What were your first signs of endometrial cancer?

Posted by Helen, Volunteer Mentor @naturegirl5, Jun 21, 2022

What symptoms did you have that led you to your physician before you received a diagnosis of endometrial cancer?

I had entered menopause more than a decade ago so menstruation was done. I discovered vaginal blood one morning. When it happened again a few days later I realized that something was going on but I didn't suspect cancer. I just knew this wasn't normal. I made an appointment with a gynecologist. Within a few weeks I began having cramps like I used to have when I first started my period as an adolescent. By then I was already under the care of the gynecologist who did a D&C and that's when the endometrial cancer was diagnosed.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Profile picture for tdfraze @tdfraze

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

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@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?

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@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?

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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

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@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?

REPLY
Profile picture for Jane Mc @jane

9 years post ovarian cancer and total hysterectomy/oophorectomy, and not having had a UTI since childhood, a slowly increasing pressure sensation on one side of my bladder was getting intense to the point it felt like a burning sensation on the OUTSIDE of the bladder when voiding. No bleeding. A little fullness in the lower part of the belly. Was starting to feel that starving, then sudden fullness after only a few bites, too. Had just finished signing papers to end a 33-year marriage and thought I may be getting an ulcer due to the circumstances. Went to see the GP who had been following me for almost 30 years, and he said it just didn't sound "normal" for me. Did the CA-125, the CT, the MRI, the ultrasound, the vag. ultrasound and when the results came back, they said a kidney was being pinched off by something which led to the surgery where they found cancer to be obstructing the ureter and stuck to the bladder and lining the lower right quadrant of my intestinal cavity. Needless to say, as with the ovarian cancer surgery 9 years previously, the laparoscopic surgery they had promised ended up in a full xyphoid to pubis incision (again!), along with waking up for the 2nd time in my life being told what they initially thought was benign was actually cancer. Great surgeon! 5 weeks of radiation and it's a blessing to be here!

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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

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Profile picture for marileenewman @marileenewman

My Dr orders CA125's every 3 months and an MRI yearly as standard and additional if any symptoms warrant.
I am 3 years out since diagnosis (Feb 4th 2022).
What is everyone else's experience with surveillance? What do your doctors order to ensure a recurrence is caught in a timely manner?

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I had serous papillary carcinoma- had two different opinions- Moffett which was exceptional- they actually gave a borderline stage 2-since it was entering the cervix- down in South Fl they said stage 1A. I am now clear 8 years- my oncologist said he does not need to see me anymore - just my regular gyno for checkups. Had chemo and brachytherapy. However, I always check to se if there is staining- that is how I became aware of it. I was 69 when diagnosed. A real shock.

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Additional, anyone can order their own lab tests from LabCorp. The cost of a CA125 test at LabCorp is generally around $69, plus a $4 service fee. This test is a blood test used to detect ovarian cancer and other types of cancer.

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Profile picture for Jane Mc @jane

2017, so its been 8 years now. The insurance I have through my employer is no longer covering the ongoing yearly testing the oncologist has recommended, so going forward it will be a tough decision to be re-tested yearly. It is unfortunate we have to make decisions like this, particularly when one works for a top medical facility in the world, one would think it should/could be covered as preventative care.

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If the insurance is no longer covering it, tell your Dr about your symptom of fullness in abdomen. Post OvCa patients with fullness in abdomen should always have labs (including CA125) and abdominal imaging. Take care of yourself, do not depend on insurance companies to look out for you.
Only yearly testing is minimal at best.

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My Dr orders CA125's every 3 months and an MRI yearly as standard and additional if any symptoms warrant.
I am 3 years out since diagnosis (Feb 4th 2022).
What is everyone else's experience with surveillance? What do your doctors order to ensure a recurrence is caught in a timely manner?

REPLY
Profile picture for Jane Mc @jane

2017, so its been 8 years now. The insurance I have through my employer is no longer covering the ongoing yearly testing the oncologist has recommended, so going forward it will be a tough decision to be re-tested yearly. It is unfortunate we have to make decisions like this, particularly when one works for a top medical facility in the world, one would think it should/could be covered as preventative care.

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Did you have a hysterectomy? What is the ongoing yearly testing the oncologist recommended?

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@jane Thank you for sharing your experience. It's so good that you have a GP who has been your doctor so many years and took you seriously. I agree. You have a wonderful GP, surgeon, and radiation oncology team. When did this more recent cancer that was obstructing your ureter occur?

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2017, so its been 8 years now. The insurance I have through my employer is no longer covering the ongoing yearly testing the oncologist has recommended, so going forward it will be a tough decision to be re-tested yearly. It is unfortunate we have to make decisions like this, particularly when one works for a top medical facility in the world, one would think it should/could be covered as preventative care.

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