My Story – Uterine (Endometrial) Cancer: Radiation “The New York Way”

             David Lloyd – New York City

Yes, as noted in the February 15, 2014 post, my Valentine’s gift this year came wrapped in “21 shades of Gray.” This is the standard dosage for high-dose-rate (HDR) vaginal brachytherapy following hysterectomy for uterine (endometrial) cancer–7 Grays (Gy) of radiation (iridium-192) given in three treatments. Iridium-192 is a radioactive isotope of iridium with a half-life of 73.83 days and is also a strong gamma ray emitter often used to make dirty bombs. No wonder my radiation nurse wore such an overprotective uniform:

Anyway, the important point in this post is that different institutions advocate different models of therapy, and this results in a variety of side effects that changes from woman to woman.

“The New York Way”

Recently, a woman whom I’ll call Gemma got in touch using the Contact Form to compare notes on side effects from vaginal brachytherapy, which she was undergoing at another well-respected institution in the middle of the country. She has a very similar profile to mine–about the same age, history of vaginal bleeding in early September that wasn’t of great concern, tests and diagnosis in November, total hysterectomy in December with almost the same final pathology report, and vaginal radiation in January-February. However, her radiation treatment plan differed slightly from “The New York Way,” which is based on the model used by the Memorial Sloan Kettering Cancer Center in New York City and is also used at Saint Barnabas Medical Center in Livingston (Short Hills), New Jersey, which is not too far from NYC and is where I had my surgery and radiation.

The primary difference in our vaginal brachytherapy treatment plans is that Gemma had her total dose of 21 Gy in three 7 Gy fractions spaced two days apart, whereas my three 7 Gy fractions were spaced about 10 days apart. I’m not in a position to know whether this made a difference, but Gemma had some slightly more bothersome after-effects than I had. After her first treatment, she had very few side effects, although she noticed “a little bit of breathing trouble.” However, after the second treatment two days later, the out-of-breath feeling started about 1 1/2 hours later, and she became more fatigued throughout the rest of the day. What troubled me a little more was hearing that she also had “some sort of spasms” in her vagina. She asked her doctor whether she could have the treatments a week apart, but evidently the model at her institution is to give the three treatments much closer together. She also tried to talk the doctor into letting her skip the last treatment, but he said she would end up having side effects anyway and possibly would not protect herself from cancer recurrence. After her third and final treatment, which she had about 10 days before I had my third and final treatment, she said she felt less fatigued, but that she had “some strange sensations” in her pelvic area and “lots of small spasms or twinges of pain, like static electricity sparks” in her vagina and rectal area that felt as if they were pulling or tugging. Although they were not debilitating, they were uncomfortable. Today, I was happy to hear that the symptoms were diminishing.

In comparison, I would say I had no effects after the first treatment, but after the second treatment I became more aware of bowel effects (looser, more frequent stools and gas) and bladder changes (more frequent urination, slight tenderness in the urethra). However, I can’t say for sure whether these were a continuation of effects following the surgery and before the radiation or whether the radiation was causing or contributing to them. After my final treatment last week, I would say that the tenderness in my urethra has been more pronounced and is what I would now call irritation, but not burning pain. It’s harder to say what is contributing to bowel changes, so I am continuing to rethink what I eat to see how I can manage this situation. Gemma also has ongoing bowel changes since surgery and radiation. I didn’t notice any additional fatigue after the treatments and am starting to regain some energy now two months after the surgery. The doctor said my bladder and bowel symptoms might taper off over the coming weeks.

Future effects that have been promised going forward will occur in the vagina itself, which will become shorter, narrower, and dryer–I should say “increased” before each symptom as these are effects of menopause anyway. When I go for my one-month post-radiation checkup on March 17, the same day I have my three-month post-surgical checkup (I’ll have to remember to wear green that day, especially since my surgeon is Irish-American), my radiation oncologist will be giving me a dilator. I’ll have to use this twice a week to keep the vaginal canal open enough for future examinations (and other activities–which, by the way, are a good way to achieve the same result without using a dilator). No other side effects are anticipated, but because they would depend on the mitotic activity of the cells in various tissues, they are difficult to predict.

Gemma also expressed some anxiety about the need for radiation after surgery. I also had this concern and discussed options at length with the radiation oncologist. I finally agreed to go with “the New York way” of vaginal brachytherapy as described and not to do what I’m calling “the New England way.” The doctor said Harvard would recommend five weeks of pelvic radiation followed by three brachytherapy treatments. Even though my cancer was described as “aggressive,” I would have received little reduction in recurrence risk with this combination therapy and a large increase in the possibility of more extensive side effects. (See more in the January 16, 2014 post.)

Information Is Empowerment

Gemma’s other comment was that menopausal women are not given enough warning about the dangers of vaginal discharge and, especially, bleeding. I agree. No one ever advised me that postmenopausal vaginal bleeding was a sign of cancer, only a sign of a thickened endometrial lining requiring a D&C (dilatation and curettage). A pelvic ultrasound detected the thickened endometrium, and a D&C revealed the cancer.

This was the reason I started the blog: to raise awareness and encourage people to ask questions, get information, and learn to be full participants in their own care. I suggest that all peri- and menopausal women review the November 20, 2013 post on uterine cancer risks, be alert to bodily changes, and never be afraid to keep asking questions until they’re all answered.

Notes of Thanks 

Deep gratitude to Cyrus, Pat D., and Sharyn for providing transportation to my radiation appointments (and to Susan for offering), sometimes in challenging weather conditions. And speaking of this, special thanks to neighbor Steve for rescuing me the other night when my car was stuck in the driveway–and I was stuck in my car. And to “the Pats”–Pat D. for my first post-radiation dinner outing between storms the other night and to Pat R. for a lovely lunch outing in the sunshine yesterday, during which she gave me this striking necklace with its very important “seize the day” message of encouragement:

And, as always, much appreciation to everyone who has provided ongoing support.

Thank you for keeping me going.