Patient Comments: Uterine Cancer - Describe Your Experience


Please describe your experience with uterine cancer. Submit Your Comment

Comment from: Marian, 55-64 Female (Patient) Published: February 01

I'm 58 and in menopause. The past two years I've had mild spotting once a year, which my doctor attributed to excess estrogen building up a lining since I'm overweight. Biopsy was done, a polyp removed, and all normal in 2018. This month I started a regular period followed by spotting. I went to a new obstetrician today. Everything looks and feels normal, but she scheduled an ultrasound and then I'll have a D and C. My grandmother died from uterine cancer, so I am a bit scared, but would rather know what is going on.

Comment from: Lola, 45-54 Female (Patient) Published: January 22

I was having heavy vaginal discharge. My gynecologist said it was due to cervical polyps. She removed the polyps and also took some samples of my endometrium. The endometrial samples came back positive for cancer. The polyps were benign. When my oncologist examined me, she said I had discharge due to the uterine cancer. I had a hysterectomy 2 weeks later. I was stage 1A, grade 1. I was lucky. I'd never heard of discharge as a sign of cancer so this surprised me a lot, and I want others to know my experience.

Comment from: Bonnie, 55-64 Female (Patient) Published: January 09

I’ve had uterine cancer almost 5 years ago. I had a complete hysterectomy due to cancer. I’ve been spotting for almost two weeks. I think I should call my gyno-oncologist. I’ve also had breast cancer at the same time.

Comment from: Brenda, 45-54 Female (Patient) Published: April 23

I won the fight with uterine cancer over 10 years ago. I lost my cervix and uterus was full of tumors but they caught them in time. They are back! The place where my cervix was is compacted again and the doctor can feel the tumors when pushing on the outer area and the pain is horrible! I'm going through multiple tests starting tomorrow but surgery isn't until May 15! I've raised my 3 kids alone, am a retired nurse due to back injury, with radical type 1 diabetes due to cut spinal cord, in wheelchair part time, and now I've got to fight my last fight! FYI I pay for some medical Glucerna 10 cases per month plus potassium water for my heart, needed more due to cancer. My potassium and blood sugar levels are a roller coaster so yep, welcome to being disabled! I lost 65 lb. in 5 months so far. So ladies, get your Pap test done, you don't want to get this! I got it in between my yearly test!

Comment from: Sharon79, 35-44 Female (Patient) Published: July 11

Reading the stories and symptoms on this website prompted me to see my obstetrician about the brown and red spotting in between periods I had been having for months. I am 39 and thin and don't fit the profile for uterine cancer. My obstetrician after some pushing on my part did an ultrasound and then D and C. The D and C came back negative, but the ultrasound showed a polyp. I was then scheduled for a hysteroscopy where they removed the polyp and did a more thorough D and C. The polyp showed no signs of cancer, but the tissue samples from the D and C indicated that I had grade 1 endometrial cancer. I am now scheduled to have a hysterectomy in three weeks. For all of you ladies googling spotting in between periods, just know that it's not normal, it could be cancer, and warrants a trip to the doctor.

Comment from: Dafad123, 45-54 Female (Patient) Published: April 01

I have been told I have a thick uterine wall and have a polyp that needs to be removed, then they will send it to pathology to see if I have uterine cancer. They can’t get me in until two months for the surgery. My mom’s two sisters passed away young, one at 46 from cervical cancer and the other at 48 from colon cancer. I am 45, a bit worrying I wish the biopsy was sooner.

Comment from: Anne, 45-54 Female (Patient) Published: December 11

I was diagnosed with a 9 mm fibroid tumor in my uterus. I have had it for 5 years. Now it is protruding out of my lower stomach. It feels like it is moving and keeps me up with pain at night as well as awake. I am worried that it might be uterine cancer.

Comment from: Tena, 55-64 Female (Patient) Published: December 21

On Thanksgiving 2016 I saw two very small spots of blood on my underwear. After that I had brown (like old blood) smears when I used tissue. Since it was the holiday weekend there wasn't much I could do but first thing Monday I tried to get in to my doctor and couldn't so I went to the emergency room. They did an ultrasound (internal and external) and told me it most likely was uterine cancer because my endometrial lining was 15 mm thick (oncologist says it should be around 4mm). I got an appointment the next Tuesday with a gynecologist who performed a D and C, and hysteroscopy. The following Thursday the biopsy came back as endometrial cancer, endometrioid, grade 2. I was referred to a gynecologist/oncologist/surgeon. Now I am scheduled to have a da Vinci robotic hysterectomy with removal of lymph nodes on Thursday, December 22. The doctor says that I have every reason to believe that this is very early stage so I am trying to remain calm. The weird thing is that I seem to have had symptoms that mimic PMS (premenstrual syndrome)! Very irritable, crying for no reason, acne breakout, and cramping. Very strange.


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Comment from: Snehal gupta, 45-54 Female (Caregiver) Published: November 22

My mother is 46 year old. My mom was having bleeding for 15 days after this. Same thing happened after 2 months later, and that time it was white bleeding. After this we checked from a doctor and she was diagnosed with uterine cancer. After this we did MRI to check the cancer stage and found it was early stage. After this our doctor did surgery and removed the uterus. Now I am worrying about danger of cancer after removal of the uterus.

Comment from: Pat, 65-74 Female (Patient) Published: October 12

At 64 I was diagnosed with hyperplasia with atypia by D and C. Six weeks later I had a hysterectomy, along with tubes, cervix and ovaries and appendix. It was stage 1 A. My only symptoms of uterine cancer were 2 mm spots of blood. It is now three years later and right now I am fine. My gynecologist took my symptoms seriously and so it was early. I knew post-menopausal bleeding is never good. It should never be ignored. I am grateful for every day. So if you think something is wrong get the doctor to do the tests.

Comment from: Jan, 55-64 Female (Patient) Published: May 17

I am a 60 year old, overweight, single woman. I have had no children, started menstruating at age 10, quit menstruating at age 50. I did not have any abnormal bleeding. I was walking my dog and experienced a sudden, sharp, stabbing pain in the left lower quadrant of my abdomen. It lasted about 10 minutes, then was sore for 24 hours, and then went away. Nothing more until it happened again one month later. Same scenario. I saw my doctor and explained what happened. She sent me for a transvaginal ultrasound. It showed a polyp. I had a D and C, hysteroscopy and polypectomy. Two days later my obstetrician/gynecologist called to tell me I had grade 1, stage 1 uterine cancer. The polyp was grade 1 adenocarcinoma. I was referred to a surgeon specializing in female reproductive cancer. I then had a hysterectomy, removal of ovaries and tubes, and sentinel lymph node biopsy. The lymph nodes were negative. The tissue showed one very small polyp with abnormal cells. Therefore, the hysterectomy is my cure. I do not need any radiation or further treatment of any kind. I am so thankful that I paid attention to the pain that I had and that my doctor is very conscientious about following up on symptoms. Be sure to listen to your body and follow up!

Comment from: Lexy B, 35-44 Female (Patient) Published: October 21

I was diagnosed with endometrial cancer stage 1 on 10 to 15. I had been bleeding for over a year. My family doctor said it was fibroids and they would go away. She said she has them and it stopped on its own. I had a Pap smear test and everything came back normal. So over a year later I am still bleeding, heavily. My husband changed jobs so the new insurance I didn't need a referral. I went directly to a specialist at woman's health. Within a week I had the results. I go in tomorrow to find out what he is going to do. Wish me luck.

Comment from: willieL, 75 or over (Patient) Published: January 05

I was just diagnosed with uterine cancer 2 weeks ago. My gynecologist told me it is very low grade. Because of the holidays I will not see a gynecologist/oncologist until January 13, 2015. I do not know what to expect, other then I need a hysterectomy. Perhaps I will need more tests first. Because of my age I wonder if I will be at a greater risk of the cancer spreading. I also have diabetes and a heart condition. I have to admit I am worried.

Comment from: Annamae, 55-64 Female (Patient) Published: October 22

I am 63 years old. I went through menopause at 50 to 52. I never had any bleeding, spotting, discharge, etc., yet a PET scan (for growing lung nodules) showed a uterine problem which prompted a biopsy. I was told 3 days ago I have high grade endometrial adenocarcinoma - grade 3. I am totally shocked and still in disbelief. I saw my gynecologist 3 months ago for yearly exam. No problems, yet it's a grade 3. Total hysterectomy to be scheduled next week with radiation. I would love to hear of others with grade 3, how long ago, how much radiation and any other treatment.

Comment from: Cathy, 55-64 Female (Patient) Published: January 27

I had spotting in July, Pap test was inconclusive and told not to worry. I wouldn't take inconclusive as a diagnosis. Months went by with two other tests that were inconclusive and still told not to worry. I went for D&C and endometrial cancer was found. I went to an oncologist for second opinion and had surgery in December. Prognosis is excellent. Never accept "don't worry as a diagnosis!" We have to be our own advocate regarding our healthcare and ask questions. We know when something is "just not right".

Comment from: mary, 45-54 Female (Patient) Published: January 23

I am a 49 years old woman with a diagnosed uterus cancer grade 1, 2 days ago and my doctor said I should have total hysterectomy the next week and after that according to pathology he will decide about other treatment. My older sister had the same problem 5 years ago and was treated with surgery and radiotherapy and every 6 months she is checked for reoccurring but she has not any sign. I am worried now and I can’t do anything but I try to be positive and change my diet (more vegetarian) and exercise.

Comment from: Silvia gaona, 35-44 Female (Patient) Published: September 26

I am 39, and about a month-and-a-half ago I started getting really sick, throwing up. I couldn't eat, was very tired and weak and had headaches and dizziness. I can't keep anything down and they're saying that I have uterine cancer but other people don't have those symptoms. But it is just a month-and-a-half, I hope it is early enough to treat.

Comment from: Mc, 35-44 Female (Patient) Published: June 20

I have been bleeding heavy for last 5 months. The gynecologist has done a biopsy 1 week ago, no results back yet. I have bad door and severe pain in my stomach. I don't know if it is uterine cancer or not yet. I am getting weak every day. I don’t know what else to do.

Comment from: concernedgirl09, 25-34 Female (Patient) Published: March 22

I am 27 (about to be 28) and over the past two years my periods have been crazy! I bleed for 3 months at a time with no breaks, and for weeks at a time it is very heavy. Passing big clots and soaking through a pad and a super plus tampon every 40 minutes. I have been diagnosed with PCOS (polycystic ovary syndrome) when I was 19 years old and I am pretty sure I have endometriosis. The pain that I feel every single day is unbearable. I have been to countless doctor visits with no answers and feeling brushed off to the side. I never had the concern for cancer because the doctors never seemed to be concerned. They just wanted to fix the problem with birth control. Finally I found a gynecologist that actually listened to me and she seemed to be concerned when I told her my symptoms and my family health history. My mother was diagnosed at age 32 with endometrial cancer, and my 27 year old cousin has ovarian cancer. So she suggested that I have a punch cervix biopsy and wants to start me on the Mirena. I am terrified to get the results backs. But I have heard so many stories where the biopsy doesn't show cancer cells, only the D and C. I wonder if I should ask her for a D and C. I don't know where to go from here!

Comment from: jeramirez89, 25-34 Female (Patient) Published: December 01

I was diagnosed with stage 3 uterine cancer. After going through a complete hysterectomy and having a port placed, I've been going through chemotherapy, six sessions, with the last one to happen in January.

Comment from: Mommajo3, 25-34 Female (Patient) Published: July 19

I am 29 years old, not on any birth control. I have 3 children, youngest is 1 and last Pap was after her birth, and it was normal. About two months ago when I had bowel movement I had bright red vaginal bleeding, approximately 1 tsp. Then it stopped, no spotting, no pain, and no other symptoms. I just assumed I was straining and dismissed it. It's happened about 4 times since then, at random. It happens at different times in my cycle and it's not from constipation. I mentioned it to the doctor today and her demeanor changed and she looked concerned and said I need to come in for pelvic exam. Due to commitments with work I can't get an appointment for at least two weeks but now I'm nervous about uterine cancer. I wonder if the doctor actually can tell anything from a vaginal exam or if lab work and ultrasound are needed for answers.

Comment from: dalw, 45-54 Female (Patient) Published: November 05

I just got a call that my uterine cancer is grade 1B. I am 10 day post-surgery and I had a difficult surgery. My hemoglobin went from 144 to 78 because I had internal bleeding post-surgery and I was being prepared for more surgery 3 days post-surgery but my hemoglobin finally stabilized. Anyway, I just got my staples out and I guess my recovery will be a wee bit slower than most.

Comment from: Traceylee, 35-44 Female (Patient) Published: March 26

I am 42 years old and was diagnosed with uterine cancer in February of 2009, which was discovered while seeing a fertility specialist to get pregnant. I already have three children, but I am in a relationship with a man who has not had children. I am told it is grade 1, which has mature and slow-growing cells. So, there is little risk in putting off having the hysterectomy if we wish to pursue trying to conceive. I am awaiting an MRI and CT scan that may help with the decision-making process. What a rollercoaster of emotions!

Comment from: msanders5481, 25-34 Female (Patient) Published: March 05

I am 27 years old. My only risk factors are that I am a white female. I was diagnosed with uterine cancer on 06/06/07. I started chemo that day and will have my last treatment this month. I also had a complete hysterectomy, which is what the doctor said was best for long-term remission. I just keep my fingers crossed and pray and thank God every day. My best advice is eat right, exercise, find something that relaxes you, and maintain a good attitude; it will help you heal much better, and it feels better being cheerful instead of dwelling on “why me?” Remember, who would you really wish this on? Keep in mind, "What doesn't destroy me only makes me stronger!"

Comment from: NE female, 45-54 Female (Patient) Published: February 24

I am 49 years old and was diagnosed this summer with endometrial cancer. I sought an evaluation because I had been bleeding for three weeks. I had a total hysterectomy and the pathology report indicated that it was contained in the endometrium. It took a good five to seven weeks to rest before I returned to work. No further treatment (chemo/radiation) was needed. I just went back for my four-month check-up and they thought I was doing fine. I feel fortunate to have the positive prognosis. I am thinking of all of you who are dealing with the same diagnosis. May you have the support and good medical care you need. I continue to worry about the possibility of a reoccurrence down the road, but I hope that it is over.

Comment from: laura9, 45-54 Female (Patient) Published: February 24

I was diagnosed with endometrial cancer Dec. 28, 2007. I was 45 years old. I had a total hysterectomy on Jan. 14, 2008 followed by 28 external radiation treatments and two internal treatments. My cancer was stage I, grade III. What bothered me is that I always had yearly pap smears and had one in April of 2007 that told my doctor I was experiencing heavier bleeding than usual. They checked me for anemia, and that was it. I took it upon myself to get a second opinion a few months later and thankfully this doctor did a transvaginal ultrasound and found the sarcoma. I thought I was starting menopause! Boy was I wrong! But I was also very lucky! I’ve been cancer-free for one year, and my prognosis is very good.

Comment from: Anonymous, 45-54 Female (Patient) Published: November 19

My mom was diagnosed with uterine cancer when she was 37. She underwent a complete hysterectomy. We celebrated her 70th birthday this year. The only risk factor she had was being Caucasian. You truly never know. My sister is 37 and I am 48; we have both had pre-cancerous pap smears and both have had elective hysterectomies.

Published: July 28

I have been misdiagnosed with cervical cancer. After meeting with my oncologist and having exploratory surgery it is now diagnosed as Uterine Cancer, Stomach and going into part of my lymphatic system. I am in stage IV and my Doctor told me this is a very aggressive cancer, and if I do not choose treatment I have only a month to live. If the chemo works, I have surgery in 3 mos. and possibly 3-5 years. I don't get how I could have only had it for about a month? I eat healthy and I am only 46. All articles states the age for this type of cancer is 55-70 year olds. This all started just on July 10th when my pap smear came back from pathologist as positive for cervical cancer and it's not cervical. I feel like a lab rat, and I'm frightened.

Published: July 23

I was diagnosed with uterine sarcoma in June after first undergoing a D&C to remove a polyp. I was having irregular and very heavy bleeding. My gynecologist assured me the polyp was nothing to worry about. After removal and testing though, it came back as malignant. He immediately scheduled an appointment for me with a gynecological oncologist. I thank him every day for that. I had a hysterectomy the next week. The polyp was contained. I did undergo 5 weeks of radiation therapy. So far, so good. On my last visit in April of this year, his nurse told me that I was a miracle. Normally this type will reoccur. It has been four years now and I am doing great. I still worry about it but I am just thankful for everyday that I am here. Janna

Published: July 18

I was diagnosed with leiomyosarcoma in May 2008. I initially had bladder problems, so I had an ultrasound that found a large fibroid. The gynecologist wanted to monitor it for three months before taking further action. However, the heavy bleeding and pain became too much. I was admitted to the hospital and had an exploratory operation. The samples were sent off for analysis and a diagnosis of uterine cancer was confirmed. I had a total hysterectomy a couple of weeks later, taking out the ovaries, and cervix too. As the tumor had “split,” the doctor recommended radiotheraphy to kill off any escaped cells. I have recovered well from the hysterectomy and am now awaiting further treatment. I am age 49 and have had children so losing these organs was not a problem physically, but emotionally it has been a challenge.

Comment from: Pamela, 55-64 Female (Patient) Published: June 14

I don't know if I have uterine cancer. But I have bleeding when I void. Also I have pain below my navel.

Comment from: Tricia, 55-64 Female (Patient) Published: August 30

I'm 64 years old. A couple of years ago, they did a D and C due to some bleeding. Tonight it happened again when wiping. First time nothing was found. I am concerned about uterine cancer.

Comment from: June, 45-54 Female (Patient) Published: April 14

I have just met with my gynecologist after having been on the waiting list for 27 months. She indicated my symptoms don't match my cysts, fibroids or menopause and requested she do a biopsy to which I declined having heard the horror stories. I'm now booked in and with two weeks for surgery, a D and C with a biopsy. I have had many symptoms over the 17 months, chronic fatigue, bleeding, having shedding of the lining of my womb, and having a ferritin count of 7. I have a bloated stomach, heartburn, and weight gain and was under the misconception cancer would cause weight loss and make you frail. I'm hoping I do not have cancer, I have a five year old and am a single parent, the last thing I need is illness of any kind.

Comment from: Cy, 55-64 Female (Patient) Published: February 20

I am 63 and was just diagnosed with uterine cancer. This was the result of vaginal bleeding that was checked out. I am stage I. I will have a robotic hysterectomy in two weeks. I am not looking forward to this, but I don"t need my uterus, etc. any more. I will not have chemotherapy or radiation because it is too destructive. I will have a natural cure (in case it has moved to another part of my body).

Comment from: Margaret, 55-64 Female (Patient) Published: March 23

I was diagnosed with endometrial adenocarcinoma last July and had a radical hysterectomy. It was a grade 1, stage 1B. I had the surgery on Friday July 11th and was home again on Monday, July 14. I was not high-risk and always ate well. I went to the gym three or four times a week, so it was all a tremendous shock. I have been fine ever since, but of course, I do worry about recurrence. Sometimes things get on top of me, but I try not to worry. My advice is to eat well, exercise well, and try not to think about it. And always report any symptoms as soon as they appear.

Comment from: Female (Patient) Published: March 23

I am 55 years old, and I was just diagnosed with uterine cancer. I will go to the oncologist in April for scheduling of a total hysterectomy and whatever treatments are prescribed. I am scared to death, but I need to get things taken care of ASAP. My diagnosis was one year after my oldest daughter's cervical cancer. Wow, what a blow, but we have each other for support. God bless all women who go through this mess.

Comment from: marywel, 55-64 Female (Patient) Published: March 05

The uterine biopsy showed atypical cells. I had two done in July and August. I also have metabolic syndrome, PCOS, and a huge hernia among other maladies. I was sent for a CT scan and ultrasound along with blood work and chest X-ray. The CT scan results showed nothing remarkable except it actually said "history of uterine cancer," which jolted me and obviously was more severe than "atypical cells." I had surgery (hysterectomy and hernia repair) on Nov. 26 -- everything was removed. Pathology showed only two small areas of pre-cancerous cells, so I was very fortunate. The incision looked good, they said, and I was able to urinate and move my bowels before leaving the hospital. My main discomfort now seems to be something internal at the bottom of my abdomen, like a burning sticking awfully intense pain that feels as if I'm being torn apart as someone pours grit and salt into the open wound. I'm told I'm healing well and there are no gaps in the incisions. Staples were removed this past Thursday. I still need help getting in and out of bed, but for the most part, I'm moving pretty well on my own. Hopefully, this severe burning pain will stop soon. I'm 57, so there apparently is no need for HRT.

Comment from: KCChession, 35-44 Female (Patient) Published: March 05

I am 36 years old. In June of 2008, my OBGYN found a polyp on my cervix. After doing additional scans, he also found one on my uterus. In October of 2008, he did bladder surgery and removed the polyps for biopsy. They were OK; however, the cells that were scraped around the polyps came back as pre-cancerous. I was advised that I did not have cancer but had two options: a radical D&C (which technically had already been done) or a partial hysterectomy. (Because he did not feel it was cancer, and because of my age, my ovaries were left to prevent early menopause.) Since I have a history of cancer (thyroid cancer in 2006), I did not hesitate for the hysterectomy, which was performed in November of 2008. Even though we have struggled to get pregnant for a total of about eight years, we did have children. Even after the surgery, I was told there did not appear to be cancer. Well, it was. The biopsy confirmed it. Luckily, it was contained. Recently, I had a third surgery on Dec. 30, 2008 to remove my ovaries, tubes, and lymph nodes. I am feeling OK but do not have results yet for the lymph-node testing. Additional treatment may be needed. I just thank God every day that I did not hesitate to have the hysterectomy because if I had waited in the hopes of having another baby, it may have been too late.

Comment from: Skater1, 55-64 Female (Patient) Published: December 08

I am 60 and home recovering from a complete hysterectomy from uterine cancer. The surgeon wants me to receive Taxol and do radiation for possible escaped cancer cells since my tumor in the uterus was Grade 3 but contained. I am presently researching options to see if all this is necessary for me to gain my five-year mark.

Comment from: Ember, 19-24 Female (Patient) Published: December 08

I was recently diagnosed with uterine cancer, and I’m only 19 years old. My aunt just died from this same cancer three months after being diagnosed. Fortunately, my cancer was caught early. I am going to have surgery soon, and hopefully, I will get better.

Comment from: Reass, 35-44 Female (Patient) Published: September 29

In 2005, I found out I had uterine cancer. I did chemo for six months. My cancer grew larger. I had a hysterectomy performed. It’s now 2008, and I'm still cancer-free. I think fighting cancer is doing as your doctor says, but a whole lot more. It’s being healthy (exercise and diet). It’s also spiritual (some type of religion), being stress-free (try yoga, or a hobby). It’s also good mental health. I believe in positive thinking and surrounding yourself with positive friends and family.

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!

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.

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.

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.

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.

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!

Comment from: mhluvbug, 25-34 Female (Patient) Published: September 29

I was diagnosed with endometrial cancer. I'm 34 years old and have been married for two years now, but I have no children. I am so scared. My doctor wants me to get a total hysterectomy, but I want to have children.