Actually, it was yesterday, September 20th. But since ALL of September is supposed to be gynecological cancer awareness MONTH, why not write about it today?
I have not written much recently about my whole experience of diagnosis and treatment for endometrial adenocarcinoma, to give it the technical name. But in the spirit of the season, it is worth reviewing a few key signs and symptoms.
Let's go to the American Cancer Society for some clear language about possible indications of endometrial cancer:
Unusual vaginal bleeding, spotting, or other discharge
About 90% of women diagnosed with endometrial cancer have abnormal vaginal bleeding, such as a change in their periods or bleeding between periods or after menopause. This symptom can also occur with some non-cancerous conditions, but it is important to have a doctor look into any irregular bleeding right away. If you have gone through menopause already, it’s especially important to report any vaginal bleeding, spotting, or abnormal discharge to your doctor.
Non-bloody vaginal discharge may also be a sign of endometrial cancer. Even if you cannot see blood in the discharge, it does not mean there is no cancer. In about 10% of cases, the discharge associated with endometrial cancer is not bloody. Any abnormal discharge should be checked out by your doctor. [italics added]
The tricky part about the bleeding is that for perimenopausal women, or for women with irregular periods anyway, it can be difficult to tell what's not normal. Certainly being in perimenopause made me more hesitant for a long time to think that the irregular bleeding I was experiencing could be from a malignant cause.
However, if I'd paid attention, or seen this particular description, I might have sought medical advice earlier. I did have a non-bloody discharge for months, and since it didn't seem to be connected to any kind of infection, I ignored it. Not such a good idea, as it turned out.
From the CDC, we have these sobering statistics about endometrial cancer:
Uterine cancer is the fourth most common cancer in women in the United States and the most commonly diagnosed gynecologic cancer.
In 2012 (the most recent year numbers are available)—
49,154 women in the United States were diagnosed with uterine cancer.
8,911 women in the United States died from uterine cancer. [italics added]
Five-year survival rates vary considerably according to many factors: the type of cancer, whether an adenocarcinoma, a sarcoma, or something else; the grade and stage of cancer upon diagnosis; the age of the woman; other health factors, including (sadly, of course) socioeconomic status and access to decent and affordable health care.
I pored over those stats in the first few weeks after diagnosis, let me tell you. Now, I know better that we are all in truth a statistic of one. Cancer is a different condition, person to person, and what takes one of us out might not be nearly as serious for someone else.
But two things about endometrial cancer still shock me: First, that there is no effective screening, even though it is the most common gyno cancer. Second, that there is no standard treatment for advanced endo cancer.
I suppose I am easily shocked if these disturb me. And perhaps it should be less of a priority to have a good screening method for endo cancer, since so many women do have unusual vaginal bleeding. Still, it's not always the case, and as my own experience shows, bleeding alone isn't always enough of a clue.
Perhaps I contradict myself by believing there should be a standard protocol for treating endo cancer when I also acknowledge how idiosyncratic the condition is. But I also haven't seen too many new, groundbreaking studies come out about innovative treatments or gene mapping for the condition, either. It's a serious problem, and (unlike most other cancers), uterine cancer survival rates have not significantly improved over the past thirty years. [See p. 22 of this general report on cancer rates in the U.S.]
Frequently, obesity and lack of overall physical fitness are identified as factors that contribute to the continuing problem of uterine cancer for U.S. women. Relatively little attention in the mainstream literature has gone to examining other potential causes, such as the presence of estrogens in plastics. It's not easy even to get consensus about the role that estrogens from natural sources play in the development of uterine cancer, which does make it difficult to assess one's options if one has, like me, tumor cells that are strongly estrogen-positive.
The ultimate message I hope to convey here to all the women of a certain age who may read this diary, and to everyone who loves women in that demographic is: Attend to your body. Know what's normal for you and what's not. Keep track of your cycles all the way through perimenopause. If something seems amiss, move heaven and earth if necessary to figure out what it is. And, if the worst happens and you do have endo ca: Never give up. My situation got worse before it got better. Yet here I am, still dancing with NED, over four years from hearing the catastrophic news that the cancer had gone to my lungs.
We are in this together, in any case. Please feel free to treat this diary, as you may do with all MNCC diaries, as an Open Thread.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
PS: I want to add the link to this excellent, 2-page "Uterine Cancer Fact Sheet" from the CDC. It's great. There are others available under the heading "Inside Knowledge: Get the Facts about Gynecologic Cancer": for cervical, ovarian, and vulvar/vaginal cancer. Each sheet is also available in Spanish. These are excellent resources deserving of wide circulation.
But even more importantly: these Fact Sheets are part of a whole PR campaign about gyno cancers in general! Who knew?!?! I did not, until this very moment.
PLEASE go take a look: Inside Knowledge: Get the Facts about Gynecologic Cancer.
This information might save your life, or the life of a woman you love.