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Does Endometrial Cancer need better PR? Does Endometrial Cancer need better PR?

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Unread 06-10-2004, 06:41 AM
Does Endometrial Cancer need better PR?

Not to diminish the heartache of our sisters with breast cancer, but why do we never hear anything about endometrial or uterine cancer? I'm so amazed at how many we have on this board with endo/uterine cancer but still you almost never hear it mentioned elsewhere. How do we get it out the word massively to women how important pap tests are and that any post-menopausal bleeding is not normal? Although I'm doing great now after my TAH/BSO on 03/03/04 and 28 radiation treatments, I don't want any other woman to have to undergo the same emotions and fears needlessly. What can we do, sisters? Carol
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Unread 06-10-2004, 07:18 AM
Does Endometrial Cancer need better PR?

I *do* think we need to get the word out more. Unfortunately, endometrial cancer is NOT usually detected by those easy Pap smear tests. Typically, you have to have an Endometrial Biopsy, which isn't something you do every year. Either that, or a more complete D&C, which isn't something you should do every year either.

And when it occurs in women before menopause, sometimes you just don't know it. Some women have heavy bleeding from it, others have NO bleeding, including no period. It's very hard to determine in some pre-menopausal women just what is going on.

I don't have endometrial cancer, just in the pre-cancer area myself (complex hyperplasia with atypia) but I had never heard of it before, nor did I know I was having symptoms... (I was getting very light periods, just brown yucky stuff for a day -- In fact, my doctor told me maybe my body had just changed and that was my normal period!!!) It took my Fertility doctor to find something was up with a transvaginal ultrasound when he noticed my endometrial lining was too thick and not shedding every month.

I'm all for more PR, but when symptoms vary or sometimes there are none, what do we ask for? An endometrial biopsy on every woman every 3 years or something?
Unread 06-10-2004, 12:44 PM
Does Endometrial Cancer need better PR?

Yes it does!
Here's an example:
I picked up a flier at my Radiation center today. It was for a free day at a local spa for breast cancer patients. I called the spa and asked if they would consider an endo cancer patient, and they declined me! Wah!

We would enjoy a spa treatment too!

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Unread 06-10-2004, 01:46 PM

None of the gynecological cancers gets much mention. I've had nurses ask me which arm not to use for shots--they ASSUME because I'm a woman I have had breast cancer. At the comprehensive cancer center here, they have a "care wear" department with false eyebrows, hats, scarves, etc.--all for breast cancer patients. A friend asked when she saw a shirt if they had it with a teal ribbon for ovarian and was told, "we mainly have breast cancer patients come in." So, how to get the word out? I don't know if there's a national group for your kind of cancer--if there is, contact and support them and see what they have in the way of support materials. Sept. is Gynecologic Cancer Awareness Month (also Ovarian Cancer Awareness Month) so contact the newspapers in Sept. with letters to the editor. Hit local insurers/HMO's, hospitals, major clinics, radio statoins and TV stations and ask them to acknowledge the month (and not just during the month). Push them for mentions on the news and referrals to their website for facts. Do followups when you don't hear. Talk about it if you're confortable with it. I let everyone know at my jobs when I was still working. See if someone from the paper or a station would interview you and others. In other words--WE are our own advocates. I just go it alone here and hope.
Unread 06-10-2004, 04:16 PM
Does Endometrial Cancer need better PR?

I agree. Mostly when I see anything about gyn cancers, it is about ovarian or cervical, with maybe a line or two about endometrial or uterine. I had barely heard of endometrial cancer when I was diagnosed. I have become an advocate of regular gyn exams and tend to really harp at my staff about it -- someone comes in for their annual evaluation and in addition to that I ask them when their last exam was and if they haven't had one in a couple of years I keep at them until they make an appointment. Of course working in the health care field I can do that, I wouldn't dare if I were working in business somewhere.

My sister went back to Arizona after spending a week with me after surgery, called her gyn and insisted on an endometrial biopsy since she was having some of the same symptoms as I had -- luckily it was negative. She says she is spreading the word out there among her friends.
Unread 06-10-2004, 05:37 PM
Does Endometrial Cancer need better PR?

I agree that endometrial cancer doesn't get the press that other cancers get. I spent about 6 months with symptoms that, i n restrospect, were very common for gyn cancer. Actually my symptoms (watery discharge) are much more common with cervical cancer than endometrial. I never really thought this was something I should be concerned about. If you read about the warning signs of cancer, it's usually bleeding, not a simple watery discharge.

Even my Dr. didn't immediately realize what was wrong and that it was a sign of cancer. My gyn also didn't recognize it as something that could be cancer. They were all pointing to other things. I was lucky that the tests that were called for were so general that they also showed that the issue was endometrial, rather than adrenal or a possible uterine polyp (initial diagnosis)

I am totally frustrated that endometrial cancer is so unknown among the general population. It's a very common cancer, but it is rarely talked about in the general media. Many women consider that is they get pap smears and mammograms they are fully screened for female cancers. We all know that is not the case (even pap smears don't catch all cervical cancers).

So, with this lack of information -- what can we do. I talk with every woman I know about the signs. I tell my daughter all the signs. And I make sure they are getting full gyn exams every year. We don't have a marathon, a walk for life, all the special stuff that the breast cancer patients get or the attention. But there are almost as many of us as the breast cancer patients. I don't know about you, but I really get my blood pressure up when I see some of the ads about breast cancer. It's as if this is the only cancer which affects women. On this board, we know better.

My love to all who have been diagnosed with this disease. I was lucky. Even after ignoring my symptoms (thought it was a blood pressure drug side effect) my cancer was caught early.

Unread 06-10-2004, 06:50 PM
Does Endometrial Cancer need better PR?

As many of you already know, I've been working on endometrial cancer education and awareness issues for a number of years. I recently posted the internet link to an article that appeared in the newspaper about me and endometrial cancer in April of this year. I considered it quite an accomplishment because the article appeared on page 1, and endometrial cancer rarely makes the newspaper at all, let alone the front page.

Coincidentally, just this past Tuesday, I wrote to the Chairman of the Gynecologic Cancer Foundation about the recently-issued press release on the Annual Report to the Nation on the Status of Cancer.

Here is an excerpt from my email message to the GCF Chairman and the internet link to the press release on the Annual Report:

"Dear Dr. ____________ :

I found the information on the death rates and incidence for the three major gynecologic cancers contained in the recently-issued "Annual Report to the Nation on the Status of Cancer" quite telling and frankly not at all surprising. As I would suspect you are aware, the press release on the report states that the incidence of cervical and ovarian cancer has decreased for the period 1992-2001. The news release also reports a modest increase in survival for ovarian cancer. Additionally, though not reported in the press release, the actual data on cervical cancer appears to show an appreciable increase in survival. Here is the link to the site:

As far as endometrial cancer is concerned, however, there was virtually no gain in survival and no decrease in incidence. While, in rationalizing the data, the press release indicates that uterine corpus cancer already has a high survival rate, it fails to mention that the mortality to incidence ratio/death rate had previously more than doubled (per 9/01 GCF/SGO press release). I am optimistic that these statistics will prompt the GCF/SGO to consider focusing additional efforts on endometrial cancer, so that more favorable data might result in future Annual Reports."

I have sent about a dozen or so prior letters and emails to the Gynecologic Cancer Foundation on a variety of endometrial cancer issues. Among other things, I have pointed out that certain recently-issued written information the GCF has provided to the public on endometrial cancer failed to specifically state what tests women need in order for endometrial cancer to be diagnosed or ruled out. However, these same materials have provided specific guidance on the necessary tests for ovarian and cervical cancer.

I would recommend that you consider emailing the Chairman of the Gynecologic Cancer Foundation and let your frustration about the lack of attention to endometrial cancer be known. Perhaps if this organization that is supposed to be representing our interests hears from enough of us on a regular basis, endometrial cancer will no longer be the "black sheep" of the gynecologic cancers. If anyone would like the name and email address of the GCF Chairman, please feel free to PM me.

Incidentally, the press release above reports a large increase in survival for breast cancer; I guess all that media attention to breast cancer is paying off.

Best regards,

Unread 06-11-2004, 11:20 AM
Does Endometrial Cancer need better PR?


I agree with you wholeheartedly!! A breast cancer survivor friend told me about a local spa who donates services to breast cancer survivors once a year. She had the nerve to say to me, "Maybe if they think you're dying, they would take you." I was livid!!

Unread 06-11-2004, 02:27 PM
In the Closet

I sometimes feel like the weird outsider as a cancer survivor. Although there are many many women right here in my area that have had it!!

I think it all goes back to "that part" of your body not being talked about.

It isn't common, but my cancer WAS found by a regular annual pap test. One that I almost cancelled since I hadn't had a period for one year. I thought I was through menopause and didn't need to have them anymore.....duh.

Thank God I had an ob/gyn that was very observant and wanted to err on the side of safety.

I had had no symptoms, I do not fit the stereotype, my ob/gyn was so shocked when my uterine biopsy came back cancer.

Nancy J.
Unread 06-11-2004, 04:52 PM
Does Endometrial Cancer need better PR?

You'll never know how thankful I am for this site. I knew very little about uterine/endometrial cancer, even tho I am in the health care field (on the clerical end). And it has been after my surgery that I have learned so much about it.

I would love to see more information about this type of cancer. My gyn thought my problem was hormonal, even tho I had complained about having a discharge that eventually became bloody. And when the diagnosis came back after the D & C, someone on his staff told me he was completely floored with my diagnosis.

I have a soft spot for breast cancer patients, too, because there have been several members in my family that have been diagnosed with breast cancer, including my mother. But I do feel there is not enough information out there about uterine and endo cancers.

And now after my mother has gone through a mastectomy, she is scheduled for an endo bx on Monday. I am so afraid that she has endo cancer. She has been bleeding for some time, and an ultrasound showed a very thickened endometrium. Mom is 81 years old and I really hate to see her have to go thru a hysterectomy. I'm afraid she won't bounce back as quickly as she did with the mastectomy......and I am also worried about the cancer spreading. Someone said "when it rains, it pours"

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