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woodsprite

(11,902 posts)
Wed Apr 14, 2021, 10:37 AM Apr 2021

Official diagnosis: Recurrent Endometrial Cancer (almost 15yrs to the day from initial diagnosis).

Just wanted to let you all know. Had the biopsy done last Thursday (4/8). Radiologist called my OB/GYN to discuss the results on Friday and the fact that they were both floored since it's been so many years. OB/GYN called his friend, the head of robotic/laprascopic GYN/Onco surgery at the Helen Graham Cancer Ctr to discuss my medical history, the biopsy results, and to pave the way and get the OK for me to call him at the HGCC and schedule an appointment. Neither GYN doc or my GP thinks that the nodule in my lung that also showed on the CT scan is related to cancer, but comes from a couple of bad cases of bronchitis and pneumonia I had over the past few years. Their initial impression from the scan and biopsy is that the mass could be excised locally and would follow up with hormone therapy (progesterone based med (megestrol) w/ possible tamoxifen every 4th wk).

I called Cadungog yesterday as soon as I left my OB/GYN's office, but his assistant said that he wasn't in the office yesterday afternoon and does not allow his staff to schedule appointments unless he is physically in the office. I did tell them that my OB/GYN had spoken with him about my case and he had agreed. SOoooo, I'm waiting for a call back today from their office to schedule an appointment.

I'm not surprised, just scared, especially after looking at so many studies 14 yrs ago (which I know is a LONG time in cancer research) and those more recent. I was originally treated with surgery only, no radiation or chemo. I'm trying to remind myself what my former GYN/Onco told me -- that no matter what I read, I am not a number, and those figures in those studies are rather small designed to fit a very specific profile, most also are only followed for the 3-5 yrs post initial diagnosis. Something I realized last night was that many studies from other countries that I was running across talk more about the patients - diagnosis, side effects, outcomes, etc. - more people/outcome oriented. A good number of the American studies I've read seem to be drug centered, what drug/combo they can try next, etc. I know I shouldn't be surprised since their funding probably came directly or indirectly from big pharma. Finding much of anything about recurrence AFTER 10-15 yrs is almost impossible. I'm trying to compile/write down questions so I know what I'm going to ask Cadungog when I see him.

What sucked the most about yesterday -- it was my birthday. Hell of a "present"

4 replies = new reply since forum marked as read
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Official diagnosis: Recurrent Endometrial Cancer (almost 15yrs to the day from initial diagnosis). (Original Post) woodsprite Apr 2021 OP
Wishing you great results from the therapy. redwitch Apr 2021 #1
That's certainly a kick in the teeth for a birthday, very sorry for you to receive it. Moostache Apr 2021 #2
How awful. Hope it all turns out okay. Keep us informed. ratchiweenie Apr 2021 #3
I also have endometrial cancer. Staph Apr 2021 #4

redwitch

(14,940 posts)
1. Wishing you great results from the therapy.
Wed Apr 14, 2021, 10:41 AM
Apr 2021

And there has been amazing progress in the last fifteen years!

Moostache

(9,895 posts)
2. That's certainly a kick in the teeth for a birthday, very sorry for you to receive it.
Wed Apr 14, 2021, 10:44 AM
Apr 2021

Sending out healing vibes and strength for you to tap into in the days, weeks and months to come. I live in constant suspicion that despite being "cancer-free" myself for nearing 14 years, the disease is waiting for its rematch with bad intent. Stay strong and focused on your needs.

Staph

(6,251 posts)
4. I also have endometrial cancer.
Wed Apr 14, 2021, 09:24 PM
Apr 2021

Original diagnosis in 2013 (surgery/chemo/radiation), returning with an inoperable tumor near my upper intestines in 2017 (more chemo), and then again in 2019. I'm now on the immunotherapy drug Keytruda, which is working quite well.

Keytruda was first used to treat lung cancer, but they've discovered that it works for other cancers, depending on certain genetic markers. As yet, there are no strong statistics on how long it will extend life for endometrial cancer patients, as, apparently, not enough patients have died yet!

There is a downside for some patients that you won't see on the corporate website. Because Keytruda boosts your immune system, it can cause your immune system to go a little haywire. I now have rheumatoid arthritis in my hands due to Keytruda. My rheumatologist says that my hands look like someone with five years of arthritis, rather than five months. But, all things considered, I can live with hand problems, because it means I can live. And one of the oncology residents is writing a paper on me!

All that said, I'm so sorry for your diagnosis! I know what a kick in the teeth that can be. But treatments for endometrial cancer have come a long way since your first diagnosis. They can do so much more, and there are new treatments on the horizon, based on the mRNA discoveries that led to the COVID-19 vaccines.

If you want to talk to someone going through the same situation, send me a DU mail.


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