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DCIS Breast Cancer at 49 - A Most Unexpected Event

A reminder that my mammogram is late sitting in the 'inside' box. for over a year. I kept putting it to the side as I went through the pile everyday. Finally, one day I was sick of putting it down, pulling it, and calling an appointment. That day, the technician was very friendly, chit-chatting as he took pictures, but when he saw the results on his monitor, the chat stopped, and he seemed more reserved. I went home and told my husband that I was uncomfortable with the test, and I wouldn't be surprised if I got a call about the result. The call came the next day. The doctor described the discovery as "suspicious" and asked me to come back for more pictures and biopsies. Later that week, my next call (which I dreaded) informed me that I had DCIS, meaning "Ductal Carcinoma In Situ", an early cancer. They found it in my left breast near the chest wall. Every nursing mother keeps a small piece of calcification in her milk tract from the milk she produces. Sometimes this stains become cancerous, and this type of cancer is generally not captured by manual breast exams until further advanced. In my case, having PCOS, which prevents or prevents regular ovulation and progesterone released with it, may be a contributing factor, according to oncologists. Because of this progesterone deficiency, I have estrogen unused in my system for an abnormal period of my life, and my cancer is estrogen positive. (Let this be a warning to those with PCOS - don't miss them mammograms!)

The thought that I had delayed having a mammogram for so long, while DCIS was slowly growing on my breast, was painful. I have entertained myself many times since then with the thought that, as I have left in time, DCIS may have missed, too early. As it turned out, a year later, the area was small and difficult to see. But who knows? I've stopped beating myself now - it's what it is.

So, since the cancer is level 0, I have a huge lumpectomy, about the size of the deck card. When the lab came back, we found that not only was there breast cancer, but on a scale of 1-9 for 'crime', I was 9. So the surgeon gave me another lumpectomy option, (a common approach to DCIS) or, given the size of the area and the potential for nastiness, mastectomy. I struggled with that decision for several days, and was gazing at the web, searching for answers. In the end, I decided to have a mastectomy, with immediate reconstruction.

My research tells me that I can hope to have a 'mastectomy'. the 'dull skin and nipple', with the reconstruction using fat from my stomach. We lived near the tertiary medical center, but after consulting with them, I found that they did not offer a tornado option, and they were still undergoing breast reconstruction using a rectal abdominis muscle (TRAM flap) which, I know from two close friends, Yes. In fact, losing a muscle to a friend left her in chronic pain for several years until she found a physical therapist who helped her reorganize her core through massages and exercise. No thanks. So I jumped on the Web and found a doctor in New York City who pioneered a fat removal procedure just to reconstruct the breast. This is more difficult than a muscle transplant, because the blood vessels in the fat are narrower than the muscles, requiring additional training in microscopic surgery.

So I went straight to the practice. I can't get Dr. Robert Allen (who pioneered the procedure), without waiting longer than I wanted, so I went with his partner, Dr Levine. Overall, I'm happy with the results. The shape of the breast itself is great, and the transfer of fat is successful, which is no small thing in itself. Unfortunately, the nipple / isola does not respond well, as blood clots beneath it after surgery, which is not captured. Dr Levine wanted to go ahead and remove the nipple / areola but I was determined to keep it and see what happened. This means letting the area die to the extent that it evaporates from the lack of circulation, and then seeing what's left. Now, a year later, the nipple itself is gone, and the isola looks pretty scarred, but I hope with tattooing to make the radiated areola match with the other side colors, and with the redesigned nipple, it will end up looking good. An abdominal scar, on the other hand, is 20 "long and there is no other way to describe it but it is ugly, though I hope it will increase with fading wounds.

In retrospect, I thought I would do things a little differently. I let the first surgeon scare me with statistics on how the cancer would return if I didn't have a mastectomy. The fact is that I had another lumpectomy that got all the cancers, which may have been enough, with radiation, to give me the same survival rate that I have now, after undergoing a mastectomy without radiation. It turns out there aren't many cancers left after a lumpectomy - another pass would probably get it all, plus a good wide margin around the cancerous area, which is a major determinant of whether the cancer will return. Broad margins are key, and far more valuable than any statistics. I wish I had made a second pass and evaluated the results before moving on to mastectomy. If I have a reservation at that time, I can continue with mastectomy. However, no one will return when the mastectomy is complete.

Here is an important point that was brought home to me during this experience. No doctor will care about the outcome of your condition as much as you do. And no doctor has to live with the result - you will. Each doctor, as he or she still has his or her own agenda, is potentially at odds with you, simply because surgery is their way of life. I admire Dr. Allen to come out and say this voluntarily. Breast reconstruction surgeons, he said, will tend to undergo mastectomy - that's what they do best, and it provides the most definitive defense against cancer. There is not necessarily anything wrong with this, but you must prove your surgeon's inclination towards equality. So listen to your doctor at every level, but be your own advocate, and make your decision based on what is best for you. Educate yourself on what you have, and follow what you want.

Here are some thoughts.

1. Remember that Federal law requires your insurance to cover reconstruction. They should also include other breast matches, if necessary, so 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 lumpectomy is offered as a treatment, consider seriously exhausting that option, before jumping into mastectomy. In many cases, there is no difference in survival rates between the two, and your doctor may give you better advice if this may be true in your case. As I mentioned above, the margin around cancer is a major factor. If I had additional lumpectomy, I would have very little evidence today that anything had happened. One major difference between most lumpectomies and mastectomy is that there is no feeling left in the breast after mastectomy, which I find very frustrating. After the lumpectomy, I still had a feeling. Sometimes the sensation returns after a mastectomy, at least in part. With my larger breasts, I doubt it will taste much, and this is a change in the quality of life that I will live longer. I avoid radiation with mastectomy, but this is the only real benefit I worry about, though it is important. Radiation is generally necessary when having lumpectomy.

Naturally, getting rid of cancer is Job One. But consider all your options, and don't just take the most radical approach if you don't have to, to achieve the same survival rate. Consider the quality of your life, too, if you have a choice, and don't be shy to do so. Strangely enough, I feel compelled to show others that sometimes, I just want to get rid of the cancer, rather than seem speechless before living it by keeping my breasts look and feel. Don't make my mistake. Having a mastectomy and reconstruction will be one of the hardest things women have ever gone through, and it's not a procedure that needs to be done for any reason other than a woman who is sure it is the best for him in everything. Lumpectomy, on the other hand, is easier to reach, and you are on your feet and in a few days, your breasts are intact. Please don't think I recommend taking the easy way out, 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 procedure, and go to the best doctor you can. The procedure for the nipple movement is relatively new, so if you want it, then get a surgeon who will do it for you - it's still not a weak or widespread procedure. Go for fat transfer only, most commonly called DIEP flap, pioneered by Dr. Allen. I've also noticed that the practice has added partners who specialize in breast cancer mastectomy since I saw them for my surgery, so they should be visited. Or try Sloan-Kettering - they seem to have the most comprehensive overall approach to breast cancer reconstruction, from all my research, and will offer the same option. I found this out after I was committed to Allen's smart insurance practices, and I didn't want to get started, but I found that Sloan-Kettering was a good choice. Lastly, it is sometimes possible to move the nerves along with the fat, which may increase the chance of regaining some sensation in the breast, so ask your surgeon about this.

4. Ask all incisions. I stopped the surgeon first and asked him if he was already to put a slice right in the middle of my breast, where I would always see it. Turns out he's not, it's just easy there. So don't worry about 'inconvenience'. your surgeon for a few minutes, when you may have an unnecessary scar for years. All questions. It would be nice if we didn't have to, but as mentioned above, no one will care about the results as much as you do.

You may also want to ask about having breast reconstruction 'sub-cutaneous'. This is where slices are made throughout the folds below the breast. Surgeons now love to go through the tornado, but for me, through the nipple, especially if you want to keep it, can only compromise blood flow, putting the area at risk. They will tell you that subcutaneous slices make the breast tissue more difficult, but I never understood this. If you have larger breasts, sagging, very large (6-7 inches) slices can be made without ever being seen below the breast. An injection of this size will certainly allow the surgeon to reach any part of the breast area. To prove my point, there is some surgeons do this, but new techniques are slow to catch on, as surgeons wait for others to take risks first. This option, of course, does not make sense for those with small breasts, where large incisions will be indicated.

5. There are new reconstruction technologies around the corner. Today's surgeons sometimes refuse to do a very large lumpectomy or quadrantectomy (where a quarter or more of the breast is removed) because it will undermine the breast, and reconstruction of this irregular shape is more difficult with today's fat removal technology, though there are some surgeon who will undergo partial reconstruction with mini fat closure. Often, if the need for a lumpectomy becomes too large, a surgeon will recommend a mastectomy, since establishing a breast-shaped hole, however, is easier. That's good for them, but then you have to live with the results. The advanced method of fat transfer is around the corner, however, which will make it easier to fill the ducts and irregular areas, for those with bigger cancer, closer to the surface, or for those with smaller breasts, who are more easily swept by lumpectomy . One method, using liposuction to remove fat cells from other areas, mixing them with stem cells to improve the survival of fat cells, and then injecting the mixture into irregular breast areas may someday be the preferred method for reconstruction. I am not an expert, but I believe it would be possible, at least in some cases (depending on the size and location of the cancer), to use this method to achieve the desired margin around the cancer, while reducing or eliminating the need for a 20-inch wound, while ultimately maintaining a more natural breast, with a greater likelihood of retaining nipple and sensation. At least one company, Cytori, is heading in this direction.

Here's an FYI bonus - did you know that there are some surgeons out there doing breast reduction using liposuction only? A great alternative is if you need to have other breasts reduced to fit the rebuilt one. (Who needs big breast surgeries too?) Also, it is a more common alternative to regular breast reduction. Use this search term "tumescent breast reduction" to find more information on the web.

Fortunately, the treatment and surgery of breast cancer is improving rapidly, and in the next 10 years, I think the approach to treating breast cancer, in all fields, will be very different from what is happening today.

Susan Sylvia Copyright 2010


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