My Story – Uterine (Endometrial) Cancer: Three-Month Reviews, Views, & News

Cancer Awareness Ribbons – Foundation for Women’s Cancer

As I mentioned in the November 15, 2013 post, awareness ribbons are all over the web, although the color schemes may not yet be standardized (and ribbons and products related to causes have become very commercialized). I happened to wear a turquoise-aqua-tealish-color sweater (with matching socks!) to my medical appointments this week, and my surgeon said, “You’re wearing the color of gynecologic cancer–teal.” More specifically, teal is the color associated with ovarian cancer, but it is also used by some for all gynecologic cancers, although above purple is used for this purpose. Anyway, “my” specific color remains peach.

Back to business. Earlier this week, I had my one-month post-radiation visit with the radiation oncologist and my three-month post-hysterectomy visit with the gynecologic oncologist. Two pelvic exams back to back? Yes, I did that to myself because of the distance to St. Barnabas in Essex County, NJ from my home in Hunterdon County, NJ–where we do not have specialists in the fields for which I needed treatment. This is something I was surprised to learn last year–that none of my surgeries or treatments could be done in my “home” town, Flemington. Even the Mohs micrographic surgery for the basal cell carcinoma of my scalp (see the March 21, 2013 post) had to be done out of town–and out of state, in PA.

I saw the radiation oncologist first and reviewed with her the side effects I’d experienced after completing my third and final brachytherapy treatment on Valentine’s Day (see the February 14, 2014 post)–cystitis, discharge, and fatigue (see the March 6, 2013 post)–and what I could expect going forward, which will primarily be vaginal canal narrowing and increased dryness (beyond that caused by menopause). For this, she prescribed the use of dilators, which she gave me, and/or the more natural way of keeping the vagina open, which sounds a lot more appealing. 😉

But I had other things on my mind as well, particularly what I’d been reading on the Web about treating women with my specific diagnosis–stage 1B endometrial carcinoma (70% penetration into the myometrium), tumor grade 3 (made up of almost entirely abnormal cells). I became aware of the MD Anderson Cancer Center (University of Texas) treatment algorithm for endometrial cancer. For my diagnosis, which they (and my doctors) classify as “high-intermediate risk,” the chart specifies 45 Grays (Gy) of pelvic vault radiotherapy with or without brachytherapy. As discussed earlier (see the February 20, 2014 post), I had opted not to have both external beam radiation therapy (EBRT) plus internal vaginal radiation (brachytherapy) because the potential for side effects seemed to greatly outweigh a possible further reduction in the risk of recurrence of only 1-2%. Brachytherapy alone would reduce my risk of recurrence from 15+% to about 8%, and adding pelvic therapy would reduce it to 6-7%. The radiation oncologist simply reminded me that I’d made an informed decision with which we’d agreed to go forward because no clinical trials to date specifically address my classification. It is true that different institutions have different philosophies and use varying modalities and algorithms for treatment, and I reminded her, in return, that this can be confusing for patients.

My other question was about the “typing” of my grade 3 tumor, although my doctors and others using the Sloan-Kettering/New York model of radiation treatment do not use such a classification system. I’d read about this typing system on the American Cancer Society site. ACS classifies grade 3 endometrioid tumors (like mine) with those arising from other non-endometrioid types of cells, further stating that these “type 2” tumors are more aggressive and have a poorer outcome. But knowing about this system of typing tumors doesn’t really change anything–and added unnecessary concern for this patient. We all need to find a safe boundary between exploring the world of information and settling back with what we already know, and this can be done only through personal experience and by using sound judgment.

The pelvic exam (which hurt quite a bit) revealed nothing remarkable, just a little redness, and the radiation oncologist said I was healing well and should return to see her in three months–and start using the dilators. I asked again about the fatigue, which seemed to increase markedly following radiation. But she said the brachytherapy was not the likely cause of my tiredness because it was targeted to the site of surgery and that my fatigue was just a reaction to “everything I’d been through.”

So, on to see the surgeon. I hinted that I hoped he might not have to do a pelvic exam since I’d just had one and that it had hurt, but he assured me that he’d done thousands of them and that it wouldn’t be painful. Interestingly, that turned out to be true. He said I was healed and that he saw nothing abnormal. We briefly discussed all of the above about my radiation treatment decision, and I reiterated that he had told me that the Society of Gynecologic Oncology (SGO) recommended brachytherapy alone for my diagnosis. He said that second-guessing my treatment decision was now moot because the window of opportunity to do both pelvic and vaginal radiation was closed. He ended by saying I’d made a “good choice.” I stand by my decision to have brachytherapy alone, but it was good to have this confirmed. And, by the way, he echoed what the radiation oncologist had said about my tiredness–it was just due to “everything I’d been through.”

We discussed future follow-ups, and to my surprise the surgeon said future visits would consist of only pelvic exams every three months for two years and then less frequently thereafter. He said I didn’t really need to return to see the radiation oncologist because my treatment was complete (this was a relief). To my surprise, he also said that I would be getting NO Pap tests, blood tests, or X-rays. He handed me a fact sheet entitled “Five Things Physicians and Patients Should Question” from the SGO, which was developed as part of the ABIM (American Board of Internal Medicine) Foundation’s Choosing Wisely Initiative. He did say that if a future pelvic exam revealed any “lumps or bumps,” he would biopsy them immediately and take it from there. So far, I’m lumpless and bumpless. I also asked about migrating cells causing tumors in other parts of my body (such as the lung) and about the possibility of secondary cancers from the radiation itself. He, like the radiation oncologist, said the risk of either is remote. He ended the visit cheerfully, telling me that the risk of recurrence of any type is small and that I’d be fine. Let’s hope all this cheerfulness is predictive.

I was heartened to learn about the sensible “Choosing Wisely” approach because it is consistent with why I started this blog–to help people make informed decisions about their healthcare and to enter into thorough discussions with their healthcare providers about treatment options, which need not be as extensive or aggressive as some might think. In fact, a week before my appointment with the surgeon, his office called me and said he’d ordered a CAT scan. I asked why and whether this was typical for a three-month post-op visit. They didn’t know, but said it wasn’t typical. The staff offered to discuss the need for the scan with my doctor and call me back, so I had a few tense hours wondering what I might not have been informed about. It turns out that the recommendation was based on the lymphatic drainage I’d had after surgery, but this stopped in January (see the January 10, 2014 post)–so no CAT scan. Always ask.

He also encouraged me to see my regular gynecologist for my yearly exam, and when I go next November–a year into my endometrial cancer journey–I will be sure to take all of my hard-earned knowledge with me. It is vitally important to prepare for any healthcare visit, and for a quick review before your next visit, please see the American College of Obstetricians and Gynecologists (ACOG)’s “Making the Most of Your Health Care Visit” Patient Education Fact Sheet, as well as their Cancer of the Uterus FAQ Fact Sheet.

By the way, I also called my family doctor’s office to ask about the fatigue, and she said I could come in for early blood tests to check my thyroid level, but I’m not due until May. She said the tiredness was most likely caused by “everything I’d been through.” So I’ll wait a bit and see whether the fatigue–and the frustrating insomnia that seems to be accompanying it–improve.

Final word: My surgeon said that I was more informed than most patients, and it is my hope that this blog will help change that.

RESOURCES:

• Society of Gynecologic Oncology (SGO)
• – Uterine Cancer
• – Endometrial Cancer Treatment Summary and Survivorship Care Plan
• ABIM (American Board of Internal Medicine) Foundation
• – Choosing Wisely Initiative
• – Five Things Physicians and Patients Should Question
• American College of Obstetricians and Gynecologists (ACOG)
• – Making the Most of Your Health Care Visit (Patient Education Fact Sheet)
• – Cancer of the Uterus FAQ Fact Sheet
• MD Anderson Cancer Center (University of Texas) – Treatment Algorithm for Endometrial Cancer

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