. . 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.
Saturday, March 16
Time to Finish
It turns out that before I ever had cancer, I had a fairly large diastatis recti -- a separation between the two sections of the rectus abdomini muscles. This is fairly common, and had occurred during my three pregnancies, with the stretching of all those muscles, most notably with my last child, who weighed in at nearly 10 lbs. at birth. I was enormous, and looked like I was carrying twins.
The original reconstructive surgeon had assured me that he would be repairing any diastasis during the harvesting of fat (along with several other unkept promises he made), but this was apparently not done. The other issue with my belly, a possible side effect of the Diep flap procedure that I had not come across in all my research, is that many nerves that serve the abdominal muscles are cut during the harvesting of fat, even though the muscle, itself, is not touched. In a small percentage of women (my luck holding, naturally) this produces a weakening and prolapsing of the abdominal muscles. So between these two issues, I looked like I was nearly 'full-term'. Wearing normal pants has been impossible. Suspenders would probably have helped, but they are just not fashionable, ya know?
I contemplated returning to my original surgeon (Dr. Allen practice in NYC), and in fact I contacted them, and sent along a picture of my current scenario at their request. After three subsequent unreturned phone calls, I decided to go elsewhere, since I had not been happy with the first procedure anyway. I talked to my insurance company and they suggested Mass General in Boston, a hospital on my plan, and one that I already knew has a good breast cancer/reconstruction program. I looked on their site and chose Dr. Amy Colwell -- I liked her background and the fact that she had written a number of papers. She demonstrated an inquisitive mind, so I thought she might be just what I needed--and she was!
9 days ago, I went under her knife. She repaired the diastasis and put a mesh across my entire belly to bring everything into alignment again. She moved my belly button to center, and rebuilt it using stitches more on the inside of the folds, rather than around the outside of the belly button, which just doesn't look right or natural. She also resected my abdominal scar, making it into a nice 'U' shape about an inch lower than it had been. She removed as much of the patch on my left breast as she could and built me a new nipple using the scar tissue remaining on the breast. This tissue has gradually softened and some of it has reverted to normal nipple skin. So she worked with that skin, rather than using a skin flap, and we both agree that the result will look more natural. In the process, she made the breast a size smaller, in order to remove as much of the patch as she could -- nearly all of it went, with only a small strip left at the bottom of the breast. She performed liposuction on the right breast to make it match the new, smaller left one. She didn't want to do the lipo, as she feels this makes the breast flatter. But I persisted, telling her that I would prefer a slightly flatter breast to having scars on that breast, as well. We checked to see if the insurance would cover this part, which they did, and she did it for me.
Naturally, at this point I'm still in bandages, and have one drain still hanging from the abdominal scar, but I can already tell you that the result will be something I'll be happy with. Not perfect, of course, but I will feel more like myself. I had purposely gained 40 lbs. way back then to have enough belly fat to harvest, and only about 15 lbs. of this has come back off, to my continued annoyance. In the past I have always been able to take weight off relatively easily, and it has just been impossible for me this time. But I think I may have stumbled across the answer -- I am now supplementing iodine, and there is a whole lot of evidence that most of us are iodine deficient in the U.S., which prevents the thyroid from making thyroid hormone, making it difficult to lose weight. i will be writing more on this in my other blog, so check it out there.
I will likely post some before and after pictures, to show just how much can be done to make your final result acceptable after everything has gone wrong. I would like to say again that Dr. Robert Allen is an excellent surgeon and I loved his approach -- sympathetic, creative and friendly. Had I been in his care, I have no doubt that my result would have been better. But with cancer still in my breast, I felt I could not wait several months for him, and instead went to his partner, Dr. Joshua Levine. I was really quite unhappy with the result I got in his care, so I cannot recommend him. I felt that he tried to cram me into his canned method, and that would be the only thing he would do, regardless of what I wanted. He didn't listen to my concerns at all, and I always had the unsettling feeling that he was not giving me the whole story. And, needless to say, the results were unacceptable. I hate to badmouth anyone, but I'm also here to help those who are looking for information.