Sarah:

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I would like to know more about radiation treatments. I noticed not every state even has a place that will do it. It is an accepted procedure by insurance companies (or like some things you have to fight an insurance company to cover)? Is it a one time treatment or does it require several treatments. I would like to know as much as I can.

Lori-T:

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I met with Dr. Kline, who typically works in Boise ID, however, he did meet with patients in a Portland OR office several times a year. I say that because it's been 3 years since my treatment- (summer 2012). At the time, I knew my Dups was active because the nodule was large and sore and a cord was starting to form rapidly. Dr. Kline gave me a steroid injection and referred me to Dr. Goubin Song, a radiologist who works at Virginia Mason Hospital in Seattle WA. My treatment was 5 days, then I believe it was about an 8 week break, and then another 5 days. It is important to have the procedure coded correctly, so that your insurance will cover it. I did get it approved prior to my treatment. My insurance company didn't give me any hassle.
Best of luck to you.
Lori

Laurie:

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I'm very curious about the age of onset for women on this forum. Everything I've read says that men are affected way more often than women. I'm 55 and noticed my first nodule several years ago. The condition stayed the same for years until this year when it became very active. I don't know if it's coincidental that just as I hit menopause, it became active. I'm wondering if this could account for the disproportionate numbers of men that get it. Maybe there's a protective factor that estrogen levels provide younger women. What do you all think?

Hello Dot and others,

Though I cannot speak to your individual experiences and how the patterns have related to your taking or not taking estrogen, I can say that the continued use of estrogen since my hysterectomy 22 years ago has not seemed to prevent or help my DD and LD.

That is not to say, however, perhaps I may have gotten the disease sooner, than later in life. In general women who are estrogen deficient are often slim. Since body fat and estrogen relate to one another. After menopause, most of the estrogen in your blood comes from a chemical process in your fat and muscle cells. The more fat you have, in general, the higher the estrogen levels in your blood stream.

Women that take the minimal amount of replacement estrogen after a complete hysterectomy (where both ovaries are taken) still receive less estrogen than those that go through menopause naturally, something to keep in mind.

I initially spent months after my surgery studying the pros and cons of estrogen replacement for women who have had a complete hysterectomy. My greatest concern was bone loss and preventing osteoporosis because I am very small boned.

I have noticed a correlation of those with DD, not sure about LD, that have thinner, non-fatty or thick hands, and small boned. They seem to experience more problems with DD. And, I have been told the disease likes fat. Though not everyone who is thin, body wise, has thin hands or vice a versa. Much of that depends on body frame.

I think your post has raised the possibility of a correlation for women that might better relate to estrogen, fat, and this disease.

Thank you for your post it gets us all to think!

Nan

Edited 01/31/16 20:48

Hello Kenedy,

Not sure what your question is or to whose post you are referring to? Since your comment followed my post thought I should respond.

Please state your question.

Thanks, Nan