Three years after UPSC/clear cell diagnosis, and NED
I'm not on here much now, but I found hope here when I was diagnosed, so I wanted to post for those on now, and those to come. I was diagnosed in fall of 2018 (but had had symptoms for a year prior) with UPSC mixed with clear cell, with isolated tumor cells in one of the two sentinel nodes taken, so clearly with lymphatic infiltration.
Treatment consisted of a total hysterectomy, followed by 6 cycles of cisplatin, taxol, and trastuzumab (I had to fight to get the slides tested for HER-2 receptor status). I declined the last taxol infusion due to fear of peripheral neuropathy. I kept my hands and feet in ice water throughout the infusions, to try to prevent neuropathy, and it seems to have largely worked - I have very little numbness, and only a very rare stabbing pain, nothing that affects my life at all. The last three cycles were on an every 4 week schedule, rather than every 3 week, due to low platelets (which turned out to have been from a not yet diagnosed indolent B-cell lymphoma, which in retrospect was likely present at the time of diagnosis with the uterine cancer). I also had whole pelvic IMRT radiation out of fear of the tumor cells out in the nodes, although transvaginal radiation was what was recommended.
Three years later, no sign of recurrence. I'm pleasantly surprised, since I had had new onset clear vaginal discharge which had begun about a year prior, which I was told by OB/GYN was nothing. At the time of diagnosis I had no hope, due to the aggressive nature of UPSC/clear cell, and the delay in diagnosis. I hope that those to come to this board see this and realize that long term survival after UPSC treatment, even with lymphatic invasion, is a possibility.
Comments
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Thanks for checking in with
Thanks for checking in with us ZSAZSA1. Congrats on your 3 years dancing with Mr. Ned! May you continue to dance forever.
Love and Hugs,
Cindi
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We were dx close to the same time.
I am so happy so see you post again. I am coming up upon my three year end of treatment anniversary, but I can't celebrate until I have my next exam 11/9. My three year anniversary of my last NED checkup, complete iwth a CT scan is November 15. I feel pretty good, so I hope I continue to be NED.
I am so grateful for everyone that came before me who provided guidance, those that I interacted with during treatment and all of the lovely folks on our board. I love to hear the stories of NED, no matter how short the time, because we live in these 3 month and then 6 month periods of time where we have a pretty normal life. Contrasted with scan anxiety, or just plain anxiety because we had/have cancer! I still mourn and miss those who did not live during my time here and the ones who were gone long before me. Their words still resonate many years later.
Thanks to all who participate and I hope that our experiences can help the next group who come here for support.
Great to hear from you again, zsazsa!
Denise
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Thinking of you ZsaZsa
So happy to hear things are going well !
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So happy for you
I'm so happy for you, zsazsa! I miss your wisdom on the board and am happy your absence means you're out there living life.
I started down the path about a year before you. I'm now in year 4 of survival with Stage IVB and 3 years NED. All those are numbers I never expected to see, yet here I am, living a normal life and not thinking about cancer every minute anymore.
Tamlen
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Congrats yetti!
We love to hear these milestones!
xxoo
Denise
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I'm super late to the NED
I'm super late to the NED party celebration! However it is never too late to say congratulations zsazsa!
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