Serous Endometrial Carcinoma ("high-grade"), now metastasized to lungs

MDaleMaryland

Hello - Introducing myself here. The topic title summarizes it. I was diagnosed in December 2022 and January 2023, had to wait 6 weeks for a 'radical' hysterectomy while in pain and bleeding profusely (because of health insurance!), then spent 2023 in chemotherapy and radiation, and recovering from their side effects.

Last year was pretty good! Not perfect, but the four sisters arranged a reunion, a miraculous baby granddaughter was born, I was able to work a little bit, and my hair grew back into a sort of Ava Gardner-ish thing. (I've had Herceptin infusions every 3 weeks, and CT scans every 3 months.)

The CT-Scans started to show growing lung "nodules" that were so small, they were considered nothing; then something to watch; now full-fledged metastasis. The oncologist will NOT give me a time frame (frustrating), but from research I think this gives me a short life span — possible 8 - 12 months.

The recommendation is another 6 rounds of chemo — losing my hair and eyelashes all over again — but evidently there is no surgery or radiation to help me now. I've requested a 2nd opinion for this week, partly to ask whether more chemo is worth the time it will provide me vs. the condition I'll be in with vs. without it.

Meanwhile, I know life itself is "terminal," but I am struggling with the fact that this is most likely terminal within a year or so. I would like to connect with people, and/or a therapist, who understands the thoughts and feelings around this.

Thank you for letting me share this! 😊

NoTimeForCancer

hello MDaleMaryland. I am sorry to hear what you have had going on. I think you already know, it stinks. I have a question and a few thoughts, so bear with me.

First, did they do a genetic assay of your cancer? If it has markers like dMMR, POLE, P53, etc (and the gyn onc should know what these are) some of these respond to immunotherapy so please ask about that. I am glad to hear you asked for a second opinion. It is your life and you have every right to get answers and find if there are other options.

Next, I don't think anyone really 'knows' how much time we have after a diagnosis, and we have women on here who have had recurrences, some more than one, and still with us.

I like to hear you are looking to find someone to talk to. It is all very overwhelming and ultimately your choice. If you are willing, please feel free to come back and share what you decided and if you found anyone to talk to. You can help all of us, and I think you in advance for that gift.

MDaleMaryland

https://csn.cancer.org/discussion/comment/1720584#Comment_1720584

Hi NoTimeForCancer! Thanks for replying. Good question about the genetic testing. The tumors in my lungs were small a few weeks ago and they weren't sure they could get enough tissue from a biopsy to test. That's one reason I am in a 6-week holding pattern right now. (Three weeks left.) I thought I saw P53 in the initial analysis of the endometrial cancer but evidently they need to look at what's in my lungs now. Tomorrow is my second opinion appointment. Thanks again for writing. 😊

Mercorby

Sorry to hear about your recurrence. I know what that is like.

A second opinion is a good idea. Getting NGS (next generation sequencing) after each recurrence is a good idea. There are many new treatments. Lots of ADCs (antibody drug conjugates) in clinical trials. Please don't give up hope. It would be helpful to know if you are HER2 positive or negative.

https://www.sharecancersupport.org/video-library/the-latest-treatments-for-uterine-cancer-and-whats-in-the-pipeline/

Best wishes to you.

MDaleMaryland

Hi, Mercorby - Thanks for your message. I'll read the info at the link, but there's apparently a lot I don't know! (NGS and ADS to start with!) I do know my cancer is HER2 positive, so I've been getting Herceptin infusions every three weeks.

First six rounds of chemo ended July, 2023; then 25 rounds of radiation (5 days per week) ended in early October of 2023.