Does anyone here have a Uterine Papillary Serous Carcinoma diagnosis?
UPSC: Does anyone here have a Uterine... - Gynae Cancer Support
UPSC
9 Replies
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Partly. My diagnosis was uterine carcinosarcoma with serous carcinoma and chondrosarcoma components. Hormone receptor positive and HER2 negative.
This is a very rare, high grade cancer. It is very aggressive, The dominant part appears to be serous carcinoma, based upon my extensive research and testing.
I’m happy to share my research if you’re interested. Most of it applies to uterine serous carcinoma.
I am still NED six months after surgery. Surviving this cancer is a full time job, but it IS possible. I’m 63 and otherwise healthy. I intend to defy the dismal prognosis.
in reply to EAR1957
That’s interesting - as I was initially diagnosed as carsinosarcoma but after surgery was told it was UPSC - I don’t know about the hormone receptor issue. It’s a horrible one to have I’m learning. Would be v interested in reading some of your research.
I’m 60 and had my surgery 6 months ago and adjutant radiotherapy (brachytherapy) in May. Next check up in November.
Thanks x
EAR1957 in reply to
The Kaiser Permanente Tumor Board of Northern California discussed my case at their April and May 2020 meetings. The finally agreed it was Stage IIa, which was good news as they had also considered Stage IIIa.
Where are you? Perhaps we can communicate by email and telephone.
in reply to EAR1957
It was first thought stage 2 then post op it was stage 1A. sue.hirst@dsl.pipex.com
EAR1957 in reply to
I had surgery March 13 and brachytherapy in June 2020. I just had a CT scan on August 31, still no evidence of cancer. So we are very similar— and there may be 5 or 10 more similar to us somewhere. But it will be hard to find them!!! I’m glad we found each other.
in reply to EAR1957
Is it that rare? I’m in the UK. Yes - glad too that we found each other. I vary between head in the sand and hope for the best, and frantic googling. Neither particularly useful. Please do email me.
EAR1957 in reply to
I will email you but maybe not til tomorrow or Sunday... I am working today and its 10 am here. lol 😂
And yes, it’s THAT rare, at least the carcinosarcoma diagnosis is. I’m using Jane McLellands How to Starve Cancer book and doing a lot of my own research. The NC Tumor Board was impressed with my work.
I’m not a doctor — but my brother and my niece are doctors, so I can get access to medical research online.
I’m also a complete Anglophile, so I love making friends in the U.K. I watch the BBC all the time. I bred English dog breeds for years and attended U.K. dog shows.
And, oddly, I have never needed a map to get around in London — maybe I lived there in a past life?
