Patient Comments: Uterine Cancer - Describe Your Experience

Please describe your experience with uterine cancer.

Comment from: madewy, 55-64 Female (Patient) Published: August 12

My doctor never used the word cancer. I wish he had. Instead he told me I had endometrial carcinoma. Although I knew what carcinoma meant, I wasn't as alarmed as I should have been and didn't do much research myself. I was lax. So I went unquestioningly along with a surgeon who was recommended to me and had a total hysterectomy with bilateral oopherectomy. I've had five way cardiac bypass surgeries in the past, and compared to the hysterectomy and its extended recovery, I'd rather have more heart surgery than another hysterectomy. At the time, I didn't realize there are alternative treatments, but since then I have learned a lot. So please, research carefully and thoroughly and make an informed decision!

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Published: July 28

I am 58 and just diagnosed with uterine cancer. (I also have diabetes, high blood pressure and am overweight, all risk factors) as I have just learned. It has been a hard pill to swallow and scary. I will go in for a complete hysterectomy (uterus, tubes and ovaries) in 16 days and I can tell you part of me is terrified but most of me has confidence in my doctor and I feel what will be will be. She tells me this is the best kind of cancer to have, if you are going to get cancer, sort of reassuring (but still scary). Do not know what outcome will be, but I will report back after my surgery. At least I know what is wrong after all this time! I did have a biopsy 7 years ago and all was OK, so do not know how long I have had the cancer.

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Published: June 17

I am 31 years old and was diagnosed with having Endometrial Stromal Sarcoma after having a myomectomy to remove a fibroid. That was my second surgery in 2 years the first a D&C to remove cyst and blood clots after surgery. My doctors are pushing surgery as the main and only treatment but I desperately want children and have been with my fiance for 8 years.

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Published: June 17

I found out that I had uterine cancer in July of 2007 after having an blood transfusion and then I went for the surgery in September since having it I have felt tiered and sore I was going through having my period in regular and clots a lot I never went through the chemo or radiation but I have had a lot of pain.

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Published: June 12

I am 77 years old. I found out I had uterine cancer in Aug of 2007. I had four chemo rounds, one hysterectomy, and another four chemo rounds. It is now June of 2008. My doctor says I have no cancer now. It has been a long road. I'm not to sure if I really believe him. I know it can come back. I weighed 142 when I started, now I weigh 115. I'm having a hard time gaining weight.

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Published: June 09

I was diagnosed with uterine carcinosarcoma after 4 months of symptoms such as malodorous discharge from my vagina and later a blood tinged discharge and later copious spontaneous bleeding. An endometrial biopsy disclosed "nothing for alarm" as my doctor said and I continued with symptoms and then pain and cramping. I consented to a D&C scheduled one month later, (NO HURRY!)Which disclosed uterine carcinosarcoma. The first gynecological oncologist I saw totally dismissed my pain and told me that my uterus was slightly enlarged and at least surgery would end my bleeding. The next gynecological oncologist said that my uterus was enlarged to 14-16 weeks pregnancy size but there was no explanation for my pain. He performed a total TAH/BSO with lymph node sampling but not left para-aortic sampling which is where I presented with a recurrence 5 months following surgery. He was at least advanced enough to utilize immunohistochemical staining which revealed a left obturator lymph node involvement. (No lymph nodes were visibly affected). After the pathology results were in, he stated that he should have concentrated his lymph node sampling more on the left side but since I had right sided pain, he had concentrated on the right side, i.e., no left para-aortic lymph node sampling. He mandated that I receive whole beam radiation 6 weeks post surgery but I chose to locate a facility which would deliver IMRT radiation to my pelvis. Two months after my radiation was complete, I presented with a backache to my oncologist who had orchestrated my IMRT radiation who told me I was simply getting older (I NEVER have backaches!)and I was advised to take ibuprofen for several weeks. After several weeks, I still had a backache and called my original gynecologic oncologist who ordered a CT scan and scheduled me to see him one month later whereupon he told me I had a neoplasm in the left para-aortic region and that only radiation would shrink it(as no one would perform surgery in this region) and that I would not probably survive "this". My daughters frantically located a surgeon who agreed to perform the surgery and said get there ASAP. He did indeed perform surgery; the metastasis necessitated removal of my left kidney which was compromised by the neoplasm, transectioning of my duodenum, and an omentectomy. I was released after 5 days and flew home a week later. One month later I received Ifex chemotherapy for four months. There was a metastasis in my liver which the chemo resolved enough to form granulation tissue and some tumor regrowth. Five months later I recived 3D conformal radiation to the tumor bed and adjacent enlarged lymph nodes. One and one half years after the 3D radiation, I remain slightly neutropenic and anemic with abnormal creatinine levels, but I am alive and able to do most of my activities with limitation of fatigue. It has now been 3 years and 2 months since my initial diagnosis. Of course, I know that the outlook for my diagnosis is grim. I remain angry at the delays by the many MD's in acknowledging my symptoms and complaints. When I was in so much pain before my diagnosis, I was even sent home from the ER and accused of abusing pain medication and was given a prescription for 10 Darvocet with the admonition that "your doctor can deal with you next week." I feel that I as a woman was considered inconsequential without value and disposable. Next patient, please!

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Uterine Cancer - Treatments Question: What was the treatment for your uterine cancer?
Uterine Cancer - Risk Factors Question: Do you have any risk factors for uterine cancer? Please share your concerns.
Uterine Cancer - Diagnosis Question: What tests or exams led to a diagnosis of uterine cancer?
Uterine Cancer - Stages Question: At what stage was uterine cancer diagnosed in you, a friend, or relative?
Uterine Cancer - Symptoms Question: What signs and symptoms did you experience with your uterine cancer?

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