Newly Diagnosed Stage 3C1 endometrial cancer grade 1... what to expect?

Idaho1960

Hi There,

Well just a short 3 1/2 yrs ago I was my husband's caregiver for his colon cancer which he did pass away early 1021.

Now I find myself in the same situation dealing with cancer but now I am living alone. One would think cancer would jump over me since I already had to deal with it so long prior .

Started spotting during a planned 4 week road trip (Mid Sept).. figured I would take care of when I returned thought maybe it could be a UTI. Right away within a few days of returning end October I got in to see my primary they did a vaginal ultrasound. found no masses but did notice lining a bit thick 1/1 cm referred me to oncologist.. met him Early November he did a biopsy and it came back November 20th as Grade 1 endometrial cancer. He said good news is its slow growing..

Referred me to gyno oncologist Mid December had that appointment and she scheduled me for hysterectomy Jan 8, 2025. She (surgeon) stated oh I don't think you have to worry you reacted quickly and it is a grade 1 cancer so growing I have many that wait for 6 months to a year before they come in and they are still at early stage. She ordered CT scan which showed no spread.

Had surgery 1/8/25 well walla ——— drum roll ——- pathology came back Stage 3C1 grade 1. Which totally floored me as so much for slow growing. Ya, right.. 16 weeks from first spotting to surgery and it's already a stage 3. 4 Sentinel lymph nodes taken at surgery and all came back positive for cancer cells plus she said slight spread to my cervix.

So guess chemo and radiation is in my future. My question is… to get my best care should I go to where my surgeon is the hospital she works out of has their own Cancer institute or she said maybe I would like to go somewhere closer to my home for treatments. She said we are still very much your care team even if you go somewhere else.

So my thought is.. even though it maybe 50 miles farther for me to go to the Cancer Institute where my surgeon and care team is…. maybe that is better then going somewhere out of network that do not really know me or my case per say just to say a bit on millage and time?

I'm tossed.. I would think at the cancer institute where my surgeon and care team already is would be the best place to go plus I could get all my scans their etc when needed.

Am I not thinking this out… Whats everyones thoughts?

Any postiive Stage 3 stories for me? I just dug myself into the rabbit hole and I feel I can't get out.

Thanks everyone.

Cmcicci

https://csn.cancer.org/discussion/328930/newly-diagnosed-stage-3c1-endometrial-cancer-grade-1-what-to-expect

Cmcicci

Hi!

I wanted to respond because your post was new. I have just finished 6 cycles of chemo and immunotherapy and will begin immunotherapy alone this week. Surgery was 8/24. Stage 4a. My surgeon and center are only 10 minutes from my house, so I have been lucky. It’s harder to decide on where you will be treated if you have more options. It is nice to be close if the quality of the treatment is equal. If your surgeon can recommend a center closer to you, I would visit and consider. Will the surgeon continue to follow and prescribe your medications? Good luck to you in your decision!

Idaho1960

Hi There thanks for responding.

I think I found the one I want to go to… its one of the ones my husband went to during his initial treatments. Now getting the insurance to cover where I want to go.. that may be a bit harder.

So many decisions to make in such a short amount of time as they want you to start with treatments a few weeks after surgery.

Surgeon never specified if she would be the one prescribing meds etc. It really don't seem like it though I mean she has tons of surgeries and patients to attend to since they are the only gyno oncology facility for about a 500 mile radius.

Good luck in your recovery. How was the chemo.. I know no walk in the park but was it tolerable for you? They pretty much give everyone the same initial chemo cocktail I think. They say chemo followed by radiation for me.

Any radiation in your treatment plan?

Cmcicci

https://csn.cancer.org/discussion/comment/1720528#Comment_1720528

I found it tolerable. I had paclitaxel/carboplatin and a new immunotherapy (Jemperli). It helped to cool my hands and feet during Paclitaxel to help prevent neuropathy. Some cool the scalp to prevent hair loss, though it may only prevent some hair loss. I did not do that, so I lost my hair. It should grow back. I didn’t have major nausea-ate small meals more frequently and stayed hydrated. Exercise and naps help with fatigue and staying close to your friends. Constipation was a problem with carboplatin for me. I used stool softener, Senakot S, fiber and water to help. Swimming, walking, yoga and strength/balance training have been the most helpful. I have a port for chemo and tops that open for port access.

Cmcicci

No radiation planned at this time.

Idaho1960

Thank you.. for the info. I wish you well on this journey.