarcoma! No symptoms bar extreme neutropathic pain down my left leg, which was also going dumb and tingly – this is purely due to my tumor (which was fully throughout my whole pelvic region) growing into my left sciatic nerve! Horrendous!

    At that time (Dec 2008 i was officially diagnosed – I was in hospital, flown to three different hospitals in an 10 week period before finally getting a diagnosis and treatment plan! Nightmare!) I had been married since 2003, and had 2 young children, boys, aged 2 and 4yrs! I was given Six Months to live!

    Unable to operate (the only way to get a curative outcome with this Sarcoma is to operate) so my Oncologists decided, because I am young and healthy – up until then! – they were going to attack me with the most aggressive, high dose Chemo possible for 12mths, along with adjuvant Radiation therapy – maximum possible without causing cancer! It was hell! So much of your blog resonated with me. Chemo slammed me – the only things that kept me going were my children!

    I also loved your posts regarding how open and honest you were with your children – we also kept open and honest dialogue with our boys – yes they were so little, but my elder still had questions, and could see and feel things weren’t right! Family members told me that I was telling them too much – but they needed to know, in language they could understand – and I am so glad we did that because, as the boys got older, they asked questions – they felt and knew they could come to us for anything, and ask anything! Cancer was not a ‘taboo’ word in our household, it’s an unfortunate reality!! Thank you for confirming that what we did what right!

    As you can tell, I lived passed my Six Months – mainly on a prayer, lick and a promise! It’s a pure miracle! Miracle and I thank God everyday for this! But, it WILL return, and it WILL return even more aggressive! It’s extremely hard to live every day knowing that this is going to return, and then what will happen? Do I wish to go ahead with a low dose Chemo – even though the first Chemo destroyed my soul? That’s a hard choice!

    Like you, I get sick and tired of people saying “stay positive” or “you should be grateful, why are you moaning your tired” or “we are all going to die, I could walk out the door and get hit by a bus this morning!” or “your going to live, don’t worry!” – i have grown to hate these! People just don’t understand! I am so grateful, however, my life is not how it was! I can barely walk due to the tumor in my left leg! My left leg is totally numb and has NO strength! I used to play lots of sports, run, dance, walk every night – play with the kids, swim, cricket at the beach, jump up and down – and I was/am a Nurse! My cancer has changed ALL of this! I physically can’t do ANY of that anymore! So, not only have I had to fight for my life, I now have lost who I was, what made me, me! I can’t even work as a Nurse anymore, which I love! Chemo saw to this – i still get extremely fatigued and crash for weeks at a time! Chemo also has meant I’m in menopause – at 26! I’m now 30! That is depressing! No more children – a blessing I have my two!

    So, I’m trying to figure out who I am living with cancer – how to live like this, who am I in this new reality!? It’s hard, and i have bad, bad days! I am grateful everyday to have this time to be with my children, my husband – they are my everything!

    Lisa – you are an inspiration to me, I completely understand your situation, your feelings and thank you for making me feel not so alone anymore!

    Love, Sarah from New Zealand!!

  • lornepmoyer says:

    When i had cancer i couldn’t fathom that this was the only treatment available, now i know there are options and we are deprived of them by ?. even at stage 4 there are options, limited but not unheard of. your doctor should turn to
    Bannerji protocals to save your life insted of holding onto what doesn’t work.

    • This is the kind of bunk that we really don’t need. It’s insulting to those who use the best scientific measures available to extend their lives. The fact you can’t identify those who are “depriving us” of treatments shows it’s all conspiracy theory. If figuring out how to cure cancer were easy, we’d know it by now.

      • JulieMeryl says:

        Lisa i meant that for the comment above from lorne never posted before sorry best wishes. These the same ppl to drink green shit to get rid of my blood cancer. Sorry if it posted in wrong spot.

  • Diana says:

    Lisa, so good you have a special (and very human) relationship with your oncologist. Especialy when stage IV it is very important to feel confidence and genuine interest when you meet your oncologist.

    Am stageIV myself, diagnosed with mets during pregnancy, 8 years after stage IIB. ER+, PR+, Her2-. My oncologist was pregnant during the first months of my treatment, kept her bump hidden under her white coat, and our relation intensified after she gave birth to a son, too. She listens well and is open to my suggestions, which has given me the possibility to try more hormonal therapies than the hospital originally considered useful.

  • Merryl says:

    Lisa, I found your blog while I was looking up Dr. Dang. I am just starting on this journey. I am going to Dr. Dang for a second opinion.
    I have Stage 1 er/pr positive, hers Neu 2 neg breast cancer. The tumor is grade 3 lympho, vascular invasive. I had a score of 31 on my Oncotype.
    I had a very bad experience with my original oncologist, and now I am traveling from New Hampshire to see Dr. Dang. I do not know what my best options are and I am confused about what to do.
    It sounds as though Dr. Dang is the oncologist for me. I am hoping she can set me on a good course.
    To all of you women, please know that I am praying for your comfort and some peace of mind. My you be blessed with kindness and compassion from all the people that really matter in your lives.

    • Lisa Bonchek Adams says:

      I wish you well and hope that she can help. She is just wonderful. I think it is a challenge to coordinate care from such a distance (as you have) and this may be a challenge depending on how your local oncology facility works with others. My local oncologist works with her (was the one who recommended her, in fact) and of course I am much closer to NYC than you are.

      The first time (with stage II) I used her as a second opinion and did all treatment locally. This worked fine for me as they were in agreement about what chemo regimen to use.

      I am so glad you found her and hope that your experience will be a good one. My best wishes for your treatment.

  • Mabel Rae says:

    Great blog! – Interesting and inspiring at the same time

  • Sharon says:

    Hi Lisa
    My mam and I had an horrendous experience with the cretin that is the breast surgeon here. He’s an utter disgrace to the medical profession. Thank god mam’s oncologist was amazing. Straight by the book, no beating about the bush (which is what we wanted). We liked her from day one. So courteous and professional. She always made me welcome in mam’s visits. She rang me to the hospice when mam was moved v quickly. I sent her a card when mam passed away to thank her, after all it takes a special type of person to be an oncologist. She rang me again to my home (which I didn’t expect) and I so appreciated it even though I was fighting the tears. I can’t stress how important it is to have good doctors. Keep fighting Lisa, love from Ireland x

  • fujikats says:

    This is one of your best pieces!! Something to share with folks who have just been given a diagnosis – like my very dearest and oldest friend, whose husband has just been told he has a cancerous tumour in his lung that is inoperable. They meet with a thoracic specialist two days before Christmas to discuss what, if any, treatments are available to him. Bacon sounds good, gourmet yet – I like that, too. Enjoy it!!

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