Prophylactiic mastectomy?

Hope you don't mind I have to jump in here. It is a good article and accurate but I think when it comes to breasts it's more complicated then whether or not you would have a recurrence in the same breast or even in another. There are so many other factors that women take in to consideration such as the amount of screening that is required after a diagnosis and the anxiety that is produced as a result of those screenings. Secondly, would be the fact that unfortunately screening is not the end all be all. For a lot of us the screening couldn't pick up lesions that were found by us. In my case, mine had a part that was superficial up against the skin and the ultrasound still couldn't see it even being right on top of it and that was after mammography showed nothing. So in that case, if I had developed a deeper lesion, it might have been much bigger and more advanced before I could feel it or see it, if they ever could see it. Then thirdly you have the issue of reconstruction. Her example of ears at the end isn't exactly the same comparison in my opinion to breasts. Even though they are "sisters" as some of the docs like to put it, I think they are percieved as being almost like one unit to most women. When you run or move, they both move at the same time. One doesn't move one way and the other another ( I don't think, anyway!) There not seperated by the body in the way ears are. I know in my case, I did not one one breast looking or feeling different than the other breast, if I could help it, because in the end that would have driven me nuts! And there are other considerations such as will I need to do a mastectomy when I'm seventy if it decides to return? Maybe I won't be as healthy then as I am now and things will be much worse? I know everyone is different and there are women who want to keep one natural if they can and I respect that too. So I guess my point is it isn't just about the life or death statistics when it comes to mastectomy vs. lumpectomy. There's s much more. I think most of us understand that but not all Doc's do.

I thought the article was excellent.

There are of course many very good reasons why women choose to have a
BMX. I've seen many women on this board make very thoughtful, very well
educated decisions to have a BMX, fully understanding the pros and cons
and how different aspects of their treatment plans and risk levels will
and won't be affected by this decision. But this line in the article
really hit home with me, because I've also seen this hundreds - no,
probably thousands - of times during my 8+ years on this board: "The majority of the young women in the Dana-Farber survey knew the
procedure wouldn’t prolong life; even so, they cited enhanced survival
as the reason they had undergone it."  I can't tell you the number of times I've seen DCIS women who've had a BMX state something to the effect of "I did what I had to do to save my life."

Additionally, as the article points out, "Many of those same young women underestimated the potential complications and side effects"
of having a BMX. For young women, what can be most significant is the
almost complete loss of natural breast and nipple sensation (those who
joyously proclaim that they still have sensation in the months after
their surgery usually don't realize that those are phantom sensations
that will fade with time). Unless one is planning to go flat, with no
reconstruction, a BMX does not guarantee symmetry - this is one of the
many misunderstandings about a BMX, one that too many women sadly
discover after the fact. Our breasts are not connected to each other,
and most of us have bodies that are uneven side to side. We may not
notice that much in our natural state, but it can have a big effect when
we are having reconstruction because even if both sides are done
identically, the results can look quite different on one side vs. the
other. Of course some women are lucky and everything goes well and the
results look great right from the start, however approx. 30% - 40% of
women who have reconstruction will require revision surgery and the
likelihood of this increases if you have both breasts done vs. just
one. And then there are the longer-term issues of phantom pains,
phantom itching, muscle spasms and pain, costochondritis, shoulder pain,
etc.. Of course not everyone is effected, but a significant percentage
of women do experience one problem or another.

Fear is a natural
reaction when we are diagnosed with cancer, whether it's DCIS or invasive cancer. It's also natural to want
to do anything we can to reduce the fear and any future risk, hence the large numbers of
women who make the decision to have a BMX "for peace of mind". For some
women, this is exactly the right decision, particularly if they go into
it with a full understanding of what's to come and what might happen.
But too often women don't consider all that's involved, or that their
fear is strongest right as they are making this decision.  For most
of us, the fear will ease off naturally over time, and we will regain peace of mind, whatever surgery we
have.

It's true that BMXs are more common in some parts of the U.S. vs. others.  It's also true that BMXs are signficantly more common in the U.S. than in Europe.  And I often wonder if BMXs are more common among women who come to this board (and probably others like it) versus those who simply deal with their doctors.  Reading this board, it's easy to find women who've had lumpectomies who are dissatisfied but it's rare to find women who've had a MX or BMX who are dissatisfied.  When you choose to do something - when you have an option to do it or not - and when there is no going back from the choice you made, what's done is done, then there is no point in complaining about it or second guessing it after the fact.  So even among women who experience significant difficulties after a BMX, you almost always read posts that say "but I'm still glad I had the BMX."  Well, of course, that's the right and healthy thing to say.  But for newbies reading this board, that misrepresents some of the difficulties of having a BMX.  

I had a single MX, not by choice but because I had too much DCIS in a very small breast.  My surgery and reconstruction were a breeze, but living with a reconstructed breast is not the same as living with a natural body part. At the time of my diagnosis, if I'd had a choice, I would have opted for a lumpectomy + rads.  Today, 8+ years later, I still feel the same way.  Of course a BMX is the right decision for many women, but I do believe, as the article states, that too many women are choosing this option out of fear, based on misinformation, and without fully understanding the implications. And to me, that's unfortunate and sad.

I think that we live in a risk averse country, where we try to protect against all kinds of risks to a great degree.  We have professionals who are paid to "baby proof" homes. Women who leave older children at home, alone, are looked upon askance, or maybe even reported on. We have two year olds wear helmets to go on plastic scooters. We want to do whatever we can to control risk.  In terms of bc, that includes the sense that we can control the disease by removing both breasts.  In the case of DCIS, that's mostly likely true, but in the case of invasive breast cancer, mastectomies don't necessarily prevent spread of the disease beyond the breast.  Also, while we are doing our best to stop bc, we are still at risk for millions of other diseases and conditions for which we don't have control, and which we can't even anticipate. 

Kamm,

Hi. I noticed one of your surges was prophylactic oophetectomy. I had a TAH/BSO on July 1. How is your healing? We're you pre menopausal? Have you had any surgical menopause symptoms? 

http://www.forbes.com/sites/elaineschattner/2014/07/29/its-not-just-about-survival-why-some-breast-cancer-patients-opt-for-prophylactic-contralateral-mastectomy/

It's Not Just About Survival: Why Some Breast Cancer Patients Opt For Surgery on Both Sides

Hi Mariael, I had something called the "Canadian Protocol", which is actually very manageable.  It is a somewhat shortened protocol, where the dosage at a given session is higher but there are fewer radiation therapy sessions.  I believe it was something like 16 days of treatment, which works out to just over three weeks (sessions are only on weekdays), as opposed to a 25 day protocol or longer (many have 33 sessions).  I got tired toward the end of the three weeks, and the dense fatigue lasted about two weeks after the treatment was over (common side effect and common time frame for it).  I continued my full exercise regimen and continued to work during the actual treatment time, and modified the exercise in those two weeks that I was very tired (probably skipped it for the most part--but I've actually forgotten the details at this point).  Feel free to backchannel if you have any more questions.

I chose prophylactic double mastectomy because I had abnl mammograms for years. My pathology report after showed "proliferative hyperplasia with no evidence of malignancy".In both breasts. I am happy with my decision as I did not require any other treatment. I did have immediate implants but my skin was too thin from prior lift & augmentation.. I just had bil LD with tissue expanders & am very happy.  This feels soft & full under my axillas and front soft warm and pink. I stretch my back and do arm circles and only feel tight but no pain. I was just afraid of secondary cancers from radiation and wanted peace of mind. I am also very fortunate to have excellent insurance.  My orig surgeon did rec lumpectomy and radiation but I know too many women who have recurrence. Everyone has their own choices and any choice is difficult.  I mostly enjoy these discussion boards because only those who are going thru this process can relate.