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

Ribbons for website-7.18.13

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.


 

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7 thoughts on “My Story – Uterine (Endometrial) Cancer: Three-Month Reviews, Views, & News”

  1. Pam Dear, you are an amazing, wise and courageous woman! I am thrilled that your reports were so very POSITIVE! You trusted your instincts and were rewarded with great results. This journey of healing has changed you and your many sisters of like forever. Trust that following the difficult processes will come many gifts. Fatigue is your body speaking her need of naps, quiet, gentle tasks in the gaining of renewed strength. Thank you for sharing your journey with all women in your blog. You are a herald for us. I am so proud of you, with love from your sister on the Path, Kathryn

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    1. Kathryn, if not for the support I’ve received from special people like you, this journey would have been joyless and pointless. I’ve learned so much, and my hope is that I can help others arm themselves with the information they need to make the best choices for them.

      I only wish I could take it a little easier–I have gotten myself into some very physical tasks at home, but I do rest in between. My body kind of makes me do that.

      Thanks and love…

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  2. I I could not be more proud or thankful that I have such a well researched daughter who is trying to not only help her own travels along this journey, but who is also trying to help others who need guidance and hope along the way. You have been through so much and yet you are intent on helping others, as well. Thank you and I love you. Mom

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  3. My journey and time frame has been similar to yours although my cancer was Grade1. I live in Australia and my treatment regime has been the same. Three brachy treatments of 7gys (my third and last will be Monday 31/3). I have experienced a few side effects mainly bowel changes and your post has been extremely helpful in assuring me that this is all part of the healing process. Thank you for sharing your journey.

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    1. Thank you for your comment, Denise. My bowel changes–more frequent stools and some fecal drainage–have improved. I have diverticulosis, and fiber has helped regulate my digestive system. My cystitis was bothersome starting a week after my 3rd and final brachy treatment, but Pyridium had a soothing effect, and the burning stopped within a week. I do still have some occasional irritation or tenderness on urination, but no more intense burning. I also have urinary frequency, although it isn’t too much worse than before my treatment. In addition, I still have some vaginal discharge, but I just wear panty liners–it’s not too bad. As far as I know, the only long-term side effects will be vaginal narrowing and dryness. So if you find you have some symptoms after your final treatment on March 31–which might not start until a week or so later–just hang in there. I’d like to hear how you make out. Best of luck–I’m sure you’ll do fine.

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  4. MY REPLY APPEARS BELOW TO THE FOLLOWING COMMENT. ALSO SEE THE APRIL 7, 2014 FOLLOW-UP POST.

    healing 2014
    healing2014 says:
    April 5, 2014 at 5:47 PM

    Hi Pam. i feel so fortunate to have come across your blog. i have been writing about my journey, but not in a blog. i guess i hadn’t felt my story is important to share, But going through this is a lonely process, when no one else you know has “been there, done that”.

    i was diagnosed with endometrial cancer on January 20, 2014, had the surgery on January 27 and am two treatments into brachytherapy radiation.

    its been a shock, and scary, and fighting the “system” that sells their poison and treatments well.
    i agreed to the brachytheray, and was told there were no side effects. and my bladder would not be effected. well, it is. and now i am angry and confused.

    i feel that i will not finish the treatment. and take my chances, with the healthy lifestyle and eating that i have adopted.

    Hello. I wanted to get a quick response off to you now, but would be happy to be in further touch later. For the moment, I want to encourage you to get that third and final treatment. Otherwise, you won’t have had the full dose of 21 Grays, and you will have suffered your side effects for nothing, It’s like not finishing a course of antibiotics–the microbes may still be alive if you don’t finish the medication. In your case, microscopic cancer cells might still be alive if you don’t finish your treatment. The window will close soon on your radiation opportunity, so please get your last brachytherapy. And please let’s continue to chat. I empathize with everything you’re feeling and wish you well.

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