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abcdefghijjj3 karma

It was kind of in my leg, rather than on it. It essentially took over where my hamstring was. I was lucky, actually, there was a serious chance of them having to sever the sciatic nerve that runs down from the base of your spinal cord, through your leg, and to your feet. The tumor was effectively wrapped around this nerve. This would have left my leg essentially paralyzed. but luckily my surgeon was able to avoid severing the nerve.

The only complaint I have is the pain caused by scar tissue surrounding the sciatic nerve. It was a lot worse in the first 2-3 years, but seems to be getting gradually better. I was taking Celebrex up until recently for pain, but decided to stop as I believed I could handle the amount of pain associated with it now. I was told it could take up to 7-8 years for my leg to begin to feel "normal" again.

Currently there are no plans to remove the others (thankfully). The main reason for that I think is because my leg has already been radiated, and the others weren't discovered until about a year ago. My doctor is reluctant to do a second surgery as radiated skin doesn't always react well to surgery. I'm okay with the smaller tumors staying in as long as they continue to remain stagnant.

I'm fairly certain they were always there, I just attributed the soreness/swelling in my calf to fluid build-up caused by surgery (because they also removed lymph nodes, etc).

I'm currently taking tamoxifen, a hormone inhibitor usually used for breast cancer patients. Luckily, it seems to be working and none of the tumors have grown since I started taking it.

You seem like a sweetheart. I'm sorry, I don't have time to run through all the questions/answers regarding your surgery on Friday. What are you having done? You've mentioned in here somewhere that you've had 10 surgeries? Were all of these for tumor removal?

abcdefghijjj2 karma

I have fibromatosis as well!

Mine developed mainly in my hamstring (which has since been removed), and was the size of a football when it was removed. I also have 2 smaller tumors in my calf, and one reoccurrence in my hamstring after surgery.

I hope you're doing well, and that everything goes okay. I know it can be extremely scary. Stay strong, my dear!