A recipe for living with cancer.

I am participating in a program which carefully monitors breast cancer patients for lymphedema. The idea is to identify any symptoms even the smallest early on and treat it before it becomes even obvious to the naked eye and prevent it from becoming uncontrollably awful. There is a numerical scale and if you move 10 points or more you need to address things immediately. What this means is going from not wearing a compression sleeve to wearing a compression sleeve.

In my continuous search for information on cancer, mastectomies, chemo therapy I have now added lymphedema to the list. The internet has been amazing with the quick availability of information but especially lectures from doctors, specilists in field like reconstructive surgery, cancer therapy, lymphedema research, are among the tens of thosands of lectures out there now avaialble to us. For those of us that can remember, think about the hours researching in a library through the Dewey decimal system, books, papers and microfish, remember those crazy machines…I digress.

I found a lecture from Stanford Universitthaty which was tremendously helpful in my understanding and decision making for surgery. And found an equally good series on lymphedema also from Stanford which was helpful in understanding it and towards the end disturbing for the changes lymphedema can cause. I don’t have lymphedema, but want to be prepared just in case.

I had a baseline test done in November and today I had my second test, I went up six points. In discussion with the nurse there are so many variables; was the first value correct and is todays number correct? You cannot have any metal on or in your body as this will change the value and the skin expanders have a bit of metal. I will have another test before radiation therapy starts and will have regular measurements thereafter. Only 20% of breast cancer patients get lymphedema, so once again I am faced with chance and percentages.

When my lumps were first seen, the radiologist was a 98% sure it was cancer. When my chemo therapy was over, the tumors had shrunk 50% and 33%. The oncologist said I have a 90% chance of being cured. Since my tumors didn’t disappear with chemo I need radiation, the radiologist said women in my category who don’t get radiation have a 20% chance of recurrence, with radiation, it goes to down under 5%. Lymphedema, there is a 20% chance I will have it and 80% chance I will not. And the thing about lymphedema as of the 2010 lecture, they don’t know what the risk factors are in getting it.

I am 100% sure of one thing a percentage here a percentage there…this is nuts!

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