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 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.
Here are some thoughts.
1. Remember that Federal law requires your insurance to cover reconstruction. They must also cover the matching of the other breast, if need be, so that you end up with a “matching set”. And many insurance HMOs or PPOs will allow you to go elsewhere if you can prove that your group does not offer the procedure you want.
2. If a lumpectomy is offered as a treatment, seriously consider exhausting that option first, before jumping into a mastectomy. In many cases, there is no difference in survival rate between the two, and your doctor can better advise you if this may be true in your case. As I mentioned above, the margin around the cancer is a major factor. Had I gone with an additional lumpectomy, I would have very little evidence today that anything had ever happened. One big difference between most lumpectomies and a mastectomy is that there is no feeling left in the breast after a mastectomy, which I have found very disappointing. After the lumpectomy, I still had full feeling. Sometimes sensation will return after a mastectomy, at least partially. With my larger breast, I doubt I will ever have much feeling, and this is a change in the quality of life that I will live with for a long time. I avoided radiation by having the mastectomy, but this was the only real benefit as far as I was concerned, although an important one. Radiation is generally a requirement when having a lumpectomy.
Naturally, getting rid of the cancer is Job One. But consider all of your options, and don’t just take the most radical approach if you don’t have to, to achieve the same survival rate. Consider your quality of life, as well, if you have options, and don’t be ashamed for doing so. Oddly, I felt compelled to demonstrate to others, at times, that I only wanted to get rid of the cancer, instead of appearing to be vainly pre-occupied with retaining the look and feel of my breast. Don’t make my mistake. Having a mastectomy and reconstruction will be one the most difficult things a woman ever goes through, and it is not a procedure to be done for any other reason than a woman is certain it is best for her in every respect. The lumpectomy, on the other hand, is more easily accomplished, and you are on your feet and well in a matter of days, breast intact. Please don’t think I am advocating taking the easy road, when it might compromise your survival. But think twice if there is no statistical difference in survival between lumpectomy/radiation and mastectomy.
3. Go for the latest procedures, and go to the best doctors you can. Nipple sparing mastectomy is relatively new, so if you want that, then find a surgeon who will do it for you — it is not yet a foolproof, or widespread, procedure. Go for a fat-only transfer, the most common of which is called a DIEP flap, pioneered by Dr. Allen. I also see that his practice has added a partner that specializes in nipple sparing mastectomy since I saw them for my surgery, so they are worth a visit. Or try Sloan-Kettering — they seem to have the most comprehensive overall approach to breast cancer reconstruction, from all of my research, and will offer similar options. I discovered this after I had committed to the Allen practice, insurance-wise, and I didn’t want to start over, but I found that Sloan-Kettering is an excellent option. Lastly, it is also sometimes possible to transfer a nerve along with the fat, which may improve the chances of regaining some sensation in the breast, so ask your surgeon about this.
4. Question all incisions. I stopped the first surgeon and asked him if he had to put the incision right in the middle of the inner half of my breast, where I would always see it. It turns out he didn’t, it was just easier there. So don’t worry about ‘inconveniencing’ your surgeon for a few minutes, when you might have an unnecessary scar to look at for years. Question everything. It would be nice if we didn’t have to, but as mentioned above, no one will care about the outcome the way you do.
You may also want to inquire about having a ‘sub-cutaneous’ breast reconstruction.This is where the incision is made along the crease under the breast. Surgeons currently favor going in through the nipple area, but to me, going through the nipple, especially if you want to keep it, can only compromise the blood flow, putting the area at risk. They will tell you that a sub-cutaneous incision makes reaching the upper area of the breast tissue more difficult, but I never understood this. If you have a larger, sagging breast, a very large (6-7 inch) incision could be made without it ever being seen again under the breast. An incision this size would certainly allow a surgeon to reach any part of the breast area. To prove my point, there are some surgeons doing this, but new techniques are slow to catch on, as surgeons wait for others to take the risks first. This option, of course, would not make sense for those with small breasts, where the large incision would show.
5. There are new reconstruction technologies just around the corner. Surgeons today are sometimes reluctant to do a very large lumpectomy or quadrantectomy (where one-quarter or more of the breast is removed) because it will disfigure the breast, and the reconstruction of these irregular shapes is more difficult with today’s fat transfer technology, although there are a few surgeons who will do a partial reconstruction with a mini flap of fat. More often, though, if the need for lumpectomy becomes too great, a surgeon will suggest a mastectomy instead, because creating an even breast-shaped mound is, simply, easier. That’s great for them, but then you have to live with the result. Advanced methods in fat transfer are around the corner, however, which will make it easier to fill in dents and irregular areas, for those whose cancer is larger, nearer the surface, or for those with smaller breasts, which are more easily disfigured by a lumpectomy. One method, using liposuction to remove fat cells from another area, mixing them with stem cells for improved survival of the fat cells, and then injecting this mixture into the irregular breast area, may someday become a preferred method for reconstruction. I am no expert, but I do believe that it will become possible, at least in some cases (depending on the size and location of the cancer), to utilize methods like this to achieve that desirable wide margin around the cancer, and at the same time reduce or eliminate the need for a 20-inch scar, while ultimately preserving a more natural breast, with perhaps a greater chance to preserve nipple and sensation. At least one company, Cytori, is making headway on this.
Here’s a bonus FYI — did you know that there are a few surgeons out there doing breast reduction using only liposuction? A great alternative if you need to have the other breast reduced to match the reconstructed one. (Who needs major surgery on the other breast, too?) Also, it’s becoming a more common alternative for regular breast reduction. Use these search terms “tumescent breast reduction” to find more info on the web.