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Gynecologic cancers: What do you wish you had known?

Posted by Colleen Young, Connect Director @colleenyoung, May 22 12:18pm

@naturegirl5, mentor of the Gynecologic Cancers support group was featured in this month's Mayo Clinic Health Letter forcused on gynecological cancers, risk factors and new, life extending treatments. See the link attached below

As Helen shares in the article, post menopausal bleeding was the symptom that led to her diagnosis. Thank goodness she and her doctor took action and she got a biopsy right away.

What symptoms led to your diagnosis? What do you wish you had known and would like to share with someone new to this unwanted journey?

Shared files

Mayo Clinic Health Letter-Special Report on Gynecological Cancers-May 2026 (Mayo-Clinic-Health-Letter-Special-Report-on-Gynecological-Cancers-May-2026.pdf)

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

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robings | @robings | 2 days ago
In reply to @naturegirl5 "@robings I've gained weight since I had my total hysterectomy for endometrial cancer in 2019. In..." + (show)
Profile picture for Helen, Volunteer Mentor @naturegirl5

@robings I've gained weight since I had my total hysterectomy for endometrial cancer in 2019. In addition to the increase in your waist size did you gain overall weight?

In my local community I have an excellent primary care physician who answers questions and spends all the time we need together. However, if I'm referred within the community I have a similar experience to what you described. I find that I have to do the work to make sure everything is in place for whatever the treatment will be.

This is not all the case at Mayo Clinic where care is coordinated between and among medical providers and departments. It's an 8 hour drive for us to go to Mayo Clinic and it's worth it. When I've had these excellent experiences at Mayo Clinic I often arrive home wondering why so many medical practices operate in their own silos and do not adopt the Mayo Clinic model.

What is APC treatment? Was that related to the endometrial cancer?

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@naturegirl5 thank you … argon plasma coagulation to help stop rectal bleeding due to radiation proctitis … I feel sorry for the young generation of females that will be doing an at home Pap smear! MY GOD THERE IS SO MUCH MORE A SKILLED PHYSICIAN NEEDS TO CHECK - skin (lichens sclerosis), anus, heavy menstrual bleeding discussion (precursor to endometrial cancer)

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ffr | @ffr | 1 day ago
In reply to @robings "@ima1survivor thank you … they said it was fat come on they do ct scans and..." + (show)
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@ima1survivor thank you … they said it was fat come on they do ct scans and know why - I’d think I was the first woman who ever had a total hysterectomy for cancer -?they see informing patient I think as a liability issue. In any case women REQUIRE an outpatient clinic for medical support after breast and gynecological cancers (recurrence, skin, radiation proctitist effects)

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@robings I TOTALLY AGREE with your last sentence and I have said it for a while now. Next week I will say it to my oncologist when I go for my six month exam. (It won’t change anything, but still, I need to say it!)

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kmfdallas | @kmfdallas | 12 hours ago

This is an excellent publication on reproductive cancers. However, there is a major omission - Exposure to Diethysltytilbestrol (DES) either in-utero or as an adult. Physicians need to know about this risk for an earlier diagnosis.
■ “Concurrent primaries of vaginal clear cell adenocarcinoma and endometrial adenocarcinoma in a 39-year-old woman with in utero diethylstilbestrol exposure”. The first case, to our knowledge, of a woman exposed to DES in utero who presented with double primaries of clear cell cancer of the vagina concomitant with endometrial cancer. (Int J Gynecol Cancer. 2001 May-Jun;11(3):247-50)
■ “Neonatal diethylstilbestrol exposure disrupts uterine epithelial apical basal polarity and partial EMT state” Found that developmental exposure to DES promotes premature expression of ERa in uterine epithelium, reduces uterine Wnt signaling, and eliminates the Lgr5+ epithelial stem cell population. Intercellular communication is dramatically reorganized, and the developing uterine epithelium loses its normal partial EMT character. In addition to its important roles in development, LGR5 is a marker of adult epithelial stem cells in numerous tissues and in cancer stem cells (Authors: Rachel E. Bainbridge1, Wendy N. Jefferson1, Tianyuan Wang,, Sara A. Grimm, and Carmen J. Williams - Reproductive & Developmental Biology Laboratory and Biostatistics and Computational Biology Branch, National Institute of Environmental Health Sciences, NIH, Durham, NC 27709) https://doi.org/10.648. Feb 2, 2026) https://www.biorxiv.org/content/10.64898/2026.01.29.702663v1.full.pdf
■ “Cancer risk after in utero exposure to diethylstilbestrol” In utero exposure to diethylstilbestrol (DES) is associated with increased risk of clear cell adenocarcinoma (CCAC) of the vagina or cervix. It is not clear whether these risks remain increased at older ages, and if the risks of other cancer sites, including breast cancer, are increased. Researchers concluded: “Screening for vaginal cancer should be extended beyond age 60.” (Authors: Naomi B Boekel 1, Janneke Verloop 2, Hester H van Boven 3, Elisabeth J M van Erp 4, Lieske Schrijver 1, Matti A Rookus # 1, Flora E van Leeuwen # Eur J Epidemiol 2025 Jun;40(6):659-668. doi: 10.1007/s10654-025-01234-9. Epub 2025 May 28)
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