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Uterine Cancer- rarely heard of

Posts: 6
Joined: Sep 2006

I just had an opinion. When I first found out that I had Uterine Cancer, I did a lot of research on the subject. I found a lot of really good information, which was very informative.
What I am wondering about is why is this type of cancer hardly ever heard of. You dont know what the symptoms are until you find out that you have it. Women are advised to do monthly breast exams and men to have prostrate exams. I saw an ad on tv about a virus that can cause cervical cancer and the symptoms of colon cancer. I think that this is a wonderful idea to get the word out to protect yourself. I also think that women should know about the warning signs of Uterine cancer as well. I didnt know that anything was wrong. My doctor just dismissed my symptoms as something else. If I knew, I could have insisted on being checked for this. I know that Fran Dresher wrote a book on the subject, and I heard that it went into great detail on the symptoms. I was later told that some of the very small symptoms that I had were listed in her book. I was told by my doctor that Uterine cancer usually hits women going or have gone through menopause. I was a rare case. From what I have seen on this web site, I dont think that was the case.
I am sorry if I sound like I am ranting, and I thank you for "listening".

Posts: 649
Joined: Mar 2003

Hi willsrose,

You are angry now, and you are because you're frustrated. Ambiguous symptoms are one of the reason gynecologic cancers are so hard to diagnose-is it constipation, irritable bowel syndrome, just a backache?

I think uterine cancer is not heard of so much because it is usually discovered in younger women because of excessive bleeding, as mine was. In women past menopause, any bleeding would certainly be a warning sign, but I looked up a bit of information from the Centers for Disease Control:

Gynecologic cancers are diagnosed in female reproductive organs that include the uterus, ovaries, cervix, fallopian tubes, vulva, and vagina. According to the forthcoming United States Cancer Statistics (USCS): 2002 Incidence and Mortality Report (available November 2005)

* More than 71,000 women in the United States were diagnosed with a cancer affecting the reproductive organs.

* More than 27,000 women in the United States died from some form of gynecologic cancer.
Uterine (endometrial) cancer is the most common gynecologic cancer.

* Ovarian cancer is the most deadly gynecologic cancer.

* Cervical cancer was once the leading cause of death for women in the United States; however, during the past four decades, incidence and mortality have declined significantly.

* Other cancers of the female reproductive system are less common. Vulvar cancer, for example, accounts for only 4 percent of cancers in the female reproductive organs. Vaginal cancer accounts for approximately 3 percent of cancers of the female reproductive system.

Before I was diagnosed, I had been into my family doctor's office and my gynecologist's office probably 5 or 6 times each in the months prior, but I won't fault them for their treatment. I did have uterine fibroids (I had them before, and had them surgically removed; I always knew there was a good chance of them coming back).

This is always going to be a problem until there is a true diagnostic test for all of these cancers.

Fran Drescher's book tells about her many trips to different doctors looking for a reason for her symptoms. It's a fairly short book, and you can skip over her personal emotional detail if you like, but they might even help you. She's a very strong-willed woman.

Having a cancer diagnosis is hard enough, but your desire for children has made this extra-hard for you. I read what HeartJourney1 wrote, and think she has made some very good suggestions for you.

You are considered young for having endometrial cancer, I'm sure! I was 48, but was still having regular periods, and all the doctors and nurses kept saying I was so young. If I hadn't been so miserable, I would have been flattered.

I'm so glad you've come to the CSN site and have ranted. It's difficult to unload on those close to you - I know my husband is very concerned, and listens to my complaints, but he made it very clear on our way to my surgery that there wasn't going to be any out-and-out whining about it (not that I was really considering that).

Your stage of 2A was a little higher than mine; did you have further treaments, such as radiation?

I had been laid off my job and was having a tough time looking for another when I was diagnosed. I did find one that I interviewed first for just at the end of my chemo treatments (they found ovarian cancer during my surgery, also), worked for the same people for 3 1/2 years and was just recently laid off, but you know what? I really don't care because I know that I can find another job, and losing a job just isn't the end of the world. I had to work with a really horrid person occasionally at that job, too, and I was able to tolerate them and even stand up to them because I knew I've dealt with far worse things, and they were very small in the scheme of the world.

I hope you'll look into doing something different you've always wanted to try for work. You're certainly young enough to do that.

I'd also suggest finding a support group to join; it's a wonderful thing to be able to talk freely to other women who have had the same experience. I've been humbled by my experience. I was afraid of people crying when I went to my first meeting, and I was the only one who I've ever seen with "waterworks" going there. I was terrified of what was going to happen to me.

To go back to your question about why you don't hear about it much, I think it's because most women are embarassed to talk about their symptoms even after they're diagnosed. I almost always had heavy periods, and know other women who have, also, so I didn't figure that symptom was anything alarming enough to discuss with anyone other than my gynecologist.

Please rant some more, if you'd like. We're listening!

Posts: 649
Joined: Mar 2003

I just re-read your other posting, and read that you did have radiation.

HeartJourney1's picture
Posts: 16
Joined: Jul 2006

Hi Willsrose. I have a ? about your post... do/did you have uterine sarcoma or endometrial adenocarcinoma?? Both are called "uterine cancer", even on some cancer sites; however, uterine sarcoma is generally not caught as early and is much rarer, statistically. They are not the same thing. Enometrial adenocarcinoma (sarcomas are worse, lower survival rates), starts in the lining of the uterus, the endometrial layer, and I believe is an estrogen related cancer (I may not be using the exact right phrase but the idea I'm trying to express is medically sound LOL). The higher and longer the estrogen level, the bigger possibility of this cancer occuring so older women make up a much bigger % so people think it.. "odd"?.. when someone 'young' gets it.

Something like 94% of gynecologic cancers are endometrial, with a large number of cases diagnosed at earlier stages, hence a great chance of 5 yr survival. Many of the national cancer websites talk this month (Sept is Gynecologic Cancer Awareness Month, along with every other thing LOL) about the fact that somewhere around 55% of women fear getting a gyno cancer but almost the same amount had no idea of the symptoms!

There is a ton of info out there but I think we women don't want to research to find out symptoms, risk factors, etc., because just the word "cancer" strikes fear in most people. If we don't talk about it or learn about it, we won't get it.

I know for myself, what I have intellectually learned about various gyno cancers lately is so much more than I even knew there was to know! If that makes any sense... (I blame it on forced menopause but I have no idea what my excuse was before.) I was appalled at first at the lack of knowledge among women, especially the woman I know whose sister is an R.N.!!! She figured once you have no uterus, since it's 'gone', you just skip menopause (I wish).

So I've taken my frustration and anger (and guilt? Why should other women know what I didn't want to look at myself?) and I've begun to do what I can in my corner of the world to educate. I used this 'awareness month' to put out a memo to every employee with information, some direction to find more out and encouragement to have any and all unusual symptoms checked out when they show up... RIGHT in the beginning!

So what about uterine sarcoma? I don't know why it's so much rarer. I don't think the medical community has too many clues either. But I think it's a blessing that the most common is the much more curable. I don't mean that it's more curable BECAUSE it's more common so they've had a lot more opportunity to get it to the more curable point... I mean, maybe it's a way to give us a break against against the odds, if you know what I mean.

Frustration is one of the many emotional fall-outs of cancer. Hang in there. Be patient with yourself, and kind...pamper you. And keep posting.

Be blessed.

Posts: 6
Joined: Sep 2006

Thank you for getting back to me. I do have my good days and my bad. This week has been pretty bad. I have been pretty emotional. Some days I just dont know what is wrong with me, and I have a hard time controling it. I dont fully understand why I am this way, but I am trying. My husband and the rest of my family have tried to be patient, but they dont fully understand and I get some strange looks. Some days I feel that is they dont see the scars or bandages, then you are ok. Emotions are a tough thing to contol.
I have started college classes to hopefully make me feel better about myself. So far it is working. I start a workstudy program. This will be the hard one, at an elementary school helping the really young kids (k and 1st grade) in the math and reading lab. I am exited and very nervous about how I am going to handle my emotions. I know these kids will be around my 5 year old nephews age. I have babysat him from the time he was 3 months old. He started school this month and I havent seen him since then. I miss that little guy so much. Mom works and when she has the weekend off, it is her time with him.
With my bundle of emotions, I am a mess.
My doctor said that some women go through this menopause with no symptoms at all, I am afraid that I am not one of them!
I hope I can somewhat answer what type of Uterine cancer I had. I have a letter from my doctor. I had Stage 2A, G1 Endometrial Cancer. I had a paper that said what this was, but I misplaced it. I do know that this was suppose to be the easiest to treat. HA, like saying you have an easy to treat cancer is going to make you feel any better. Cancer is Cancer and it scared me to death. It still does. I have had 3 Uncles die from various forms of cancer. It seems that it runs in my family.
Thank you so much for replying to my message.

ambeelight02's picture
Posts: 1
Joined: Sep 2006

Hello! I have been recently diagnosed with Uterine Sarcoma but by the time that a doctor actually caught it and did some test it is now Stage 4B.I am only 22 years old with no children but really want a few.I have been having heavy bleeding and painful cramps for about three years ongoing and went to about 5 doctors until someone finally didnt say "get on birth control,its just hormones and the bc will help". but nothing ever helped so i finally demanded taht a new doc run some tests then they thought that there was no way b/c i'm so young but three oncologists proved it.I know what you all are going through.I would love to have some others to talk to at times such as yourselves.Please tell me your stories and what goes thru your minds at times.i am currently undergoing aggressive chemo treatments four days a week that have a huge chance of not working but its worth it to me.Please e-mail me at ambeelight02@yahoo.com.

Posts: 2
Joined: Oct 2006

Hello to all. I'm new to the forum and have been trying to find people who are going through the same as me. I am 46, and recently had TAH/BSO for endometrial adenocarcinoma. I am a nurse/midwife, so have more than a working knowledge of the female reproductive system. So about 18 months ago when I had cramping pains without having a period I thought it might be adhesions(had Caesarean section 1989). Scans showed normal uterus, and so no treatment needed. About 6 months later my periods started to get a bit heavier, but I thought this was associated with my age. But then I started to bleed very slightly(sometimes only a spot) in between periods. I knew abnormal bleeding in menopausal women might indicate cancer, but since I was still having periods knew it was unlikely for me.I had a hysteroscopy which showed polyps, and had a biopsy done and follow up appointment to have polyps removed. My hospital appointments were at the hospital where I work, so I know all the gynaecologists. On the day of my polyp removal, while I was actually in the clinic, my results came back. The consultant, who I've known for 20 years had the unfortunate job of telling me that I had cancer. I couldn't decide at this stage if I felt more sorry for her or myself. But I remember her saying"if you nave to get cancer this isn't a bad one to get" That phrase has seen me through some of the most worrying days of my life.
I got an appointment with an oncologist I had known for 13 years, and have had great care. My cancer was classed as grade 1, stage 1c(54% infiltration) Lymph nodes-20 of them clear of disease(mri confirmed this, but double check) I felt I would be advised to have radiotherapy, but had made up my mind I would refuse if infiltration was 60% or less. Then when they decided I din't need it, I thought maybe I should have had it. No pleasing us is there? So the surgery and recovery were good. The problem is now the expectation of further spread. I feel like I am on sentry duty 24/7, in case a symptom goes unnoticed. There is a very fine line between common sense and paranoia.lol
Despite my occupation I have very little experience of cancer survivors, and I'm ashamed to say, I still thought everyone with cancer diagnosis died, regardless of the treatment. Until of course it happened to me. Now I have to tell myself, survival rates are as high as 90% so there is a lot to be grateful for. Next month is my first check up, since my six week post op check. The oncologist wants to see me 4 monthly for a while, then6 monthly, and finally yearly until 10 years.At least he's expecting me to be round for a while.
Hope we all are.

Posts: 1
Joined: Oct 2006

I am 32 and have the rare cancer also and it was found on accident

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