Awareness or lack thereof

Kaleena said:

Suzanne:
I started to have
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

bonniesue said:

uterine endometrial cancer awareness/ US /PET CT fusion overlay
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.

RoseyR said:

Another Missed Diagnosis


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

Rewriter said:

I agree that the attitude of the gynecological community should
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

Double Whammy said:

Follow-up
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