What were your first signs of endometrial cancer?

My kidneys were being pinched off, and bladder full, I had no idea. I has 3 tumors in abdominal. Did you do just radiation? Or did you do chemo as well? I'm being told 5 weeks radiation too. How long. Ago you have it, did radiation along work? I also have the PolE mutation stage 3

@tdfraze Hello again. I just welcomed you to Mayo Clinic Connect in a different discussion (What Kind of Radiation Therapy Did you Have?).

Memorial Sloan Cancer Center: POLE Mutation Gene:

-- https://www.mskcc.org/cancer-care/patient-education/about-mutations-pole-gene

What did your doctor say about how the POLE Mutation affected you? Were you diagnosed with endometrial cancer? Ovarian cancer?

Endo cancer stage 3. They didn't say exactly, except that those individuals with it seem to have better outcomes. I've tried to gain insight about it, why I was seeking more info on it to know how to approach it best, cause I haven't started treatment yet, they want to start this next week. Really need guidance

@tdfraze You will notice that I responded on the Discussion on Radiation Therapy.

Here is the website I recommended that will help explain endometrial cancer, stages and grades.

American Cancer Society: Endometrial Cancer Stages

-- https://www.cancer.org/cancer/types/endometrial-cancer/detection-diagnosis-staging/staging.html

Will you let me know if you find this website at all helpful? Any other questions you might have?

Hello tdfraze, 5 weeks of radiation post surgery and no chemo. This was 2017 and so far no recurrence, however a rough going getting my GI tract back on schedule.

I had ovarian cancer in 2008 and had a total hysterectomy/oophorectomy at that time. The yearly screening consists of the CA 125 and a CT scan. I have my doubts about the CT scan as they always seem to see something but say it's scar tissue from previous surgeries, however, that's what they said was seen on the CT before my endometrioid was found. Subsequent scans supposedly show the same thing and after a few years of that, I have my doubts when thinking back to the scan before the surgery in 2017.

Been telling the provider that since about 5 years ago, however, the same tests are being repeated. As mentioned in another reply, prior to the surgery in 2017, the CT evaluation was that the area in question was only scar tissue from the surgery in 2008, but because the CA125 was elevated they sent me for the ultrasound, the MRI, the vag. ultrasound and then decided to do surgery because of the blocked ureter. Otherwise, they likely wouldn't have found the cancer in 2017 had there been no concern for the kidney flow. What good was the CT then?

Hi, mine started with lower back pain and frequent urination. It was during covid and I moved in with my elderly parents and was lucky enough to work from home. I lost them within 9 months of each other and approx 12 months later I was having alot of pink watery discharge but work colleagues said it’s menopause. I unfortunately listened and then a few weeks later I woke to a hard grape sized lump on clavicle. My Dr of 30 years was angry with me as any kind of blood during or after menopause is very serious. I had biopsy of neck, curet then full hysterectomy but cancer markers were 1067 and neck lump was lymph node cancer stage IV. This was August 2023. , I had 6 months chemo, a month of NSD then came back as pelvic lymph node tumours. 7 months of 2 trial pills didn’t work and now 6 weeka into another trial keytruda and Sk264. I was given 12 to 24 months even with treatment which takes me to end of July 2025 but I am very stubborn and remain positive. I live in Australia and feel very grateful and blessed to be having treatment.

@marina22 Welcome to our Gynecological Cancers Support Group. Thank you for sharing your experiences. Whenever we share our experiences with one another it can be helpful for someone else who could be questioning symptoms.

I'm certain it was a blessing to your parents that you could move in with them and care for them. How fortunate that you could work from. home during COVID. I'm very sorry for the loss of your parents. I have learned that many times when we are caring for someone else we do not always notice symptoms in ourselves. That happened with my. mother-in-law who cared for her husband during at least 10 years of Alzheimer's disease. We found out later that there were symptoms she ignored or did not follow up on until after he died. She had ocular melanoma that fortunately was treatable and she did very well for another 5 years until she died at almost age 90.

I will say it's a good thing you did not listen to your colleagues. Many women here have shared that their first symptoms was spotting or postmenopausal bleeding. That was my first symptom too and I have since learned that bleeding after menopause is not normal. It's a flag to get in to see your gynecologist as soon as possible.

That hard lump on your clavicle was surely a "wake-up" call as they say. Was the lump painful? It so good that you saw your GP and got treated. You've been through a lot of treatment since that first diagnosis and yet--with Hope (optimism with a plan) and being stubborn as you state it here you are. Yes, you are blessed.

Are you still working? How are you feeling on most days?

Hi Helen,
Thanks for replying. No longer working as I used to get up at 4.20am to start work for 6am and I found after chemotherapy I have brain fog which impedes my memory so driving more than 10kms is too risky. Unfortunately it had a very demanding job and I was no longer capable so I retired 🙁
The neck lump was a little sore but for a few months prior I had shoulder pain and numbness in hand. I thought I had hurt it lifting a heavy weight but the oncologist said the lump was pushing on the nerves. Sorry to go on but I spent a few days in hospital recently as I had a huge lump in my neck which turned out to be salivary stones not a tumour thank goodness. Looks like a side effect of the keytruda as well as mouth/tongue ulcers and splits. I have follow up oncologist appt. as treatment has affected my liver function. Fingers crossed my scan and bloods are ok. Hoping you are feeling well and positive.
Cheers
Marina