brucergoldberg:

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i know about the re-occurance - had that in my foot. you seem to know quite a bit. DO you think RT really works?

brucergoldberg:

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ok so I'm on the right track?

Hi Bruce

Welcome to the forum, from me. My standard advice is start keeping a record with photos. Record should be of symptoms, and the photos will back up any perceived changes. That way you have objective evidence on changes and the rate of change.

Your knuckles don't seem so bad from the photo but of course it's all relative. Mine are quite evident and sometime swell up quite large but rarely hurt, and have always subsided back, but still evident. I have had RT on both hands after reading ProfS papers that show something like 85% success rate when caught at the right time. Success is not a cure but a slowing down of progression to contracture, and we have people on the forum reporting both success and failure. I think with your tiredness and thyroid problems you should consult your general physician before considering RT. Until there is a contracture the other established treatment options are pointless.

Impressive foot scarring, ouch. I have a pinkie finger amputation which is so well done, sculptured, colleagues I work with are often surprised when they are eventually told I have it missing since they had not noticed. There are some success stories with RT and Ledderhose, but cryosurgery too seems a less damaging way of managing it than surgery if fibromas become too painful to stand or walk with.

Best wishes

SB

Edit to add the RT has not improved my knuckle pads, and in fact one is playing up now, although to be fair the depth of radiation penetration is controlled to be effective on the palm side. But, having said that a side effect was to 'cure' some minor skin keratosis on one thumb.

Edited 06/21/14 21:09

does anyone have luck with just a regular oncologists office?

brucergoldberg:

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you may know this , has anyone been successful with just a normal oncologists office?