Last week I was featured in an article by Liz Szabo in USA Today. You can find the story here. It was so much fun to see how many people saw the piece and for the kids to see themselves in a national newspaper.
The decision to have a mastectomy is not an easy one. Many men and women with breast cancer are thankful that their cancer is in a location where the tumor and surrounding tissue can be removed. When faced with cancer the reflexive reaction may be “just get the cancer out.” Statistics on recurrence and mortality rates with certain treatment options are handed over; a new language is learned, risks are assessed. How much risk is acceptable?
Dr. Susan Love, noted breast surgeon, argued in a blogpost recently that decisions by breast cancer patients to have mastectomies constitute “wishful thinking” on their part.
I agree with a few of the points Dr. Love makes, first and foremost that a mastectomy is not equivalent with a “cure” and that it does not ensure cancer will not recur. The problem is that her post really makes it sound like she is arguing with the decision.
In my case, I needed to have one breast removed; I opted to have the other removed as well.
Let me be clear: I had no delusions that a contralateral mastectomy was going to save my life or even prevent me from having a recurrence.1 I knew I could not control if my cancer would return. What I knew is that I could control how I treated my cancer, how I managed it, how I lived with it/after it. I knew there would be choices to be made. I knew cancer would not be a “once and done” thing for me. Survivorship means living with the ramifications of the disease, long after hair has grown back in.
I also very much agree with Dr. Love’s critique of food and eating particular items to prevent breast cancer or keep it from recurring. Dr. Love writes:
Finally, there is the wishful thinking about diet! The headlines scream that if you eat blueberries or drink red wine or don’t drink red wine you will not get breast cancer. We all want to believe this magic!
In reality, these findings come from observational studies, which show you a correlation, but cannot prove cause and effect. If you knew that all drug addicts drank milk as babies, would you really think that drinking milk as a baby could make you a drug addict? Of course not! That’s a correlation. It’s not cause and effect. Exercise and maintaining a healthy weight have been shown to reduce risk, but what you eat seems less critical.
I agree that it may be tempting to cling to food as protective and/or curative. After all, when cancer takes so much from us, there is a desire to control the factors that we can — including what we eat and drink. I can’t tell you the number of women I know whom, at the time of diagnosis or the completion of treatment, decide they will eat “clean” or “healthy” and are right back in their old ways within months. During the acute phases of surgeries, chemotherapy, and/or radiation there can be a desire to take fear and channel it. By controlling what we ingest, we must be controlling what our body does and what happens to cells, right? Dr. Love reports that this is not as strong a case as one might think.
In my own opinion, if what we ate and drank were that instrumental in determining who got cancer and who had a recurrence, we’d have a cure by now. This is not to say that we aren’t learning more about risk factors and how certain foods can affect likelihoods of getting certain cancers. But for now, we do not have the scientific evidence to support such cut and dry statments about causality with breast cancer.
She shows little insight in her post into the mental reasoning that women make when deciding their treatment options. In fact, I don’t care at all for the way she chides the reader that a diagnosis of breast cancer “is not an emergency” and we should not make a deal with the gods to exchange our breasts for a clean bill of health.
In essence, she suffers from what she has just taken us to task for… equating correlation with causation. After all, just because women want to get rid of their cancer and they opt for a mastectomy, this does not mean they are making the decisions with that tradeoff as their guide. In fact, more often than not, it’s not even necessarily a reduction in breast cancer recurrence that women are after. There are other things they do not want to go through: mammograms, MRIs, biopsies, waiting for test results… and in my case, radiation on my left side which could cause heart damage.
I quote Dr. Love at length here:
We use wishful thinking all the time when making treatment decisions. When a woman is diagnosed with breast cancer her first reaction—understandably since she is scared to death!—is to do anything she can to insure that she is cured and make the fear go away. This fear (accompanied by wishful thinking) often leads people to do things that are not supported by the science.
One example of this is the studies that show that the number of mastectomies for breast cancer has been increasing in the U.S. each year. This is not happening because doctors are finding bigger tumors, or because mastectomy is a better treatment. It is the result of wishful thinking: If I offer my breast or breasts to the gods, I will surely get my life back in exchange! If I have no breast tissue, I never have to go through this again !
In reality, a mastectomy never removes all of the breast tissue. (I am a breast surgeon, so I should know.) The breast tissue does not come neatly packaged so that it be easily removed, which is why there always is some breast tissue left behind in the skin, around the muscle, and at the edges. In reality, the local recurrence rate after mastectomy is 5 to 10% and the local recurrence rate after lumpectomy and radiation is 5 to10%! It is exactly the same! And the cure rates are the same as well.
The critical issue is getting the tumor out with a rim of normal tissue and dealing with any cells that might have escaped—which is what radiation, chemotherapy, and hormone therapy are for. It seems like the more radical the surgery the better the results should be . . . but that is really just wishful thinking!
The rollercoaster ride of cancer is not to be underestimated. Once a patient has a history of cancer, there will be frequent monitoring which brings not only potential additional radiation, but also the knowledge that if there is a question, more testing, including biopsies, will be needed. This emotional up and down means a woman must prepare herself each time that her cancer may have returned.
The main problem with Dr. Love’s piece is that she chides patients for making hasty decisions about their heath care. She reminds us that she’s a breast surgeon for thirty years, after all. And yet, with that experience and scientific background, she should know better than to lump women into one decision-making category and not divide them out based on demographic differences. Oncologists (surgical and medical) both make recommendations to patients based on many variables. Issues such as age, whether this is a first diagnosis of cancer, whether other cancers are in the patient’s medical history, grade of the cancer (how aggressive), what type (including hormone receptor status), and family history all come into play in medical decision-making.
Additionally, women may opt to have a mastectomy or double mastectomy for aesthetic reasons. Some of my initial decision to have a mastectomy on my right side was because I wanted my reconstruction to be symmetrical. After three children my breasts were looking their age. If I had a mastectomy on one side I would have needed surgery to reshape my breast to better “match” the breast that would be made with reconstructive surgery.
When confronted with breast cancer, patients get divided into two camps: there are those who want to do the most possible to treat it and there are those who want to do the least they can while still “taking care of it.” Factors of age, grade and stage of cancer, issues of radiation, reconstruction, BRCA-1 and 2 status and personality type all come into play. I personally believe that the ability to tolerate ambiguity and uncertainty is a key part of the decision-making process.
I don’t say I’m cancer-free: I never say that.
I never say a double mastectomy means I won’t get cancer again.
I know what I had.
I know what I did.
It’s about well-informed choices.
I know what might happen…
In the end, it’s not just about the statistics: it’s about the person.
- a contralateral mastectomy is the removal of the “healthy” breast. In my case actually ended up showing atypical cells that put my odds of getting cancer in that side well above normal [↩]
Link to Twitter
Well said as always!!! Cancer and its treatment is not a ‘one size fits all’ issue. The ‘experts’ are not always right nor do they have all the answers.
Well done, Lisa.
Excellent.
When I read Dr. Love’s post, I was surprised that she grouped everyone opting for double mastectomy under one line of (magical) thinking. I suppose it made for a more dramatic argument to set up that straw man, but not a very effective one.
Yes, there are a bewildering number of factors to consider when making treatment decisions, and each of us has a particular combination of them. You are so right about tolerating ambiguity and uncertainty. When I was trying to make my decisions, Dr. Love’s book gave me tons of information, and the awareness that there’d be no knowing for certain what the exactly correct course would be. Her simplistic post is disappointing.
Lisa,
This is an excellent post with much to say — and surprisingly inform – a physician who we thought was an advocate for women and their individual decisions in confronting cancer.
I was taken aback last week by the tone of her piece and the lack of understanding it communicated….yet she drops these topics carelessly about, like someone scattering birdseed….a little bit here about mammography, another bit here on diet, not so much about exercise, very little about the cancer culture in general. Yet I saw that @garyschwitzer gave it a big thumbs up as did a number of writers.
You helped me nail some of my unease. Far from being misinformed, I think women like you who conscientiously made this decision did so after listening to so many others who followed the good doctor’s advice. They got the lumpectomies and radiation…they found they had a lopsided breast with an arm that didn’t work well. And very possibly were quite sorry for that.
What doctors see as “evidence” is the aftermath of what women live with. Hats off to you for having a clear sense of yourself and what the true choices were.
Thanks so much, Lisa. I’ll read this again.
Love,
Jody
BRAVO, Lisa! I was very resentful after reading Dr. Love’s post last week and you addressed it eloquently. I have read many other breast surgeon’s writings that challenge this decision and they often ask WHY women are making this decision. The answer is pretty clear — why don’t you ASK us? Any survey or questionnaire I have taken is poorly worded and dictates (and/or limits) the range of answers. Most are akin to “how many times a week do you beat your wife?” which assumes behavior. Having a bilateral mastectomy is an extremely personal decision and one that no one should have to make to begin with nor one that should be challenged in this manner. One of my favorite responses to such ignorant questions is: “Would you buy a pair of shoes or earrings that didn’t match?” Clearly, there is much more involved to making a treatment/surgical decision, but the point is made. Glad you are well and so happy that you set the record straight on this agonizing decision. : )
Bravo Lisa!! I LOVE this posting, an incredibly strong response to critics of those of us who choose mastectomy. Doctors need to know there’s not a one-size-fits-all solution to keeping breasts vs. lumpectomy, just as there is no one-size-fits-all breast cancer and treatment.
I originally got that lumpectomy with radiation, in agreement with my surgeon, a breast conservationist. Then I got a re-excision due to dirty margins. And I was deformed. Five years later, I got a scare and, because I have such dense breast tissue, nobody could tell what it was. Another biopsy and lumpectomy showed it was scar tissue, but I was so done with all this.
After 11 months of advocating for myself and achieving doctor buy-in (and firing doctors who wouldn’t buy into this plan), I got my double mastectomy with reconstruction. The decision was made rationally and was medically sound, according to my oncologist and my surgeons.
Like you, I don’t see this as a panacea. Like you, I know that I still have a risk of breast cancer and that not all breast tissue can be removed. But it’s all about improving the odds of survival, isn’t it?
Doctors who believe we are simply rashly jumping into mastectomy should think again. We definitely know what we are doing. We have the right to have our own say about our medical destinies.
I love your line, “In the end, it’s not just about the statistics: it’s about the person.”
This is something that medicine often forgets: doctors are dealing with unique people, each of whom have unique needs. Science can only go so far. Medicine is about treating people.
Rock on, Lisa! By the way, I’m adding your wonderful blog to my blogroll.
— Beth
Lisa,
What a wonderful post. I agree with everything you said. I too had a bilateral mastectomy almost 2 years ago. My oncologist and surgeon both told me that a lumpectomy plus radiation was all I needed and to some extent tried to discourage me with the mastectomy after I had made my decision. I can tell you, there were several factors that went into my decision and it was well thought out. To read what Dr. Love wrote really upset me. She insinuated that I was not intelligent enough to research or think about how this was going to affect my future, etc. I resent that. For all the good D.r Love does, I think she missed the boat on this one. Everyone that knows my personality, knows this was the best decision for me.
I, like you, had cancer in my left breast. I did not want radiation over my heart. Even though they told me radiation is so much better now and they can better direct it, I wasn’t willing to take that chance. (Reason #1)
My cancer was triple negative therefore a bit more aggressive by nature. I did not find the lump myself, it was found during my routine GYN appt. Apparently it was easily felt but I had such lumpy breasts that when I felt that lump the prior few months, it felt like all the other lumps in my breast. I didn’t want that worry of self checks for the rest of my life not knowing what was just lumpy tissue and what was a real lump. Too much for me to bear being the worrier I am. I didn’t trust myself. (Reason #2)
Thinking about future mammograms and future scares and the possibility that a new cancer in the other breast might happen. Just didn’t want to face that. My personality would have not handled that well. (reason #3)
Finally, her throwing out the statistic that the recurrence rate is the same with either surgery was irresponsible and, in my opinion, done to scare women or more to convice them to do what surgery she is pushing. I just don’t buy that the stats are the same. For argument sake, A woman that has a lumpectomy has 80% of her breast tissue remain where as a woman that has a mastectomy has only 5% of her breast tissue remain. Wouldn’t it be statistically a higher chance of recurrence in the lumpectomy strictly based on the fact there is more tissue left to have left over cancer cells. the more tissue you remove, the more chance you are removing cancerous cells. Bottom line, if a woman with lumpectomy has recurrence there is a chance she wouldn’t have had recurrence with mastectomy. But with a mastectomy, if a recurrence happens in the small amount of tissue left, it would have happened anyway if the woman had chosen a lumpectomy.
So do I have wishful thinking? Well if you consider my wish to never have to deal with cancer again, then yes I have wishful thinking. But my decision to have a mastectomy was based on many things, none of which were wishful thinking.
Excellent post and comments. I was also dissatisfied with Dr Love’s piece and surprised at the “sentence bytes” she used.
If her overall goal was to remind people that you can never be certain you’ll get a local or distant recurrence, regardless of which treatment(s) you do, then IMO she oversimplified things to the point where you had to wonder if she thought mastectomies were a waste of time.
I highly doubt that’s her point of view. But, it’s crucial in the crazy 24-hr, over-simplified, extreme-fear-mongering and marketing-driven media environment that experts speak clearly and express what they really mean. There must be no room for ambiguity of message, especially on subjects as grave as breast cancer, and most importantly when the expert is a famous and highly influential physician. So often people express themselves in their own shorthand, leaving out their underlying assumptions–context/qualifying statements are more important than ever.
There are too many sound bytes and catchy headlines about cancer which is such a complex disease. The “general public” is not stupid… it’s ridiculous that in this day and age the media continues to underestimate its intelligence. I would appreciate much, much more attention on the complexity of cancer, and on the one thing you are 100% guaranteed to receive bundled with any cancer diagnosis: the built-in uncertainty package.
The good news is that more and more of us are speaking up with facts and compassion–this post and the ensuing comments are an example of that–and by doing so we are increasingly being heard and therefore creating opportunities to effect more change. Props to Liz Szabo for listening to us, getting some of the important and often overlooked stories/realities out there, and drawing attention to these great breast cancer blogs.
Liza
I just engaged in my own personal version of speaking in shorthand… I did not mention in my comment all the things I appreciated in Dr. Susan Love’s post.
She *is* actually presenting the complexity of breast cancer and raising awareness about the sound-byte pronouncements which result in wishful thinking in the general public.
The part of her post that dealt with the mastectomy/lumpectomy decision is what left me unsettled, and my comment above is about that.
Lisa said this very well:
Part of my frustration has been expressed so eloquently by you– we have to live with the MRI roller coaster, seriously asymmetrical bodies at a young age, etc. there are social and emotional issues that count.
But I would add that Dr. Love glossed over medical nuance too. The rise in prophylactic mastectomies has also coincided with increased numbers of women who find out that they have BRCA or other mutations that increase their likelihood of getting breast cancer. Her statistics don’t account for that. Likewise, I have an oncotype where a prophylactic mastectomy has been shown to increase survival rates for women my age. As Dr. Love herself is usually so clear about, breast cancer is many diseases. I too was surprised by the simplicity of her stance.
Final thought: in my own consultation process — I spoke with 3 surgeons and 5 clinical oncologists before making what was for me the agonizing decision to have a prophylactic mastectomy — I believe doctors from each specialty have their own biases in interpreting the data. All 5 clinical docs felt strongly I should have the mastectomy for the reasosns I stated. But 2 of the 3 surgeons, without citing the particulars of my case, categorically told me it was unnecessary.
Hmm…
You, as always, put reality in such clear perspective. I’ve never had to make such personal decisions regarding treatment for myself but have had to make decisions for my parents.
No one knows how they will react to a situation until they are in the situation.
Thank you for being beautifully intelligent.
Thanks so much for sharing this, Lisa. There is enough controversy and disagreement, with so little evidence, that I don’t think any of us should be second-guessing the decisions of an unknown stranger. As it happens, my situation was not much different than yours…my prophylatic mastectomy showed evidence of cells that might have well become diseased. Not only that, but even 10 years later, with a new diagnosis of MBC, I contentedly sleep with my decisions.
I thought your blog was very good and a terrific example of a thoughtful response to a scary situation. The point in my blog was certainly not to chide women. I think it is critically important that a woman make the decision that makes the most sense to her. I was rather, reacting to women who I talk to who are trying to make decisions without realizing that they don’t have all the facts. If anything I would fault the doctors for this, who are often in a hurry and don’t take the time to explain the biology of the disease and the reason that there are options.
As a result many of the women I meet have unrealistic expectations and are crushed if they get a local or distant recurrence of disease. I am very sorry if I came across as dismissive. I certainly support all the survivors in the world and it is in fact their courage that drives me to do my work trying to find the cause of breast cancer so that we can prevent it all together. During my professional career cancer of the cervix went from cutting out normal body parts to having a vaccine. That is my wish for breast cancer!
Thanks again for all you do.
Susan
A powerful post. With a response, no less, from the person whom you address! I believe that what you do here–create a platform for discussion and inquiry–is so very important. xo
I’m late getting to this post, but am glad I read it. There is a wealth of information within it. I personally believe that each person with a breast cancer diagnosis has the freedom to make their own, informed choice in how to treat and manage it. I was stage 2B, so I am very aware of what may occur down the road.
I chose the most aggressive treatment offered, and I am comfortable with my choice and the early outcome. I applaud your decision Lisa, as difficult as it must have been, with 3 young children. Your decision was yours to make and nobody should dispute that.
There are no definitive answers for us about what, when or if cancer will return. We had it, we fought it and we maintain our health the best we can afterwards. Part of me does and will always feel guilty that I chose to keep my breasts, when other woman have lost theirs. Thank you, as always for this post. You are so generous with your information and knowledge, and sadly….personal experience with this devastating disease. Congratulations to you on the national exposure. You make me so proud. xo
It is so very reassuring to know there are women like you out there, making a difference, sharing your story, helping women feel better about themselves and their own choices, and reminding women (and everyone, really) that it’s all about informed choice. To me, that’s key. Taking charge of one’s health is about understanding all your options and making the decisions that are right for you. Bravo, as always, for the amazing work you do here! I, for one, am so grateful you are willing to help in so many ways.
xo
Well said.
Thank you and your resonses…really helpful. After 14 years, I have a local recurrence. I am going to request double mastectomy.