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Friday, July 16, 2010

Pain, Stress and Hope

I've been doing a lot of reading about my diagnosis. What I have been finding is not very encouraging though. A benign Phyllodes Tumor (aka philloides tumor), when it recurs, is usually malignant. There is a study going on in New Hampshire that is showing radiation to have some positive effect on these tumors, so there are treatment options. However the best treatment still appears to be complete surgical removal, preferably with a clear margin of healthy tissue. Everything I have read agrees that even a benign phyllodes counts as a positive cancer diagnosis. So now I am doing daily breast self exams because I want to catch any new growth as quickly as possible.

I have an appointment to see an oncologist on August 4th, one who was trained at the M.D. Anderson hospital in Houston TX. Since I had already been recommended for a prophylactic mastectomy but couldn't find a surgeon willing to do it. I want to see what the oncologist has to say. My hope is that he will agree a mastectomy is necessary now that I have a cancer diagnosis and he will know a surgeon willing to do the surgery. Removal of the breasts is my best chance at not growing another tumor, this one malignant.

My primary care doctor is putting in prior approval paperwork for the genetic test (BRCA I and II genes), but test results still takes 6 to 8 weeks or longer. I am hoping that if the oncologist agrees we can get the mastectomy done before that. Though I seriously doubt it will happen.

Dr. Idiot, the surgeon who did the lumpectomy, told me that if I had cancer he would do a mastectomy. Despite phyllodes tumors counting as a cancer diagnosis, he still won't do the surgery. He still wants the damn genetic test. This just ticks me off. With my family history and now this tumor, it should be enough for him to believe that a mastectomy is the right choice.

My back still isn't back to normal since the surgery last week. My lower back still has much higher pain than it usually does and the SI joint is also very unhappy. I will probably spend today in bed again trying to get both back to my normal by resting them completely. There really isn't anything else I can do.

Ron has been truly wonderful through all of this. He has stood by me every step of the way. He also spent the afternoon and evening reading about these tumors after we got the diagnosis. Like me, he wanted to know everything he could about them and what treatments, if any, would be best for it. He is behind me on wanting the mastectomy. I have been so grateful for his love and support through all this. It is wonderful to have a partner who believes in and will love up to the vows he took when we got married.

Ron, thank you for everything! I love you!

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