. . 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, June 19

Thoughts on Keeping Your Nipple

If you are newly-diagnosed with breast cancer, and this post is one of your first reads on the subject of reconstruction, you may be surprised to know that keeping the nipple is not standard in breast reconstruction. I know I was shocked to learn that the nipple has always been removed as a matter of course, even with a 'skin-sparing' mastectomy. I had always imagined that the breast would just be scooped out like a melon, and new 'filling', whatever it may be, put in. Learning that I would probably lose my nipple came as devastating news to me, I don't mind saying. That was the point at which I became pretty depressed about my situation.

Indeed, for many of us who face mastectomy, losing the nipple seems to be the most disfiguring part of the surgery. This fact is finally starting to percolate among surgeons who have been taking a harder look at the true risks associated with keeping the nipple. For a long time since breast conservation surgery became standard, it was thought that the nipple area would always be at higher risk for harboring cancer cells, since all the ducts in the breast lead to the nipple. But as surgeons actually began listening to their patients who wanted to keep their nipple, they looked harder at the data to see if this was really true, and it was found that for most women who don't have cancer near the nipple, or Paget's disease, the nipple could often be kept with little risk of cancer recurrence in that area. Some surgeons, in fact, completely hollow out the nipple area, leaving a hollow cone that can be refilled with other tissue.

Many surgeons are learning just how much keeping the nipple improves the quality of life for a woman, and may greatly improve her morale post-op, especially if she ends up facing an ongoing battle with cancer . Sometimes the small things really do matter. I remember sitting in one reconstructive surgeon's office and he said to me, "Mastectomy is such a harsh term. We prefer to say, "Gland Replacement Therapy". I appreciated that statement, because when all of the breast skin, including the nipple, is kept, then it really is just a matter of replacing the mammary tissue and fat in the breast with something else. You still have your breast, although there may be little to no feeling. This is, indeed, a far cry from classic mastectomy, where a woman is left with no breast, and only a scar running across the flattened area. As far as I'm concerned, anything that brings one closer to having the breast they used to (or in some cases an even better breast) is a blessing!

Nipple sparing mastectomy (NSM) is newer, but it is slowly becoming the gold standard for reconstructive care, and will continue to be. More and more practices around the country are offering this option, so seek them out. Below is a short list of those bigger names that offer NSM. There is certainly nothing to lose if your surgeon feels you are a candidate, and the worst that will happen is what happened to me -- the nipple will not do well, and you'll end up having some reconstruction. Personally, I comfort myself, knowing that I tried.

A simple search for any of these names, along with the terms 'nipple sparing' will probably take you where you need to go.

Cleveland Clinic (I believe the procedure was pioneered here)

University Hospitals, Cleveland (I find Cleveland to be a hub for many advanced medical procedures. You lucky Ohioans!)

Sloan-Kettering, NYC

Robert Allen practice, NYC

Mayo Clinic

Paoli Hospital, Paoli, PA

And here is a wonderful thread on breastcancer.org with many names from all around the country, along with personal recommendations.


Good Luck!

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