. . My Own Story -- The Long Journey Back to Normal
I was diagnosed with DCIS breast cancer at 49, during a routine mammogram. After a large lumpectomy, we found that the area was bigger than previously thought, and the pathology report showed that my cancer was the nastiest kind -- '9' on the Bloom-Richardson scale of 1-9-- the highest possible rank for aggressiveness and likelihood of recurrence. Lucky me. So, although DCIS is usually treated with a simple lumpectomy followed by radiation, it was recommended that I have a mastectomy to keep the chance of recurrence low. So in December 2008, I had a left mastectomy and reconstruction. Some say that this procedure is one of the most grueling and painful to go through, and I would have to agree--this was by far the the hardest thing I've been through. But I am so grateful that we live in a day when we don't have to die of breast cancer if it's caught early.
I'm fortunate to have a quizzical mind, and through it all, I stayed very near the web. I love having information of all kinds just a keyboard away. I spent about two months searching the web for information -- the best doctors, the latest techniques, the latest breast cancer advances, as much as I could find -- it was painstaking work ferreting out all this information, which was all over the place. As I went, I bookmarked anything that looked interesting. I realized lately that having this information all in one place could be a tremendous help to others, so I am compiling it here for you! I also plan to continue to seek out the latest, and pass it along when I have it. It is likely that you're here because you or a loved one are also battling breast cancer. If so, know that you have a comrade-in arms. Over time there will be a lot of information gathered here, so please take a look at the archives, as well, and poke into all the corners.
See the archive below to navigate through the posts.
Welcome, and I hope you will find some answers here.
Thursday, May 6
Choosing Between Lumpectomy and Mastectomy, and Advocating for Yourself
I have to say that during that time, I recalled reading the many statements on the web by patients who said that they immediately decided to have a mastectomy even if it weren't strictly needed, because they were so determined to get rid of the cancer. Sometimes, especially in the case of BRCA cancers, this is prudent, and in any case I would never question a woman's decision about what to do. For me, at the time I felt a subtle urging to appear this determined to get rid of the cancer, even at the expense of a breast, which was secondary. In my heart, however, I dreaded making the sacrifice, and in fact was willing to take some chances to keep my breast. I felt uncomfortable feeling this way, and kept it hidden.
In my case, since my cancer was stage 0, the primary risk for me was that the cancer would return in the same breast and would have to be dealt with again -- not the risk of metastization that some women face -- and so I felt that I should consider keeping the breast. I do believe, looking back, that my surgeon overstated the risk of the cancer returning, and when I repeated what the surgeon had said to the oncologist, he did agree, but there was hesitation in his voice, and I wish I had pursued the questioning, but the surgeon was sitting right there, and I foolishly wanted to avoid confrontation over my questioning what the surgeon had said. Why? I don't know, but I regret how I handled it, because the oncologist's agreement colored my decision-making the following week. The surgeon also talked about the likelihood of disfigurement with another large lumpectomy, and all this seemed to me as though he were 'selling' the mastectomy, which indeed may have been the case. Surgeons, after all, do make their living from surgery -- the bigger the surgery, the more money.
In the end I decided to have the mastectomy, which I also regret now. Having had both a lumpectomy and a mastectomy, I can tell you that the two couldn't be more different. The lumpectomy was day-surgery, and within three days, I was feeling back to normal. Thankfully my large breast handled the lumpectomy very well -- although the lumpectomy was quite large, it was deep in the breast and I couldn't tell that anything had been removed. The breast simply looked smaller. The mastectomy, on the other hand, was the most difficult thing I have ever gone through physically, including several other surgeries and three births. The surgeon kept the nipple, but I developed a hematoma underneath it which was not caught for several days, and this cut off circulation to the area, causing the loss of the nipple and areola. I have a 22-inch scar running an ugly jagged course across my belly. All feeling is gone in my breast and large portions of my belly. I face another surgery to finish repairing the nipple and fine tune the contour of the belly. My belly button is off to one side, looking rather odd.
I don't want to appear vain, complaining about all this. But the fact is that it is likely that my prognosis would be the same if I had just had another lumpectomy, and I would still have my breast and a normal looking belly, with all feeling intact. Naturally, I would prefer that.
I have often looked back at the logic behind my decision to have a mastectomy. If I had chosen more lumpectomy and radiation, there were two possibilities. Either we would get the rest of the cancer, with a sufficient margin around it all, or there would still be some cancer left. Had we gotten it all that time, I would have been good to go, with only radiation remaining. If there were more to be removed, I would be left with the same decision again, which I could wrestle with then. I wish I had had the presence of mind to really think it through this way. I also wish I had found someone to advise me, who did not have a vested interest in doing a mastectomy (as the surgeon did, whether it be to perform a more lucrative surgery or to protect himself from a potential malpractice lawsuit, were he to recommend more lumpectomy, only to see the cancer return later).
Here is the salient point: The most important criteria in determining how likely an early or non-metastasized cancer is to return is MARGIN. This is the area of clean, cancer-free tissue that surrounds the cancer being removed. The larger the margin, the less likely the cancer is to return. The reason is that if cancer is going to return, it will generally return right near the area where it was in the first place, so a nice big margin catches those few cells that remain outside the cancerous area, leaving radiation and/or chemotherapy to clean up the rest. That is the bottom line, and it should be considered as you contemplate what to do. If it is appropriate in your case, go after that margin.
Here is an interesting study article about DCIS specifically that may help you sort out your options:
And here is another basic pros and cons discussion about lumpectomy vs. mastectomy on breastcancer.org, an all-around good resouce for information.
I can never give you definitive advice about all this, but I share this information so that you can make an informed decision. If you choose to have a mastectomy, even if you don't strictly need it, then at least you are doing so understanding what you are getting into. Of course if there is no choice in your situation, at least you have some peace of mind knowing that this was the case, instead of wondering if you should have done something else.
Another thing to consider when talking to your surgeon (and I hope you are a better advocate for yourself than I was) is to ask about incisions. That first surgeon planned to put the incision on the inside curve of my breast for the lumpectomy, but I asked if he could hide it somehow. It turned out that he could put the incision at the edge of the areola -- less convenient for him, but in the end I would not be able to see the scar. Why he would not do this as a matter of course is testimony to how surgeons may think -- they will do what is expedient, often without thought for the 'small' considerations of what might be important to the patient -- like not having a scar on the most visible part of the breast for the rest of her life.
In addition, most mastectomies are done going through the nipple, which is an odd choice to me, especially if you want to keep it. Certainly cutting around half of it to gain access to the breast will compromise circulation. I questioned several surgeons about cutting along the crease at the bottom of the breast, (known as a 'sub-cutaneous' incision) creating an incision that, for most women with a medium to larger breast, will never show again, when the breast sags down onto it. I was told repeatedly that it is impossible to reach all the areas of the breast this way, but how can that be, when a large 6-7 inch incision could be made, which would allow the entire breast to be turned inside out, for Pete's sake? As testimony to this possibility, some surgeons are doing mastectomies this way, and I think that others are just stuck in a rut, frankly. They do it that way because, well, they have just always done it that way, and so they do it that way because that's the way they do it. And that's why they do it that way -- because they do it that way. I often wondered during this time how much more thought they would put into the surgery process, were they themselves faced with losing their own penises! Dark thoughts, I know, but it's the truth. Nobody cares about you the way that you do. So often then, they don't think past their surgical mask, because they don't have to live with the result. They simply go on to the next patient, and earn the next buck. I longed for a doctor with an inquisitive mind who was willing to question everything he does, always looking to improve it.
Another area where I recommend asking questions is in the type of procedure your surgeon recommends, should you need a mastectomy. We are fortunate to have a large medical center near us -- Dartmouth Hitchcock, one of the best in the country, and boasting a brand new cancer center. Regardless, when I went for a consultation on mastectomy in 2008, I found that they did not offer the latest reconstruction procedures, which surprised me. There was no one in the department who could offer me a fat-only transfer (such as the DIEP flap) for reconstruction, or a nipple-sparing mastectomy, which have become the gold standard for reconstruction in those patients who are candidates. In fact, the surgeon I talked to said that she preferred the TRAM flap method, which uses the rectus abdominus muscle along with fat, as being a superior procedure. It's hard to imagine that is true, because removing muscle leaves the patient open for problems in the alignment of their core, which happened to both of the women whom I know personally who had the procedure, and who would not choose it again. I know that many women come through the procedure fine, but I don't think it could be said that the TRAM is superior to the DIEP flap procedure, for those women who have enough fat for the DIEP flap.Here is a Wikipedia article that covers the basic differences between the two:
I do know, however, that the DIEP flap and its variations are much more difficult to perform, requiring up to a year of additional training in micro-surgery. So rather than recommending the TRAM procedure as superior, I would have preferred that this surgeon tell me that there was not a surgeon on staff who had the additional training to offer it. In addition to this, the surgeon who had performed the lumpectomy, when I informed him that I wanted a nipple sparing mastectomy, lectured me about how close to the nipple my cancer was, when we both knew that the cancer was near the chest wall in my 38D breast -- if ever there was a candidate for nipple sparing, in terms of cancer safety, I was it. All of this disturbed me, as I felt that I was being 'sold' procedures that I didn't want, but that the surgeons preferred for one reason or another. In the end, I put on 40 lbs. to get the fat I needed for a DIEP flap (that was fun) and went to New York City for that procedure.
The practice I visited is one of the foremost in the area of DIEP flap, in fact Dr. Robert Allen is the creator of the procedure, and I recommend going to him only. He was the doctor I was looking for, and our conversation revealed why he is the pioneer of this procedure -- he has an inquisitive, questioning mind. Unfortunately, insurance coverage difficulties took long enough to throw me into a time period where he did not have a lot of openings for the next month or so, and I had already waited several months for more surgery, with an unknown amount of cancer in my breast. So in the end, (another decision I regret) I saw an associate for surgery, and I believe I would have been happier with the outcome had I waited for Dr. Allen. He is a charming Southerner, reminiscent of that 'Matlock' character done by Andy Griffith, with his rumpled linen suits, and he has a gentle, friendly, and honest nature that is very comforting to a woman about to lose a breast. I see the practice has added a specialist in the area of nipple-sparing mastectomy, so they continue to be on the cutting edge.Visit them here: DIEP Flap in NY
I don't want to badmouth surgeons, but, again, they will never care as much about your body as you do, even a doctor so kind as Dr. Allen. They will ultimately look after their own interests, so keep this simple fact of human nature in mind, and don't be afraid to speak up, the way I was. Look out for yourself. Look out for yourself. Look out for yourself. Did I say that enough? Look out for yourself. It may be that no one else does.