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afraidinsd avatar

Newly diagnosed and scared

Gynecologic Cancers | Last Active: Mar 27 11:04am | Replies (23)

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I also had high grade endometrial cancer, currently NED (no evidence of disease), with no significant markers. In my experience, oncologists will not discuss survival rates. I was a total mess, having picked up on the seriousness of my diagnosis from multiple physicians (I had 3 opinions) by what they said, what they didn’t say, their silent pauses, and their extended eye contact. I admit to googling survival rates and that set me off.
I finally contacted a few cancer support organizations: Cancer Support Community, SHARE, OCRA. I spoke with social workers who were great listeners. I could cry to them, but would never cry in front of my family. OCRA matched me with a cancer mentor who has been wonderful. I also asked my GP for a prescription to help with my anxiety and though I rarely used it, knowing it was there was a helpful. I would take one before a new experience (first chemo, first radiation) or still, when I feel the anxiety before a scan or reading a report on the portal.
Four years later, I am surprised to still be alive. I think this is why our doctors don’t throw numbers at us; it is a total crapshoot.
There have been new drugs available since my diagnosis and I hope that there will be a match for you. It’s great that your oncologist is consulting with the tumor board as this brings more knowledge into the planning.
I remember too well the panic of the stage you are now in. Sending hugs.
PS: I’m sorry that I cannot respond to the p53 question.
SHARE and OCRA have had webinars on EC genetic markers and treatments. Maybe you can check their websites and watch the recordings that seem relevant.

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Replies to "I also had high grade endometrial cancer, currently NED (no evidence of disease), with no significant..."

@ffr I'm unfamiliar with some of the organizations you mentioned. "OCRA matched me with a cancer mentor". Thank you for sharing this information. I'm going to look this up.