Gynecologic cancers: What do you wish you had known?

Hi, Thanks for your post. My diagnosis is stage 11cm (p53abn) uterine serous carcinoma. Surgery was May 2025 and I underwent 2 rounds of chemo but stopped treatment due to high to toxicity. I am currently under surveillance after being NED for 4 months. Last scan was clear but I had a low positive Natera test in
April.

Looking back, I wish I would’ve known that there is no screening test for this cancer. Pap smear does not detect it. This cancer type is not caused by obesity, high blood pressure or other comorbidities. Bleeding after menopause (I’m 64) was my only symptom. I immediately called for a GYN appointment but was not seen until a month later. Biopsy and surgery followed and here I am.

I would like newly diagnosed women to be vigilant and direct in your discussions with your care team. Explain any and all side effects during treatment. Make sure you keep notes of blood pressure and medication issues. You have to advocate for yourself. Try to keep your mind in a positive place, eat well, stay hydrated, walk/exercise, get behavioral support, and live your life as best you can.

I received poor and delayed care from my regular GYN. If you have post menopausal bleeding, a PAP MAY pick up the cancer. The first thing my oncologist did was a PAP and it was positive for the already- diagnosed endometrial cancer. Just saying…..

I have endometrial cancer and i was blessed to have good doctors who moved me quickly to surgery because of major blood loss.

my first and only symptom was massive hemorrhage. every 2 days i would bleed large amounts of blood for 6-8 hours. it took 10 days to get in with my gyno. the moment she saw me she said you are severely anemic and sent me straight to the ER.

the ER admitted me right away and i began getting blood transfusions - i needed 3 pints of blood just to get me out of severe anemia and into anemia. then i was discharged home.

the test results came back as endometrial cancer. i had a CT scan a few days later and had surgery within 10 days from the scan.

the biggest thing i would want to know and what i would like other women to know is that the shock and fear will subside and a new normal will happen for you. you won't be spending all your time thinking about cancer.

I have a strong faith and very quickly gave it all up to God. I did everything the doctors requested of me to have the best outcome (radical hysterectomy and radiation) and once all that treatment was over i put it in Gods hands since the doctors and myself did all that we could.

i have a peace in my life that i never expected. i used to think it was best to die suddenly but now i'm so grateful for this wakeup call. it has allowed me time to focus on what matters and what provides daily joy. my life is blessed beyond measure.

@klue thanks for sharing…I love your post, so true….wishing you the best !

Hi. This is long but I wish I knew whether I should be less or more aggressive in trying for a diagnosis. Here’s my history: I’m 72 y/o and I had thyroid cancer and melanoma in situ but no significant gynecologic diagnoses to date. History: Incidental finding of endometrial thickness for more than five years of repeat transvaginal U/Ss of ovaries. In Dec 2025, transvaginal U/S. showed thickness of 10 mm which was maybe slightly thicker than before. I opted for a Biopsy in Dec. 2025 but no sample obtained due to extreme atrophy and tipped uterus. I had a pelvic MRI in Jan. 2026 which showed thickness at maximum of ,6mm. (whew. However, I was concerned about the possibility of missing possible diagnosis of endometrial cancer so had D & C in Jan. 2026. but again no endometrial sample due to atrophy. There was a good bit of bleeding still inside the vaginal cavity on my follow-up appointment the next month as there had been a lot of trauma. My gyn suggested estrogen cream because of the atrophy and extremely thin, delicate skin but I had an allergic reaction and only used it one time. Ironically, this led to a vulvar biopsy (for other reasons) in February. 2026 which was benign :). Consult with gyn/oncologist In March 2026 who said January MRI looked good and to redo in 6 months. (I’m now awaiting my follow-up pelvic MRI and appointment with my gyn/onc in June. She’s wonderful and I was lucky to get a consult with her to help decide next steps). My Colonoscopy in May 2026 was fine- all clear. So, I just had my annual apt with my regular gyn – not expecting much new- but he noticed small amount of oxidized blood in vaginal canal while doing pap test. He thought this was still from all the scarring and trauma from the various procedures but I’m now freaking out!! Until now I never had any spotting which was a huge relief. I’m awaiting the results of my pap test and I have a follow-up pelvic MRI in two weeks. Obviously, I’m hoping the thickness is stable at .6mm but I’m now so anxious about the blood found during the exam because “No spotting” was always the significant factor which left me less worried about the thickness. As they can’t get an endometrial sample, I don’t know if I have cancer or hyperplasia or just benign polyps, etc. causing the elevated thickness. I am left relying on MRIs and the expertise of my gyn/onc as to whether to just proceed with a hysterectomy or continue to wait and see. (I may also ask if she thinks a PET scan would help --I had one in 2023 for a melanoma scare which was all benign). I’m thinking that surgery may be the way to go and I just hope I didn’t wait too long!
Anyway, I’m curious if anyone ever experienced oxidized blood in the vagina lasting a good bit of time after previous trauma or if this really was my first incident of spotting.
Sorry to be so long-winded. Have a healthy, happy Memorial Day!

I would not have gone to an every other year PAP schedule just because Medicare didn’t pay for it. As soon as my gyn saw my cervix after the bleeding, she knew it was bad. I will always wonder if my cancer could have been caught earlier, before so much spread.

@sle3364 I thoroughly read your post. It looks like you are doing everything you can to follow up on your previous exams and what you know. With your medical history and your concerns have you talked with your regular gynecologist about whether or not to proceed with a hysterectomy? I understand and realize that physicians do not want to rush into surgery that isn't warranted. In your place I think this is something I would ask about and get more than one opinion. Here is what I tell myself when I'm reluctant to ask a question - "If I don't ask then the answer is no".

You write about a lot of worries and anxiety from your previous cancers and treatments. I think I can understand why you are so worried now.

Would you like to make a list of questions to ask your gynecologist and make another appointment?

@naturegirl5
Thanks so much for your thoughtful response. My regular gyn says he's sure it's not cancer but does say he can not know if the thickened endometrium is due to hyperplasia (pre-cancerous). He did not think the blood was meaningful but thought the next MRI would be very helpful. I think at this point I'm going to follow the advice of my gyn/onc when I see her after my follow-up MRI. Just so anxious until I get the MRI on June 5 and my follow-up appointment on June 12. I just don't know how to interrupt the finding of blood during the internal exam and time will tell whether I wish I'd proceeded sooner with surgery.

@sle3364 That sounds like a good plan. Yes, it will be a difficult wait until the MRI and the results but hoping that will be helpful in planning. Thank you for letting me know. And would you please return and let me know what you find out from the MRI?

Of course... I will keep you up to date. Thank you for your concern.