The Latest Treatments For DCIS
The reminder that my mammogram was due sat in my ‘in’ box for over a year. Finally, one day I got sick of putting it off, pulled it out, and called for an appointment. The day of the test, 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 about 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 a large area of DCIS, which means “Ductal Carcinoma In Situ”, an early cancer. Since the cancer was stage 0, I had a large lumpectomy. When the lab work came back, they found 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 usual approach for DCIS) or, considering the size of the area and its potential for nastiness, a mastectomy. I wrestled with that decision for a long time, and glued myself to the web, searching for answers. Ultimately, 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 stomach. So I went to the Web and found Dr. Robert Allen in New York City who had developed the procedure of fat-only transfer to rebuild the breast. This is (Prescription drugs without prescriptions) 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.
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 beneath it after surgery, which went unnoticed. After a year of healing, it looks pretty good, and with more surgery I think it will end up fine. The scar across my stomach, 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.
Looking back, 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 without a mastectomy. The reality is that had I had another lumpectomy that got all of the cancer, that would likely have been enough, with radiation, to achieve 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 significant than any statistics. I wish I had made that second pass and assessed the results. 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 are some thoughts to consider:
1. No doctor will care about the outcome of your situation as much as you do. And no doctor will have to live with the end result — you will. Every doctor, as caring as he might be, still has his own outlook, potentially in conflict with yours, simply because surgery is how they make their living. So listen to your doctors along the way, but be your own advocate, and make your decisions based on what is best for you. Learn about what is available, and go after what you want.
2. 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.
3. If a lumpectomy is offered as a treatment, think about exhausting that option first, before jumping into a mastectomy. Sometimes there is no difference in survival rate between the two, and your doctor can better advise you if this may be the case for you. As I mentioned above, the margin around the cancer is a major factor. One big difference between most lumpectomies and a mastectomy is that there is no feeling left in the breast after a mastectomy, which can be a difficult thing to adjust to, although sometimes some sensation will return after a mastectomy. On the plus side, you may be able to avoid radiation by having the mastectomy. Radiation is generally a requirement when having only a lumpectomy.
Naturally, getting rid of the cancer is the most important thing, but consider all available 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. 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 easier to get through, and you are on your feet and well in a matter of days, breast intact. Please don’t think I am suggesting that you take the easy road, when it might affect your survival. Just consider carefully if there is no statistical difference in survival between lumpectomy/radiation and mastectomy.
4. Go after the latest procedures, and go to the best doctors you can. Nipple sparing mastectomy is pretty new, so if you want that, then find a surgeon who will do it for you. Go for a fat-only transfer, the most common of which is called a DIEP flap, the one 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 at diepflap.com. 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. 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.
5. 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.
You may also want to inquire about having a ’sub-cutaneous’ breast reconstruction.With this procedure, the incision is made along the crease under the breast. Surgeons currently prefer going in through the nipple area, but to me, going through the nipple, especially if you want to keep it, can only reduce 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 harder, but if you have a larger, drooping breast, a very large (6-7 inch) incision could be made without ever being seen again. An incision this size would likely allow a surgeon to reach any part of the breast area. There are a few surgeons doing this, but new techniques are slow to catch on. This option, of course, wouldn’t make sense for those with small breasts, where the large incision would show.
6. There are new reconstruction technologies just around the corner. Surgeons today are sometimes hesitant 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 current fat transfer technology, although there are a few surgeons who have their methods. 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. Improved methods in fat transfer are around the corner, however, which will make it easier to fill in dents and irregular areas.
The most promising method, using liposuction to remove fat cells from another area, mixing them with stem cells, and then injecting this mixture into the irregular breast area, may someday become a preferred method for reconstruction. It may become possible, for some cases, to utilize this method to achieve a wide margin around the cancer, while reducing or eliminating the need for a large scar, and preserving a more natural breast. At least one company, Cytori, is making headway on this. Fortunately, breast cancer treatments and surgeries are improving quickly, and in another 10 years, I believe the approach to treating breast cancer, on all fronts, will be very different from what it is today.
Although cancer was not welcome in my life, it did bring one benefit: it was a catalyst for re-evaluation. I had been working at dead-end jobs my whole life, despite having a lot of personal potential, and going through cancer made me realize that I was wasting my potential. So I decided to start a business I have dreamed of for many years, and that business is a reality today. I love to dye wool for rug hooking and other wool arts, so I developed a line of color and a great business plan and now present my Rug Hooking Wool and other art wool for sale.
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