Eight Months Pregnant and Arrested After False Facial Recognition Match

[Ms. Toad]

29. I have not gotten a clear answer,

but spend a lot of time in a sarcoma support group urging people to advocate for themselves.

It is a complicated issue. Sarcomas are rare (about 2% of all cancers). Within that 2%, there are between 50 and 100 sub-types, all aggressive, but each with a different risk profile. Sarcomas are good mimics of some benign (much more common) conditions - so the assumption is (especially if you are not at a sarcoma center) that it is the benign thing. Sarcoma often doens't even cross the mind of routine care providers.

The advice is also to never let anyone remove a sarcoma unless they are a sarcoma specialist (it has to be treated differently than other cancers). But there's no clear way to determine if it is a sarcoma without removing it - AND - many/most sarcoma specialists won't see you until you are diagnosed. So if you get someone else to remove it or biopsy it, you are pretty much guaranteed a second surgery - and may have dramatically increased your risk of metastasis by making it harder for the doctor to get the 1 cm margins they need.

The standard criteria for evaluating for a sarcoma is golf-ball sized and growing. But - by the time it is golf-ball sized and growing, it is often too late. Mine was pea-sized when I noticed it. By a month later when I was seen by a nurse practitioner it was kidney-bean sized. Two weeks later when they removed as much as they could get it had grown 50% more. And, when I had the second surgery two weeks after that, it had grown back to kidney-bean or larger size.

Mine was what was called an "oops" surgery (removed by someone who was not a sarcoma specialist). They believed it was benign. I was pretty sure it was cancerous (but wasn't specifically thinking about sarcoma). This regrowth was very different from the previous ones - and there was enough question that my dermatologist agreed to remove it.

I had a dermatofibroma (DF) removed in ~2014. My research indicated that even though DFs are normally benign, there are a handful of characteristics that suggest it might be mimicking a DF and should be treated as pre-cancerous. My DF had all but one of them. So I had several intermediate biopsies of suspicious regrowths, and had been watching it very carefully.

There has to be a better way of finding sarcomas than an alert patient who read enough medical articles to know of the risk, and who badgered her doctors enough to get a biopsy. The people I chat with in the sarcoma support group have tumors between golf-ball sized and watermelon sized - and some in the lower ranges (say up to baseball size) still have to battle their doctors for an evaluation.