Gynecologic cancers: What do you wish you had known?

@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)

@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!)

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)

I was diagnosed with endometrial cancer, had complete hystrectomy, and had 3 brachytherapy treatments (radiation) after 6 weeks. I wish I had read this book about radiation I would have had better questions to ask. Radiation-What it is and What you need to know by Robert Peter Gale MD a little dated 2013 but good basic knowledge about different kinds of radiation.

After a cancer diagnosis, there’s a rush to treat, with not much time to read a book in the midst of the fog. However, I wish there had been some informative patient materials to summarize the pluses and minuses of treatment options, especially radiation and its long term side effects. It would have been helpful to have booklets to take home and not just waivers to sign. I don’t regret having had the treatment, but I was unprepared for the many late effects that I’ve had to navigate on my own.

@ffr Pamphlets and small booklets are so important. You are so right. I wish more medical offices would have more of these informative patient materials. As I think back, some of the providers I saw at Mayo Clinic handed these materials to me during my appointments. Mayo Clinic also had shelves with informative materials right outside the offices. I collected quite a few of these and they were helpful.

My local providers (I live in a small community in Michigan) do not have these materials even in their own specialities.

I started a conversation with my oncologist about after effects information and will be following up via portal message. Pamphlets will be one of my suggestions.