. . 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, March 16

Newer Radiation Options

In 1999, researchers in Milan, Italy, started experimenting with a specialized radiation treatment on breast tissue during reconstruction surgery, to kill any potential cancer cells remaining. Radiation was focused directly on the area where cancerous tissue had just been removed. In particular, the tissue immediately under the nipple was targeted for this 'spot radiation' technique, because the nipple has long been considered a harbinger of cancer cells after mastectomy, which is why the nipple is routinely removed. The hope was that this radiation treatment would make it possible to safely retain the nipple in many cases. The technique was known as intraoperative radiotherapy, abbreviated as either ELIOT or IORT. The study concluded in 2007, and since then the technique, also known as TARGIT (targeted intraoperative radiotherapy), has been trialed in the U.S., and is emerging as a viable option to whole-breast radiation. Other parts of the breast are now 'spot irradiated' wherever a cancerous lesion has just been removed, not just the area under the nipple. In some cases, this radiation technique may mean avoiding a mastectomy.

Results have been good, with short-term survival rates roughly similar to whole-breast radiation. The technique will almost certainly become more widely offered, but it's still pretty new here in the U.S., and doctors are slow to get on the bandwagon, due to fear of litigation if long-term results are less favorable. Can't really blame them, but it means that the wheels grind excruciatingly slowly.

I wish I could give you a big list of cancer programs now offering this option, but Sloan Kettering is the only one I've been able to ferret out. They had already started using the technique before my own experience with breast cancer, and it seems they are still one of the few touting this as an option. You can always ask your oncologist -- he may have more information, and in any event, the more they see a demand, the more interest will be generated. And if you have the name of a provider offering this procedure, please add it to the comments section.

Basic Wiki info

General info link

A site that lists many links discussing this procedure

Sloan-Kettering info

More Sloan-Kettering info

Abstract referencing the original study in Milan

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