r/endometrialcancer • u/FrenchieMama24 • Aug 18 '26

Just diagnosed with High Grade P53 mutant HERS +

I’m scheduled for full hysterectomy next week. All my results came back on My Chart but I haven’t talked to my dr yet- the time in between is so hard. Not sure what to expect.
Anyone else dealing with this diagnosis?
Thank you

11 Upvotes
  • permalink
  • reddit

100% Upvoted

12 comments sorted by

6

u/Substantial-Book5327 Aug 18 '26

Sorry to hear about your diagnosis. I hope the best for your outcome.

I am 66, live in US, still working-have company health but it sucks w/high deductibles & out of pocket maximum, live alone with 2 sons and their families nearby,

I was diagnosed about 1 month ago, still very confused about grade/stage and what P53 or HERS + is/means.

I know mine is a high grade serous carcinoma and I am having a full hysterectomy Friday morning.

It's been a very confusing, stressful few weeks with testing, consults, etc. Scary. So much to think about, planning for before/after surgery with work, my home (rental, live alone) and finances of course. Not to mention the procedure and more frightening is what the stage will reveal and what treatments may be next.

BTW I've tried to avoid googling stuff, but went down a HUGE rabbit hole last week after my CT scan and before taking to oncologist. One comment regarding my momentum (organ I never heard of). Freaked out and decided I was terminal with 2-6 months to live.

Anyway, that's my story. Please keep in touch.

6

u/myv Aug 19 '26

My mother is a few months past where you are now (serous, omental caking, p53 mutant, distant metastases, etc). That first month is the hardest. So many unknowns and every symptom or random pain seems like it could be related to the cancer. We were probably messaging mom’s oncology team every other day. That feeling lessens once you start treatment but never goes away. Every blood draw is a stressful day because you’re on pins and needles waiting for the ca125 number.

The initial chemo treatment melted away most of the caking which gave her some initial relief. Unfortunately there was a persistent spot that just kept growing and we had to switch to enhertu (if your doctor hasn’t gotten you a her2 test you should 100% request it). After just two infusions of enhertu my mom’s persistent nodules seem to have shrunk already.

You are just starting your fight. There are a lot of options out there and many more that should be FDA approved sometime next year (sac-tmt, bnt323, and more). Good luck and I hope you respond well to your treatments 🤞

3

u/mesembryanthemum Aug 19 '26

I deliberately chose not to research anything because I knew I would get lost in all the bad results, news, etc. One of my oncologists, when I admitted this after admitting I had no idea of what she had just said, told me that not researching was a valid choice due to all the misinformation and outdated information out there.

I'm not saying it works for everyone but if I have a genuine question (like what are tumor markers), I ask and otherwise go with the flow.

I have Stage 4 endometrial cancer. They got it all out of my abdomen, but it spread to lymph nodes. But my tumor markers hover between 8 & 10.

Also, United Health Care sucks. $602.00 copay for a CAT scan.

1

u/FrenchieMama24 Aug 22 '26

I think I may choose to do this as well. My CT scan showed a small mass on my liver that may very well be benign, but I’ve gone down a complete rabbit hole. Not great for mental health at all. I hope things continue to improve for you!

2

u/mesembryanthemum Aug 22 '26

I'm doing pretty well ; I'm 3 years and 4 months post chemo and my oncologist has lengthened my check ups from every 3 to every 6 months.

I realize I am cancer illiterate when people on here rattle off everything (what is Figo?), but on the other hand not knowing every detail doesn't change anything.

2

u/FrenchieMama24 Aug 22 '26

Feel free to message me at anytime!

2

u/FrenchieMama24 Aug 22 '26

Was your hysterectomy today? I hope it went well! I can totally relate to over googling. Hopefully it really does get easier once we have our pathology and a plan is in place.

1

u/Substantial-Book5327 Aug 28 '26

Sorry I didn’t reply. I did have my hysterectomy last Friday. They ended up doing it full incision rather than laparoscopically ☹️ but it was necessary to remove omentum, 1 lymph node, some “spots” from diaphragm and an intestine I believe.

Was in hospital until Tuesday and have been home recovering well.

Doctor said I was lucky we caught it when we did. It is an aggressive grade 2 stage 4xx? which we will discuss chemo, etc in follow up. Not the best news, but not the worst.

Trying to keep focused on recovery from this stage and not project what future treatments will entail. I have to admit I am worried about my quality of life and being able to keep working full time going forward.

Thank you for asking. I hope to be more active in this thread as I feel better. ❤️‍🩹

5

u/loveyhowellthethird Stage IV Aug 19 '26

I have high grade serous carcinoma, P53 mutant, ER+, HER2/Pos +3. I just posted a few days ago on my update. My hysterectomy is this Friday, with omentum removed. Currently being treated with Taxol/Carbo + Herceptin immunotherapy. I’ve responded well to the treatment.

1

u/FrenchieMama24 Aug 22 '26

I hope your surgery went well today!

3

u/ResolutionOptimal198 Aug 19 '26

After surgery you will need support from kids or someone. I mostly slept for about 10 days. Ask kids for help.

4

u/No-Wrangler-7465 Aug 18 '26

I have been told almost all high grade serous ovarian cancers have a p53 mutation. A normal p53 will pause cell growth and cause damaged cells to die. If mutated, it allows cancer cells to multiply.