Monday, November 1, 2010

Scarier Than Ghosts and Goblins ...

I've learned a new fear. Just what we need -- something else to be afraid of. Still, I'm all for being informed, thus prepared. If you are of the type who would rather NOT have something else breast cancer related to be afraid of, stop reading now.

For those of you still here, this is a story about my friend's Mom. This is as I remember it being told so I hope what I'm writing is accurate. I might be a little sketchy on some of the details but the general story is a fact.

My friend's Mom had breast cancer several years ago -- about 20 years ago, I think -- and she had a lumpectomy and radiation. She was doing fine. Then, recently she noticed a dark spot on her breast. She asked her doctor about it but he was dismissive. The dark spot grew larger and darker and she again asked her doctor about it and again he didn't think anything needed to be done about it.

My friend was visiting her Mom, who told her about these recent events and then she showed her daughter her breast. My friend was SHOCKED! She said it was AWFUL! Almost her whole breast was BLACK! They went to another doctor and very soon the breast was biopsied. It turns out that it is a rather rare cancer called "angiosarcoma" and this particular angiosarcoma, they believe, was probably caused by the radiation she received for her earlier episode of breast cancer! Angiosarcoma is very aggressive and wide-spreading. It's frickin' nasty. My friend's Mom is about to have a bone scan because she's noticing some new pain in her spine and within days she'll be having a full mastectomy. The poor woman! I can't believe that she, too, went to her doctor with a very obvious reason to be concerned and he dismissed her. Twice! Bastard!!

I won't put any photos of angiosarcoma here. I did a google image search and I saw some that were very much what my friend described. I'll leave that for you to look up. Information about angiosarcoma can be found at Medscape and at Johns Hopkins. The awful photos I saw -- not for the squeamish -- are at, along with information about it. There is also this 2005 study, Risk of Angiosarcoma Following Breast Conservation: A Clinical Alert, which suggests that the risk of this type of cancer should probably be considered before giving radiation treatment to older women.

In light of my new knowledge of this cancer, I find it interesting that my radiation oncologist didn't mention the possibility. Even remotely. It was one of the first questions I had for him at my first appointment. The reason I was concerned is because doctors felt that my Dad's 2nd cancer -- about 12 years after his first -- was caused by the radiation he had for the 1st cancer. At the time I was shocked! I didn't know that was possible. So, when I was told I should have radiation, it was one of my first questions. Somehow, though, I came out of that appointment without an answer I could understand. The radiation oncologist kind of skirted it or muddied the waters for me with a lot of med-speak. Neither Kevin or I felt our question had been answered and I made a note to self to ask about it at our next appointment. Which I did. And again, he somehow got away without providing a real answer. How did he do that? In some ways it's my own fault for not being more persistent and insistent but, on the other hand, when a doctor is asked a specific question, he should give a clear answer. Temper it if he will, but it should still be an honest answer. How else can a patient make an informed decision?! Even having chosen to undergo radiation, I would still rather have known about the possibility of this cancer down the road so that one can at least watch for symptoms and pay attention to what might otherwise seem initially like a small bruise.

Some of these nasty angiosarcoma cancers are caused by chronic lymphedema ... lymphedema being a common result of breast cancer surgery and treatments. Fear of lymphedema (and believing I would be one of those vulnerable ones) is largely why I chose not to have the 2nd surgery that my oncologist would have had me undergo to increase my margins. I didn't even know about the possibility of lymphedema leading to angiosarcoma, even if rare. Only this past month I've been wondering if I made the right decision about forgoing the 2nd surgery. New study results are recommending an increased margin than the previous standard, of which I was already shy, for improved prognosis. Hmmm ... we'll just have to watch diligently even though one hardly knows what one is really watching for since those little buggers -- cancer cells -- can be having a big old party inside your body without you even knowing it until it's a party gone wild.

Speaking of new research on the breast cancer topic, I just read this past week that a new study finds that drinking green tea or taking green tea extract has no impact on cancer cells! This is very surprising considering all the information I've read and been told that green tea is an important part of my prevention arsenal. I'm patiently waiting to see some discussion about this new study. I know the doctors and researchers at Inspire Health, who recommend green tea consumption, will be analyzing this study and comparing it to previous studies to understand and explain the discrepancy. I'm very curious about it. Read about the study at the Doctor's Lounge.

This is me talking to myself about breast cancer, new knowledge, and new considerations. Maybe it will be worthwhile for others reading this to know about these things, too.

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