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"Too Young for Endometrial Cancer"? "Too Young for Endometrial Cancer"?

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  #1  
Unread 10-21-2002, 08:35 PM
"Too Young for Endometrial Cancer"?

Hi,

I's been almost a couple of years since I checked out this message board, shortly after my surgery and radiation for Stage III endometrial cancer during the summer of 2000. When diagnosed, I was almost 41. The oncologist seemed to think I was amazingly young to end up with this, and it reached Stage III because my gynecologist had specifically told me that at my age, cancer wasn't a concern!

So - I was surprised to check out this board today and see that apparently there are a number of you in your early 40s who ended up with endometrial cancer. Also, Fran Drescher recently wrote a book about HER experience with it, at around 40. What's going on here?

I would be really interested in hearing from anyone out there with an endometrial CA diagnosis who got it PRIOR to menopause. How did you end up getting a diagnosis - what problems were you having that led to a biopsy or D&C? I'm curious esp. given that mine went undiagnosed for longer than it should have....

Thanks!

Lily
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  #2  
Unread 10-22-2002, 06:44 AM
"Too Young for Endometrial Cancer"?

Lilly
I sent you a private message. I also am very interested in hearing from others that have been diagnosed with this. It seems like most of us were initially given the "it's normal for your age, hormonal, perimenopause thing" from the drs.....thus postponing our diagnosis. My goodness.....look at Fran D how long she went waiting for some help.. All the talk shows seem to be talking and talking about breast cancer, which is good and more research needs to be done in that area, but I think some of these other female cancers should get some attention. I read somewhere that endo c is the most common form of gyn cancer, but the least researched. Is that because in the past it primarily only effected older woman....????? What is considered old now????I sure don't consider anyone younger than 70 geriatric....and all that I have talked to are under 60....too young!! If so, that is terrible....and now with the seemingly increase in younger and younger women with it. What is going on....I read on one site there has been some theory that hormones that were given to dairy and beef livestock have a possible link to the increase in endo c.....something about that from around the 40's through 72' livestock was given DES and that could have caused the increase in younger women now.
  #3  
Unread 10-22-2002, 11:45 AM
pre menopausal endo cancer too

Hi Lily & Chris-

Yep... I was told 2 years ago that there was absolutely NO CHANCE I could have cancer!!!! Same old, same old here too. The perimenopause thing and that I had a fibroid that was causing the pain and bleeding. Basically, my gyn at the time said I should get a hyster because the fibroid was in such a place that they wouldn't be able to get it. I had just read the book by Dr. Lee (What Your Dr. Didn't Tell You About PreMenopause) and thought that maybe I should try to use progesterone cream to see if that would keep the fibroid at bay until menopause (I was 46 at the time), IF, that is, there was no chance it could be cancer. I specifically asked the gyn, "is there any chance this could be cancer?" and she said absolutely not. I asked about a D & C and she said that wouldn't do anything to help the bleeding. That was what we were trying to remedy - since cancer was not an option. My gyn did think I'd be back within 6 mths. for a hyster, due to the bleeding.

Well... I tried the progesterone cream and it seemed to help at first. Then my gyn (used her for 15 yrs.) decided to leave the area and become a country dr. A year passed and I had an appt. with another gyn, which took months to get, and right before the appt., their office called to say they were no longer with the insurance plan I had. I put off going to anyone else until things got scary. I thought I was bleeding to death one month and it turned out I almost did! Finally, after going to 2 more drs., someone suggested a D & C and the rest is history!!!!!!

I am so happy that they caught this in time. Now I have to survive the non-hormone path - still trying to figure out what to take, etc. Can't take hormones, but Onc. says I can take black cohosh and evn primrose oil. I'd like to hear what you all are doing.

Ginny
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  #4  
Unread 10-22-2002, 02:21 PM
"Too Young for Endometrial Cancer"?

Ginny and Chris,

Thanks for your stories (and the private message, Chris - I read that first and wrote back). What stage did you guys reach? Did you have radiation?

Ginny, your story sounds REALLY familiar! Beginning in 1996 I had periods only every 6 months, and then when I got one it was HUGE; I also had a fibroid. I too specifically asked my doctor: should I have a biopsy? She said at my age, she wasn't concerned - and unfortunately I trusted her. Mine spread to a lymph node before it was diagnosed, so now I live with the anxiety of its return. Although it's been over two years now, so I feel a little better as time passes.

Chris - your comments about breast cancer - I've had exactly the same thoughts! I would go so far as to say that sometimes I feel resentful of all the attention to it; this is breast cancer awareness month, and I went to a fundraiser for it, and inside I was kind of thinking "what about ME?" It's not that I'm not sympathetic to breast cancer victims - ABSOLUTELY not, heck, I could be one some day - but I'm a little bitter that doctors like mine, and both of yours, are SO uninformed, apparently, about endo CA.

I too have thought about whether the use of hormones in livestock and chicken could be messing up our cycles and causing more cases of this. Because being anovulatory is at the heart of it - it causes the uterine lining to build up over time, creating hyperplasia, then cancer. Another thing: were either of you on SSRIs before your diagnosis? I was on Prozac for yearly 10 years, and as soon as I started taking it, I noticed an effect on my cycles. Now, I've read that some reasearch has found a connection between SSRIs and cancer! So I'm trying to get off it, but it's not exactly the best time....

Possibly because of the Prozac, I haven't had problems with hot flashes even without HRT; my main issue is lack of libido, and I'm probably about to try testosterone (gotten good advice at the Hormone Jungle thread).

If there are others out there like us, I'd love to hear from you!

Lily
  #5  
Unread 10-22-2002, 02:41 PM
"Too Young for Endometrial Cancer"?

Gingin
What stage and grade was your endo c. ? Did you require any additional treatment? Chris
  #6  
Unread 10-22-2002, 03:50 PM
"Too Young for Endometrial Cancer"?

Hello Girls I didnt have endo cancer but if you look under the stickie post at the top of CC there is a thread called 'our diagnosis' which is a list of all the cancers and the women who have had them.

I know that Valentina had endo cancer and she was very , very young ... mid 30's I think.

All these ladies are so willing to be contacted if any of you want to 'chat' to them. Best of luck with it all x x x
  #7  
Unread 10-22-2002, 07:21 PM
Reply to Lily and Chris and thanks for info to Robyn

Lily,

The problem with me wasn't that I'd not have a period for awhile and THEN hemmorage, it seemed like I was constantly bleeding and then I would hemmorage like every 4th month to boot! When I look back on this, I can't believe I didn't think something was wrong. I just kept telling myself that I had to stick it out till menopause and the "fibroid" would shrink and I'd be home free. Everything I read said that this was pretty normal, of course what is "normal" for one person isn't normal for another. It's too subjective - I had always had heavy periods, so for me, I felt this flooding was just perimenopause, which was what the drs. told me too. I hate to say this, but I think there's going to be alot more of this type of cancer popping up in the population. I don't want to sound like "why me?" but I've always been very concerned about my health and have worked out with weights and danced for the last 21 years. I feel I'm a typical baby-boomer and the ONLY health problems I've ever had were gyn. oriented.

In answer to your questions about SSRI's, no, I've never taken any so I know that couldn't have contributed to my cancer.

Chris - I don't know the stage and grade of my cancer! I looked on the path report after your post and it doesn't say. It just says:
Pre Operative Dx: Endometrial adenocarcinoma
Post Operative Dx: Same

The operative report (before path came back) it says:
Preoperative Diag: Endometiral Cancer
Postoperative Diag: Suspected Stage I-D endometrial cancer

I had a tumor that was 40% into the lining, but the tumor was found to be "atypical polypoid adenomyoma of low malignant potential" which isn't quite malignant, I believe.

My onc. says I don't need treatment at all, I have to have a CAT scan in 6 mths and continue with him for 2 yrs. No HRT, but I can take black cohosh and evn primrose oil.

Are any of you taking any supplements?

Also, I was just informed today by onc (my 6 wk checkup) that I will probably have to take some kind of low estrogen cream for vaginal dryness, when that happens. Are any of you doing this and if not, what are you using?

Thanks for any info! Take care and nice corresponding with you! Ginny
  #8  
Unread 10-22-2002, 08:07 PM
"Too Young for Endometrial Cancer"?

Robyn - thanks, that's probably a good idea.

Ginger - well, that's a great diagnosis, sounds like. I'm not sure what it means that they call it cancer, and yet it has "low malignant potential" - maybe it wasn't quite cancer at all? Hmm.

I definitely suspect that something in our environment, or horomones in food or something may be contributing. I mean, look at how young girls are getting their periods earlier - why couldn't whatever's causing that also be causing problems for some women in the perimenopause stage? It's reassuring that you weren't on any SSRIs leading up to this; I HAVE read of a connection, but I don't think it's yet strongly supported in the literature.

Lily
  #9  
Unread 10-22-2002, 08:46 PM
"Too Young for Endometrial Cancer"?

Well, I'm another one in the group of those too young for endo ca--46 when I was diagnosed this past May. I had been having heavy, painful and very erratic periods for a while. I had one that lasted the entire length of the winter olympics (nearly 3 weeks), and after that, made an appointment with my primary care doc. She said probably just perimenopuase, and sent me off for a vaginal ultrasound. That showed a thickening in the uterine wall; she said probably fibroids, and gave me a prescription for the pain. Even with the pain meds, I'd wake up in so much pain during the night I'd be in tears, and it was really starting to affect my life, so I persisted that something more was needed. She referred me to a gyn practice, and I took an appointment with the first doctor I could get, and will be forever thankful that I did.

My new gyn did an endo biopsy at my first appointment; that came back cancer free, and based on that result, we discussed possible treatments--birth control pill, fibroid removal, ablation, and hyster--with the bcp being the easiest thing to give a try. I was very hesitant about that, since I had a close friend who had recently ended up in the hospital for a week with blood clots after taking the bcp for fibroids. My gyn said that although it was a risk, it was a small one. Even so, since I was so concerned, he recommended outpatient surgery to remove the fibroids (he had done another ultrasound, this time with saline solution to open the uterus, and had found small fibroids, as well as something that looked like a small polyp). Told me the surgery was not that bad, I'd miss a couple days of work, and we scheduled it for a month later, after I returned from a vacation. Best decision I could have made! I count my blessings that I knew the reason for my friend's blood clot problems, and that I had a doctor that wasn't pushing the bcp over more difficult treatments.

Had the surgery the Thursday before Memorial Day (fibroid removal and D&C), felt fine afterward, even went to a festival two days after, and back to work the next week. On Wednesday afternoon, my gyn called me to tell me that I had cancer. By that time, he had already talked to the gyn/onc that he referred me to, and knew that I could get in quickly. He called me that night at home to talk more after I had a chance to digest the news, and told me that the cancer was grade 3, that prognosis would depend more on the stage, and I should not wait to get to the onc/gyn. Saw him the next day at lunchtime, did all my pre-op stuff the same day, and had my hyster the following Tuesday. Late the next day, my gyn gave me the good news that the cancer was stage I, contained to a small tumor that had invaded 1/8 into the uterine wall. Everything else was clear. The next morning, the onc/gyn told me that based on the stage, no further treatment would be needed, other than the paps every three months, annual mammogram and chest x-ray, and recommended a colonoscopy because of family history of colon cancer. He also recommended that I stay away from HRT.

I did ok for a while, but recently have had bad night sweats, hot flashes and insommnia. Already had the OK for black cohosh and evening primrose oil, so I went to a local clinical herbalist and she set me up with a regimen of black cohosh and primrose oil for the hot flashes, as well as California poppy extract (nasty tasting stuff!) for the insommina. Just been following that for a few days, but it does seem to be helping, as I've gotten some better sleep, and the hot flashes seem to be lessening. She also recommended rubbing mandarin essential oil on my feet at bedtime, as it is supposed to be very sleep inducing. Not sure why, but it really smells nice, so I am doing that too.

Have an appointment next week with my gyn for pap and checkup, and will talk to him about what I'm taking, as well as get his thoughts on progesterone cream, which I know has helped some others that I've talked to through this site.

I too have felt that there should be more attention on endo ca--and from what I've seen on this site, there are plenty of pre-menopausal cases. I feel very lucky that my cancer was caught so early--with the grade 3, I would have likely been in trouble if I had tried the pill, etc. A couple of women I work with have had similar symptoms to mine, and their gyns have not even recommended an endo biopsy. Both have had that done since, and one was even told that she shouldn't be concerned--she was too young for that type of cancer (she is 48). He backpedaled when she told him my story! I have been running my own personal "education" campaign, but not reaching many people--just friends and co-workers. Have been looking around on the web for benefits, educational campaigns, etc for endo ca, but haven't found anything so far. I'll be moving soon, and once settled in my new home, I plan to try to dig a little more for something to do--my thought is to try an educational campaign for doctors--to make them more aware of the risk of endo ca to pre-menopausal women. Would love to hear from anyone who has found any benefits, educational campaigns, etc that are already underway!
  #10  
Unread 10-23-2002, 01:18 AM
"Too Young for Endometrial Cancer"?

CWilli,

Wow - what a story! What I don't understand is: why did the endo biopsy not catch it? How much time passed before the D&C - did the cancer appear in that short period of time? That's strange, because I thought the precursor to endo CA is hyperplasia, and that at least the biopsy would have shown that. Hmm.

I love your idea of an educational campaign! I've sort of thrown my angry energy over this into trying to sue my doctor, but that may not work out. It looks like my doctor - doctorS, actually, two in a row - were worse than any of yours so far, in that my menstrual irregularities went on for a longer period of time and the CA got to a later stage. But the general lack of ignorance among physicians that our stories suggest is pretty scary. And WIERD, too - I mean, you can pick up your basic "PHysician's Desk Reference Guide to Women's Health" and it specifically says that any woman over 35 with heavy bleeding should be tested for endo CA! And the same with other menstrual irregularities. What were our doctors thinking? Maybe the American Cancer Society needs to get a "heads up" on this problem and THEY can do an educational campaign?

To Ginny: I don't think I answered your question about supplements. I take: a mega multi vitamin/mineral; calcium/magnesium; astragalus (supposed cancer prevention); Co-Q10 (ditto); extra vit. C (ditto); evening primrose oil (just learned on this site, supposed to help with vaginal dryness, among other things); fish oil (ditto). Haven't had hot flashes - maybe 'cause I also take PRozac.

Lily
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