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Awareness or lack thereof

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

Were you aware of signs/symptoms of endometrial cancer? I don't know why or how, but I always knew that post menopausal bleeding was a symptom and should be reported, but I don't think anyone with a white coat ever told me anything - ever.

Today I was at a meeting and chatting with a woman about my health challenges this past year. She commented that she thought she had gone through menopause years ago and recently had about a week of spotting. I asked her if she'd reported it to her gyn. She asked why - afterall it was only once and it stopped, and it wasn't very much. She may have had an incling that this is not normal, but had no idea how serious it could be. She's a very bright woman - she simply didn't know.

There is something wrong that women don't know this information. This woman has always had good health care, has a gynecologist, gets regular exams, has even had a couple of abnormal pap smears and the guy never told her anything other than see you in a couple of years?

There are pink ribbons, TV and magazine ads all over the place about the importance of mammograms, self exams, and signs and symptoms of breast cancer. Where's the awareness for endometrial cancers?

(my friend went right home and emailed her gyn).

Suzanne

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

that you and this woman had this chat? I think it is completely unacceptable that the health care community keeps women in the dark about the symptoms of gynecological cancer. Yes, we know to get our yearly mammograms and pap smears; but many of us know NOTHING about the symptoms of uterine, ovarian, and vulvar cancers.

Barbara Hammer, an experimental filmmaker living in NYC but traveling all over the world with her films, made a film about her experience surviving ovarian cancer. The film was funded by Memorial Sloan Kettering, which ultimately decided not to show it. In the film, Hammer argued vehemently that ovarian cancer DOES absolutely have symptoms; but the medical community does not tell us what to look for. In the film, Hammer shares those symptoms.

One thing that I have learned from this board is that we have to advocate for ourselves. We need to read, talk with each other, demand the tests that can save our lives, and make a stink when all else fails. We can't expect anyone to really, really care about our health except for ourselves...and possibly each other.

In STRONG sisterhood,

Jill

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Suzanne:

I started to have problems with digestion problems way back in 2004. I also had a painful experience during intimitancy with my husband in January of 2004. I went to my PCP who didn't really say anything. I pressed and then he scheduled me for a colonoscopy. After several months I had the colonoscopy. All good. A little diverticulities. I was still experience digestion problems and was starting to have pain. I didn't feel right so I went to my gyn. He indicated to me at that time that I had severe endometriosis (which I didn't know) and that he wanted me to have a laparoscopy. I scheduled that and had one. It was confirmed that I had severe endometriosis (not cancer)and that I would need a total hysterectomy. He also scheduled me and I had a internal sonogram which viewed my ovaries. Again, everything seemed ok.

A whole year of this went on. I am now in severe pain and taking motrin daily. I was given stronger pain pills but if the pain started before I took it, I would be almost passing out because of the pain until the meds took effect. I felt like I was dying both physically and emotionnally.

The doctor wanted me on lupron for six months before surgery to help lessen the effects of the endometriosis. It ended up being about 7 months before my surgery in September of 2005. Again, no talk of cancer. I had even asked about getting some kind of scan and said no need for it.

Had the hysterectomy. Bam! Pathology came back cancer. So, four weeks later, had to have another surgery for staging. The rest is history.

Kathy

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I started with some minor spotting (not real bloodly either), and thought well getting closer to peri-menopause so that must be it....dah! Knew I was schedule for my yearly OB exam and figured I bring it up to my doc. Well my OB didn't second guess or assuming anything he just had me go across the hall for a vaginal ultrasound. From there I had D&C, which diagnosed cancer and then to hysterectomy and treatments.

If it weren't for my doc being aggressive about testing I could still a year later been worse. Now if this doc did the vaginal ultrasound and nothing was found, I'd most likely look at him with trying to get money for unnecessary tests. Catch 22!!

If you have not read any of Fran Drescher's books get one. I read her main one (sorry but forgot the name) which told about her ongoing years of female issues and going to many, many docs who couldn't diagnose her with anything...just try this or take this pill. So many of these docs just don't care or not qualified???

Do agree with someones comment that we are in control and must be forceful to ask for what we want...be a test or another doc referral. Get to the bottom of what we have concerns about.

In the end, no one knows our bodies better then we do.

Best to everyone...
Jan

antigone_42
Posts: 8
Joined: Jan 2011

I agree there needs to be more awareness out there for our uterine type of cancers. My mother had had post-menaposal spotting for years and never done anything about it until I was diagnosed and started talking to her about my symptons. It's really the only blessing so far that has come out of my diagnosis is that they caught hers, we will find out soon how far along it it.

I beleive I read somewhere that uterine cancer is represented by an aqua ribbon, but there aren't any awareness campaigns out there telling women what to look for.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I spotted and had symptoms for years. Unfortunately, it never dawned on me it was cancer. Don't know if I was in denial or just ignorant. Doesn't matter now. Can't change the past. Hopefully, people reading our posts will realize they might need to seek help early.

bonniesue
Posts: 126
Joined: Apr 2009

I absolutely agree that there is lack of awareness and women believe that a normal pap and neg mammogram makes them safe from harms way. Cervical cancer can be diagnosed with a pap but endometrial/uterine can be silent. There is more awareness for other cancers in women and uterine is put on the back burner and tranvaginal ultrasounds should be performed with pap smears. And as far as PET/CT it has lower radiation than cat scan and is more sensitive for staging. Has been used to stage other cancers but again uterine and endometrial not given as much attention as other cancer. NOPR may help to get Pet scan fusion funded for future uterine cancer studies. Also AFLAC wonderful(NOT) insurance with that duck has been awful to deal with to get cancer coverage-- loads of excuses not to pay ie do not have CPT codes, have gyne onc rad give CPT codes but records have been sent, resent need more oh denied sorry cringe when I see advertisements. This posts addresses many of my thoughts but the only one that has addressed the uterine endometrial issue is Fran Dresher at Cancer Schmancer and she was persistant and still it took a couple years for her diagnosis lucky early yet. Family doctor says he has seen more endometrial cancer in women as hysterectomies are not being done like in the past-- interesting observation from him.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Doctors went through a period in which they were severely critizied for doing too many procedures and hysterectomies. My mothers generation had alot of hysterectomies; she has four sisters that had hysterectomies. I expect that more women are going to have endometrial cancer as they age because hysterectomies are way down. With my use of tamoxifen I would talk to my Doctor about hysterectomy and it was always, "no, no, we don't do that for tamoxifen anymore." I think perhaps we need to think more about these surgeries; if you have a question the public should talk to us. We are more than a statistic but women who have alot of suffering due to rough treatments.

I agree more education is needed. I believe if a woman is past childbearing and is having so many problems they can't put their finger on then perhaps hysterectomy is indeed needed.

Your friend,
Diane

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Diane,

You are so right. When I was first having problems, I went to every doctor and no one could find anything. I had a laparascopy and that is when they said I had endometriosis (not cancer). Then it was decided I needed a total hysterectomy. I asked for a scan, but the doctor said that endometriosis would not really show on the scan. It would, however, probably shown the cancer that I had and would have saved me from having another full surgery for staging.

SOmetimes your gut feelings are right.

Hope all is well with you and you are enjoying Spring time.

Kathy

Aderyn
Posts: 18
Joined: Apr 2011

I had horrific periods (both amount of flow and pain) for many months before menopause, and none of the doctors I complained to took it seriously. They acted like I was being a big sissy about my period, when I had never had any problems with it in my life before (never one of those girls who had to miss gym class or complained of cramps or anything). Now I find out those might have been symptoms of endometrial cancer even then. I agree they have gotten gun-shy about jumping to hysterectomy too soon, but I wish someone had at least suggested hysteroscopy. It wasn't until I'd been without a period for a couple years and then started having spotting that someone (new, young GYN) sat up and took notice. Too late. I had my first appointment with her on Monday, advanced to D&C on Thursday, and had my first gynecologic oncology appointment the following Tuesday. I feel like Dorothy caught up in the tornado -- one minute everything was calm and bright, and the next everything is whirling out of control.

Jo Ann

RoseyR
Posts: 464
Joined: Feb 2011

Agree with all of you that unlike breast and cervical cancer--tests for which are widely publicized--uterine cancer needs more aggressive PR. I too walked around undiagnosed for a year with serious endometrial carcinosarcoma because I went to a gynecologist "highly recommended" by a sophisticated friend. I'd been having symptoms that I knew signalled a problem, but all this doctor--well into his fifties, Ivy League education--did when he found no sign of infection was to give me a Pap smear and order a mammogram and speculate that I was probably a little low in estrogen now, and that he saw nothing to worry about.
This, although I told him I hadn't been to a gynecologist for four years!

When my symptoms didn't abate after nine months but grew worse, I started to do my own online research. On nearly every web site on uterine cancer, what did I see? A descripton of my symptoms, symptoms I had presented to him. By this time, I was in pain with aching in my groin and lower back. I didn't want to return to see HIM but any other gynecologist I called had a waiting time of nearly three months to get an appointment. So I went back and asked for further testing. Finally, he did an endometrial biopsy. A few days later he called to say, "You do have endometrial cancer, but the good news is that it's the least aggressive form of the disease, so a hysterectomy will take care of it." (As if a hysterectomy were a walk in the park!)

The irony is that when the pathology report came back after surgery, only then did I find that it was hardly "the least aggressive strain of uterine cancer," but one of the most aggressive--carcinosarcoma.

What does all of this underscore? The need to be vigilant and proactive through every phase of our treatment--and to trust our own instincts. We women know, intuitively, when our bodies are behaving in strange ways.

The ultimate irony is that my job doesn't offer so great a salary, but it does offer great benefits. Yet this doctor couldn't be bothered to do a biopsy or ultrasound, so ten years of backbreaking work at this job to GAIN those benefits were meaningless in his hands. And although even if he'd caught my cancer a year earlier I still would have needed a hysterectomy, I would have been stage IA, not IB.

Worse yet, the tumor might EVEN have been less aggressive had it been caught earlier because when i asked my oncologist about the disparity between the first biopsy and the pathology report, she muttered, "it [your tumor] may have morphed--' I.e., might have changed over a year from a benign to a more aggressive cancer, requiring chemo and radiation, not "just" a hysterectomy.

I often feel we are living in an overly litigious society, but does anyone think this cavalier dismissal of symptoms that most web sites associate with uterine cancer warrants a suit for malpractice?

Exasperated,
Rosey

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

No, It does not.
Because most every woman approaching menopause has similar symptoms. That is why doctors brush us off. It is when the symptoms become so severe that they take a closer look. They shouldn't be punished for following protocol. What needs to change is the entire attitude of the gynecological community.
You say your cancer was stage Ib. Mine was stage IIIc high grade UPSC. My original gynecologist missed an abnormal pap smear that would have warranted a biopsy.(Someone in her office probably filed it instead of bringing it to her attention.) Still, I don't feel that she should be sued. She was a decent physician who served a great many women.
If you ask the women on this board you will probably find many similar stories.
We have lost too many good doctors because of litigation. I don't expect doctors to be gods. I would not sue.

That being said I'm sorry you feel angry, but be grateful it had not progressed further. Live every day to the fullest.

Laura

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

change, but doctors and health insurance companies SHOULD be held accountable. There ARE distinct symptoms of endometrial cancer; and despite the fact that these symptoms could be benign, many--if not most--of the women with gynecological cancers present with them. WHY can't testing be more extensive...and earlier?

I went to my FEMALE gynecologist complaining of post-menopausal spotting. She brushed it off, telling me she was "positive" the spotting was due to something benign. When I pushed, she sent me for a pelvic ultrasound, not even a transvaginal ultrasound. This test showed nothing, and my doctor basically said "told ya so!"

Almost a month later, when I had suffered one or two more spotting episodes, I stormed into my gynecologist's office without an appointment and told the receptionist that I would wait all day but that I was having an endometrial biopsy. My gyne, when she finally became available, screamed at me but went ahead and did the biopsy. A few days later, she called me to come to her office. Hanging her head, she told me I had UPSC.

Although I was lucky--Stage 1a, confined to a polyp--I still wonder how long it takes for a polyp to become cancerous. I needed chemotherapy and radiation and still am furious at my gynecologist. Why CAN'T she be held accountable?

Laura, you talk about our losing good doctors. What about the "good" women whom we literally have lost because of the cavalier attitudes of these good doctors?

Just my humble opinion,

Jill

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

Jill,
I definitely believe that standard of care needs to change in regards to post-menopausal bleeding. In that instance an endometrial biopsy should always be performed. I really think doctors shy away from performing them because they want to spare the patient the pain of the procedure. Although my pain was minimal, I have read many procedure notes that described significant patient pain. Some even having to abort the procedure in favor of doing it under anesthesia.
Still I really believe that we in the U.S. need to find another avenue besides litigation, or we will have to ration care even more than we already do, especially given the aging of our population.
I also felt angry with my doctor and briefly considered a lawsuit, but then I realized that she didn't give me the cancer and even if she had caught it in it's earliest stages it wouldn't have changed the outcome and I still would have had the same treatment. I could tell that she felt really bad about the missed diagnosis and I hope that in the future she will be more attentive.
Maybe I am too forgiving, but that is how I have chosen to deal with it.

Laura

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

My friend whom I referenced in my initial post went to see her gyn April 18. She is scheduled for a D & C May 27. She had no other tests or exams (endo biopsy, transvaginal ultrasound). To me, it seems like a long time until May 27 to do anything diagnostic, but what do I know. My gyn did an endometrial biopsy on the spot because it's such a simple procedure (for her). This had been my experience on another occasion as well.

Suzanne

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

Hi Suzanne,
A D & C is really a better diagnostic tool than a biopsy and will render a more complete diagnosis. Giving her doctor a heads up on what to expect should she have to go to a hysterectomy. I know the wait can be hard though.

Laura

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

I'm walking Saturday in the Susan B. Komen Walk for the Cure as a survivor. I just had a brainstorm. Survivors also get hats. I'm going to put a peach ribbon on my hat! Maybe someone will ask about it . . . or not.

Suzanne

MarieA
Posts: 18
Joined: May 2011

I started bleeding and spotting about eight months ago. I visited a doctor twice and once they prescribed antibiotics and then the next time told me blood in my urine was normal because of the cumadin I was taking. It wasn't until I asked to see a specialist that something was done. They found endometrial cancer after a D&C, thank god I finally got the nerve to say no, this is not normal and I need to look further into it. Thank you for your post. I think women need to be more proactive, but I also think women need more information about the signs of uterine cancers/

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