My Uterine (Endometrial) Cancer Story: Two-and-a-Half-Year Checkup–Pap or No Pap?

Still Life: Basket of Peaches by Raphaelle, Peale, 1816

Display Peach for Uterine Cancer

Yesterday, June 14, 2016, I saw my regular gynecologist at the 30-month mark post-hysterectomy for uterine (endometrial) cancer. I thought the “no-Pap policy” discussion had been lain to rest . . . but not quite.

You Can Say Anything If You Smile

Since my total (robotic) hysterectomy for stage 1B, grade 3 uterine cancer in December 2013, I have had frequent checkups, as described in earlier posts. (See Uterine (Endometrial) Cancer – My Story & More.) During the first post-op year, the main topic of discussion was whether to do Pap tests. (See the May 13, 2015 post Pap-Free at Last.) The recommendations of the Society for Gynecologic Oncology (SGO) include five points for physicians and patients to consider following surgery for gynecologic cancer. The second point states:

Don’t perform Pap tests for surveillance of women with a history of endometrial cancer.

Pap testing of the top of the vagina in women treated for endometrial cancer does not improve detection of local recurrence. False positive Pap smears in this group can lead to unnecessary procedures such as colposcopy and biopsy.

Despite this recommendation, and because I had—and still have—a light, clear vaginal discharge, which has been present since I completed my vaginal radiation (brachytherapy) post-hysterectomy (see Radiation Therapy for Uterine Cancer – My Story & More), my gynecologic oncologist performed a post-op Pap about six months after my surgery. The report showed what was later proven to be a false-positive report of “Atypical Glandular Cells of Undetermined Significance (AGUS).” All subsequent exams and tests were negative. (See more on vaginal discharge below.)

During yesterday’s visit to my regular gynecologist for my annual checkup and six-month cancer checkup, he said he had been given this list of recommendations by other patients with different gynecologic oncologists. But he didn’t agree that, from a routine gynecologic perspective, Pap tests were superfluous (and potentially confusing) in women who have had uterine cancer. For completeness, he said, he would prefer to do the Pap.

I persevered in stating I was reluctant to have a Pap because of my experience with unnecessary colposcopies, a vaginal biopsy, and numerous Pap tests two years ago, which created a lot of needless anxiety, inconvenience, and expense. So, to his credit, my gynecologist listened sympathetically and said he would take a look first, and if he saw anything suspicious he would then do the Pap—with my permission because I’m “the boss.” So he looked and found nothing at all, which is the best thing to find after cancer surgery. So he agreed not to do the Pap. (His assistant had already prepared the test kit, which had to be thrown away because it was no longer sterile—a small example of medical waste.)

Ladies, one of the main purposes of this site is to encourage you to have such dialogues with your clinical teams so that you can participate in your own healthcare from an informed, empowered (not contentious) position. It was gratifying to be listened to and respected by my doctor, a big shift in the way medicine is practiced today compared with yesteryear. I believe we took the sensible approach, and we parted smiling. So if you enter into an honest, informed exchange with your medical team without undue anxiety, I think you can expect a similar outcome during your own course of treatment. (By the way, my doctor also somewhat sheepishly shared his own story of a false-positive report in his own life.)

More About Post-Treatment Vaginal Discharge—And a New Problem

Because I first noted this clear, innocuous discharge after radiation therapy, I was more annoyed by than concerned about this problem (“Panty-Liners ’R Us”). But my cancer team did not think it was related to surgery or radiation, so we proceeded with the unnecessary follow-ups described above.

Again, I asked my gynecologist about the source of this discharge yesterday, and he maintained that it was caused by a hypotrophic (shrinking) vagina and post-menopausal chemical changes. In addition, he said it was exacerbated by a prolapsed bladder (cystocele). I suspected this because I could actually feel it, but I was still disconcerted to get the official news. Although it is normal for bladders to descend in post-menopausal women because of weakened musculature and tissue, and also because my organs have also resettled into new positions following removal of my “lady parts,” my doctor said I could expect the condition to worsen from its current grade 1 position. This might require a procedure (such as non-surgical insertion of a pessary) in the future—but I plan to work to avoid that.

I asked whether doing Kegels would help, and he said they couldn’t hurt. What would help is losing weight, which would cause less pressure on the bladder (and everywhere else). Yep, that old problem of mine is still haunting me. And being overweight is a risk factor for uterine cancer, as I learned very well. And an important point: One nonsurgical treatment the doctor cannot give me is the use of estrogen cream to strengthen the muscles and tissues. No woman with a history of uterine cancer should use any product that contains estrogen, including those targeted to treat post-menopausal problems. Estrogen is a big culprit in gynecologic (and breast) cancers. (See Uterine Cancer Risk Factors: Ladies (and Gents), Please Read.)

So I have started actually thinking hard about everything I put in my mouth (as well as what comes out of it!), and also about how I move my body throughout the day. Being overweight is a problem too “big” to ignore, and I’ve paid a high price for it in terms of various medical problems. To avoid anything resembling surgery is powerful motivation to take action. I will keep you updated on my progress.

See further discussions of prolapsed bladder here: Urology Care Foundation, WebMD, emedicinehealth.

Two More Little Things

This heading is actually untrue because my “girls” are anything but little (partly from genetics and partly from being overweight). While doing my breast exam, my doctor noted redness under my breasts at the bra-line and announced that I had a yeast infection (candidiasis) there! I was very surprised, but he said it’s caused by perspiration under a (ahem) tight bra. He gave me a prescription for nystatin and triamcinolone acetonide cream (generic for Mycolog-II), an antifungal preparation with an anti-inflammatory corticosteroid that reduces swelling, itching, and redness.

However, this is such a small problem compared with breast cancer that I hope no one reads this as a complaint. I am grateful even for the yeast that hovers at my bra-line because it means I am not suffering from what the National Cancer Institute cites as the second most common cancer in US women after skin cancer.* For more information and support, breast cancer patients can go to a special section of patientslikeme®.

Also see Breast Cancer – Diane’s Story & More on this site, as well as Breast Cancer Risk Factors: Ladies (and Gents), Please Read.

Next Visit

My next checkup will be on the third anniversary of my hysterectomy, December 13, 2016 (it was a Friday in 2013). I suspect the oncologist will want to see me once a year, at least for the foreseeable future, alternating with my annual regular GYN checkup.

I will also ask him to check the status of my bladder prolapse. In the meantime, I’m Kegeling like crazy and increasing my general activity level while more closely monitoring my diet so I can lose some weight before then.

Let′s see what the next six months bring! Hope it′s good news for everyone doing battle with their own cancer.

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*Cancer.Net states that uterine cancer is the fourth most common type in US women. For information and support, uterine cancer patients can go to another special section of patientslikeme®. I have also had skin cancer—a basal cell carcinoma of the scalp; see Skin Cancer – My Story & More.

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