DCIS Breast Cancer at 49 – A Most Unexpected Event

The reminder that my mammogram was overdue sat in my ‘in’ box for over a year. I kept putting it off to the side, as I went through the pile day-by-day. Finally, one day I got sick of putting it off, pulled it out, and called for an appointment. That day, the technician was very friendly, chit-chatting as she took the pictures, but as she looked at the results on her monitor, the chatting stopped, and she seemed more reserved. I went home and told my husband that I felt unsettled by the test, and that I would not be surprised if I got a call about the results. The call came the very next day. The doctor described the findings as ‘suspicious’ and asked me to come back in for more pictures and a biopsy. That accomplished later in the week, the next call (the one I dreaded) came telling me that I had DCIS, which means “Ductal Carcinoma In Situ”, an early cancer. They had found it in my left breast, near the chest wall. Every nursing mother retains small flecks of calcification in her milk ducts from the milk she produced. Sometimes these flecks become cancerous, and this type of cancer is not generally caught with a manual breast exam until it is more advanced. In my case, having PCOS, which impedes or prevents regular ovulation and the progesterone that is released with it, was likely a contributing factor, according to the oncologist. Because of this lack of progesterone, I had had unopposed estrogen in my system for abnormally long periods of time throughout my life, and my cancer was estrogen positive. (Let this be a warning to those with PCOS — don’t miss those mammograms!)

The thought that I had put off having a mammogram for so long, while DCIS quietly grew in my breast, was sickening. I have consoled myself many times since then with the thought that, had I gone in on time, the DCIS might have been missed, being too early. As it was, one year later, the areas were small and hard to see. But who knows? I have stopped beating myself up now — it is what it is.

So, since the cancer was stage 0, I had a sizable lumpectomy, about the size of a deck of cards. When the lab work came back, we discovered that not only was there more cancer left in the breast, but on a scale of 1-9 for ‘badness’, mine was a 9. So the surgeon gave me the option of another lumpectomy, (the normal approach for DCIS) or, considering the size of the area and its potential for nastiness, a mastectomy. I wrestled with that decision for many days, and glued myself to the web, searching for answers. In the end, I decided to have the mastectomy, with immediate reconstruction.

My research told me that I could hope to have a ‘skin-sparing and nipple-sparing’ mastectomy, with reconstruction using fat from my belly. We live near a tertiary medical center, but after a consultation with them, I found that they didn’t offer a nipple-sparing option, and they still did breast reconstruction using the rectus abdominis muscle (TRAM flap) which, I knew from the experience of two close friends, was not preferable. In fact, the loss of the muscle for one friend had left her in chronic pain for several years until she found a physical therapist who helped her realign her core through massage and exercise. No thanks. So I hopped on the Web and found a doctor in New York City who had pioneered the procedure of fat-only transfer to reconstruct the breast. This is more difficult than the transfer of muscle, because the blood vessels in fat are more minute than those in muscle, requiring extra training in microsurgery to accomplish.

So I went straight to that practice. I could not get Dr. Robert Allen (who pioneered the procedure), without waiting longer than I wanted to, so I went with his partner, Dr. Levine. Overall, I am happy with the results. The shape of the breast itself is great, and the fat transfer was successful, which is no small 乳房水囊 thing in itself. Unfortunately, the nipple/areola did not fare well, due to a blood clot underneath it after surgery, which was not caught. Dr. Levine wanted to go ahead and remove the nipple/areola but I was determined to keep it and see what happened. This meant letting the area die off to the extent that it would from the lack of circulation, and then see what was left. Now, a year later, the nipple itself is gone, and the areola looks pretty scarred up, but I am hopeful that with tattooing to make the scarred areola match the color of the other side, and with a reconstructed nipple, that it will end up looking good. The abdominal scar, on the other hand, is 20″ long and there is no other way to describe it but ugly, although I hope it will improve as the scar fades.

In retrospect, I think I would have done things a little differently. I let the first surgeon scare me with the statistics of how likely the cancer was to return if I did not have a mastectomy. The reality is that had I had another lumpectomy that got all of the cancer, that would probably have been enough, with radiation, to give me the same survival rate that I have now, having had a mastectomy without radiation. It turned out that there was not much cancer left after the lumpectomy — another pass would probably have gotten it all, plus a nice wide margin around the cancerous area, which is the major determining factor of whether this particular cancer will return. A wide margin is key, and far more meaningful than any statistics. I wish I had made that second pass and assessed the results before moving on to a mastectomy. If I had reservations at that time, I could always have continued on with a mastectomy. There is no going back, however, once the mastectomy is done.

Here is one important thing that was driven home to me during this experience. No doctor will care about the outcome of your situation as much as you do. And no doctor will have to live with the outcome — you will. Every doctor, as caring as he might be, still has his own agenda, potentially in conflict with yours, simply because surgery is how they make their living. I admired Dr. Allen for coming right out and saying this voluntarily. Breast reconstruction surgeons, he said, will tend to advocate mastectomy — it’s what they do best, and it provides the most definitive defense against cancer. There is absolutely nothing wrong with this, but you must factor your surgeon’s bias into the equation. So listen to your doctors at every stage, but be your own advocate, and make your decisions based on what is best for you. Educate yourself about what is available, and go after what you want.

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