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

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  #11  
Unread 10-23-2002, 05:34 AM
"Too Young for Endometrial Cancer"?

Let's call Oprah.....hahahahaha! She is always there for women trying to get through things and get different causes recognized.
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  #12  
Unread 10-23-2002, 06:55 PM
"Too Young for Endometrial Cancer"?

great idea about oprah!

cwilli - good thing you were persistent - that's probably why your runaround wasn't too bad. i can't believe how fast you got your hyster. i had to wait 3 wks after finding out the cancer dx before the hyster and then 1 more wk. for the path!!!!

drs. these days don't order tests and refer patients out because the insurance companies put the squeeze on them not to. i think this may have something to do with drs. lax attitudes. it could also be that they just don't know (scary!). i also think all these menopause books and premenopause books are doing more harm than good - at least in my case. they tend to say that drs. do too many unnecessary hysters and we can control excessive bleeding, etc. with progesterone cream and so on. the ONLY reason i wasn't persistent at first was because my dr. said no way, no how i could possible have cancer and then i read some books that pretty much backed her up. basically, i thought i was one of the unlucky people who just had to endure this till menopause came along and shrunk my "fibroid".

basically, the new gyn i went to said the same thing, but when a routine blood test came back with my hemog. at 8 (in danger territory for a transfusion), things began to take shape. but, believe this or not... even then she still didn't think endo cancer! she said i needed a colonoscopy asap because of the blood loss!! i finally convinced her that it was DEFINITELY from my extremely heavy periods and that's when the d & c was ordered.

lily - i do think your menopause symptoms are less because of the prozac. i just saw a friend of mine today that said she hasn't had any problems with meno, doesn't take hrt or supplements, but she's on prozac and she thinks that's the reason. of course, her menop. is natural and not surgical. also, thanks for the list of supplements you take. i'm going to run right out and buy mandarin essential oil!! here's what i've been taking:

remifemin (black cohosh)
evn. prim. oil
a super duper nutritional supplement liquid stuff
vit c
vit b (with 800 folic acid)
beta carotene
ginko (for the brain)
vit e (supposed to be good for hot flashes/vag. dryness)
calcium/mag
CoQ10 (cellular energy?)
some flax seeds ground up on cereal or in juice (dryness/hot fl)


i have hot flashes constantly - day and night, but it really doesn't bother me that much - i guess i'm still at the stage where it sort of intrigues me (but i do hate waking up at night). i also have heart palpatations, which can keep me awake at night but only because, for some reason, i can hear blood rushing (like a pulse) in my ear - so i can't wear my earplugs to block out dh's loud snoring. so... together with the night sweats, blood pulse in ear and loud snores - things are far from restful in my bed.

as far as my dx - i know... it doesn't sound like cancer but my dx is endo cancer. actually, to me it was a miracle. i had the d & c, they tell me endo cancer for sure, i have the hyster and they find a tumor and they take lymphs and are talking about radiation, then path comes back and the tumor is "turning"? anyway, i feel like i had a miracle happen between the d & c and the hyster.

the onc says with the type of tumor i had, it's real unpredictable and they don't know how it will act so they watch me for 2 yrs. it had estrogen receptors and progesterone receptors in it so i can't take any progesterone either. he did say ok for the black cohosh but not to take other estrogen supplements and no progest.

by the way... my onc says that FOR SURE there will be vag. dryness, even if taking prim oil, vit e, flax. i'm hoping not - what have you all heard?

ginny
  #13  
Unread 10-23-2002, 07:52 PM
"Too Young for Endometrial Cancer"?

Hi all. So far I think I win the "prize" for being the youngest one diagnosed with endo CA on this string. I turned 34 2 days after my biopsy and 2 weeks before my diagnosis. I hadn't heard about the SSRI-CA link - I've taken them on and off for almost 10 years. So far my endo CA is being managed with hormone therapy - something that was offered to me because of my age. I have a biopsy in mid-December to track my progress.

I didn't have any trouble getting a diagnosis. My gyn suggested an ultrasound and biopsy as soon as she heard about my symptoms of extremely painful, long periods and frequent spotting in between. When the ultrasound came back "ok" she decided to go through with the biopsy as a precaution - she was pretty stunned when it came back endo CA. She immediately told me to see a gyn-onc (she couldn't refer me to one because I had moved out of state - in fact she had to deliver my diagnosis over the phone while I was in my 2nd week at my new job:cry. Fortunately, my partner has a friend who is an oncologist and he recommended someone in our area.

All the breast cancer awareness stuff is getting to me too. I need to come up with a way to constructively channel my irritation!
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  #14  
Unread 10-23-2002, 10:22 PM
"Too Young for Endometrial Cancer"?

From the research I've done (believe me, I wanted to know why the cancer was not found on the endo biopsy!), I've learned that the biopsy is a good, but not foolproof test--samples are taken from the endometrium, but it is certainly not as complete as a D&C as far as the amount of tissue available. I had the biopsy in early April, and the D&C in late May--and both my gyn and gyn/onc felt that the sample taken in the biopsy just didn't hit the right spot, as it was very early and a very small tumor. Don't know if hyperplasia is always a precursor to cancer. I know that both were very concerned about the grade 3, which probably helped with getting the hysterectomy scheduled so quickly. I was surprised to get the lab results back so quickly after the hyster--initially I was told that it would probably be about a week. Definitely was a huge relief to get the good results so fast.

I just feel like someone was watching out for me on this one. I was so persistant about getting the bleeding and cramps taken care of because I was training for a week long bike tour in the Rockies, and the periods were interfering with that . . . in fact, I was wondering if I'd be able to manage the ride at all. (Obviously, I didn't after the hyster!) Then, my friend's experience with bcp and blood clots definitely played into my decision to not go that route. She was embarrassed to admit that she was on the bcp at her age (46, and already had her tubes tied)--but knowing what she went through may have been a livesaver for me--and I've thanked her many times for sharing that info with me. And, my gyn was great--so many seem to want to call it perimenopause, and don't go any further--he had no hesitation to get the tests ordered, and do the fibroid removal and D&C to take care of the problem instead of treating the symptoms and "waiting and watching"--never pushed me to do anything I was the least bit hesitant about. He was very shocked at the diagnosis after the D&C--and concerned that the cancer was not found on the biopsy. I really think it was just the way it goes sometimes--not anyone's fault. He couldn't have been more supportive, informative and calming throughout that week--which was what I needed right then. My gyn/onc was an excellent surgeon, but didn't have quite the same "bedside manner" as my gyn, so I was thankful to have them both there for me. Sometimes, everything just lines up right, and it sure did for me this time around

Now, I just want to find some way to give something back, and raise awareness of this type of cancer. After my move, of course--can only handle so much at once! I liked Chris's Oprah suggestion, but it will not be me doing something like that--I'm much more comfortable behind the scenes!
  #15  
Unread 10-24-2002, 12:07 AM
"Too Young for Endometrial Cancer"?

Legume, geez, I can't believe this happened to you at age 34. Did the doctors speculate about a REASON? When you said that you were on SSRIs for 10 years, I have to say, I felt a little sick. Which one(s) were you taking? The thing is, it makes perfect sense that there is a connection. Prozac is now being prescribed specifically for PMS (as Sarafem); PMS is a hormonal problem, so Prozac apparently does something with hormones. Prozac also helps hot flashes - again, suggesting an effect on hormones. And endometrial cancer is caused by excess estrogen. Arrgh. Your experience renews my resolve to get off Prozac - I'm down to 1/2 of my regular dose now.

It's nice to talk to other people that admit to being somewhat irritated by the breast cancer awareness stuff! I mean, obviously we want plenty of research on breast cancer and sympathize with victims, but I think we're feeling a little bit like society doesn't care about OUR problem. That's how I feel, anyway.

Ginny - wow, that't good that your doctors checked the hormone receptors on your tumor. They didn't do that with me. The oncologist who did my surgery, in fact, suggested (without any info on receptors) that it was just fine for me to use estrogen - with Stage III cancer! I thought he was nuts. Then when I moved and got a new oncologist, he told me it wasn't recommended. Well, duh.

Someone said that those of us who had delayed diagnoses might be partly due to doctors not wanting to run "unnecessary" tests... actually, in my case, that's not true. My doc. actually at one point ordered an MRI of the hypothalamus (to get to the bottom of why I was skipping periods) - but DIDN'T order a simple biopsy! The MRI cost about $1,000 and took over 20 mins; the biopsy costs, I THINK, several hundred$ and takes less than 5 minutes. Arrrgh!

I liked Chris's Oprah idea! Actually, it had previously occurred to me that the creator and hostesses of this whole site - not just cancer concerns - should go on Oprah - I mean, this site is GREAT! It's a wonderful example of the internet being used for the best possible purposes - bringing people together, sharing crucial information. I just can't sing its praises highly enough. If that happened, and they wanted a segment specifically on endo cancer, I'd do it in a minute! I'd be scared ****less, but I'd do it.

I'm thinking I should write to the American Cancer Society and ask them what they're doing to educate doctors about this. If I do, maybe I should print out this whole thread and send it? Would you all mind? (I don't know when I'll get a chance to do this, but I'm thinking it would be a good idea - what do you guys think?) Or maybe at some point we should privately exchange real names and addresses, and sort of sign a group letter to the ACS? Anybody into that? While not all of us had delayed diagnoses, the fact that some did suggests perhaps a lack of awareness. I'd also like to know if there's enough research being done on causes and cures (and this possible SSRI connection is quite disturbing).

Lily
  #16  
Unread 10-24-2002, 05:46 AM
"Too Young for Endometrial Cancer"?

Lily
I agree there seems to be a lack of awareness for this type of c with most gyn's. My gyn is so thorough, typically.....and I don't feel that she pooh poohed me and put me off....I truly believe she thought there was noway that it would be anything more than perimenopause or then the a simple polyp she saw when she did the sono......I actually am very grateful to her....once she suspected c after my d and c things got moving at a lightening speed.....she arranged ct scan, colonscopies....and pushed to get them done immediately. She is also very pro-active in cancer screenings.....ie....colonoscopy, etc and I know she would have never let me not get testing I needed....I think as you said .....just a lack of knowledge.....that possibly this is becoming more common in younger woman.
  #17  
Unread 10-24-2002, 10:41 AM
"Too Young for Endometrial Cancer"?

you have my permission to use my replies. when fran drescher wrote her book regarding her delayed dx, i'm sure she went on talk shows to push the book and hopefully at that time this problem with endo cancer got to a few people. i don't remember when her book came out at all. matter of fact, the way i found out about her book and her own dx was on this wonderful site!!!

good idea about getting this site out there. a friend of my mom's was just diag. with endo. cancer and had a hyster and i told my mom to please give her this website. i told my onc. about this site but he didn't seem too receptive about taking the info and giving it out. he really is a great dr., but i believe he's just concerned with the physical - take cancer out, treat cancer. as we all know, the mental plays an important part with recovery as well and knowledge is always a good thing.

i hate to tell you all this, but my hygenist had a d & c and they didn't even find the cancer then. she just had some pre-cancer cells and was then told it was her decision: wait and see, or just have a hyster. she actually is in the age range that are supposed to be more susceptible to endo. cancer, was on hrt and had a fibroid they were "watching" for the last 10 yrs. still... it was her decision to have the hyster - the dr. didn't push it and she got the impression the dr. didn't think she should have a hyster - that there was no alarm. she was extremely concerned and decided to change doctors and have the hyster because she just didn't like the dr's attitude about the whole thing (unconcerned). she thanks God everyday she made that decision because as it turned out, her uterus was riddled with cancer cells.

it seems like d & c's aren't being done enough anymore. 2 yrs. ago my gyn at that time said they were finding that d & c's weren't very effective for excessive bleeding - but now i know at least cancer detection would have been a possibility!!! too bad she falls into the group that thinks everything is perimenopause. it is almost as though d & c's are out of style. maybe that's why we're seeing more of this type of cancer. no one is doing d & c's anymore (perimenopause seems to be the new dx these days ) - they may not be effective for bleeding issues, but at least it can rule out cancer (sometimes, that is).

oh well... it is frustrating. i agree about the breast cancer. i thought i read (on the internet) that uterine cancer was the most common form a woman gets. if that's the case, it needs better PR!

ginny
  #18  
Unread 10-24-2002, 09:14 PM
"Too Young for Endometrial Cancer"?

Lily,

OK with me if you use my posts. I think it is a great idea to send something to the American Cancer Society--can't hurt.

The woman who did my first vaginal ultrasound made an interesting comment to me. She thought that many of the younger doctors were too quick to start running lots of tests, but that many of them weren't very good at diagnosis, or even at interpreting the results sometimes, and didn't take enough time talking with their patients about symptoms, history, etc--just want to make a quick diagnosis and move on. I think I've experienced some of that with my pcp, who always seems to be rushing through things, and I've had to ask her to slow down more than once.
  #19  
Unread 10-25-2002, 08:25 PM
"Too Young for Endometrial Cancer"?

I'll try to get around to that letter to the American Cancer Society soon, and will include some of these posts. I'll let you all know if I get any response.

In my experience, pretty much any doctor I've ever had is in a big hurry, and typically, no matter how nice they are, they become visibly impatient with questions. I never realized, until my cancer diagnosis, that this kind of behavior COULD cost someone their life. Now I force myself to keep asking questions if necessary, and if they look annoyed, tough. I'm considering switching one of my doctors, but she's got some good points, and I'm afraid I could just end up with someone worse! A sad commentary on the medical profession, eh?

Lily
  #20  
Unread 10-25-2002, 10:44 PM
"Too Young for Endometrial Cancer"?

Well, I have been lurking around on this site for a few days now. I guess it is time for me to jump in. First of all, please excuse me if I don't get all the abbrev. correct. It may take me awhile to learn all of the D-this and D-that!
I have not been dx with endo. cancer, but I am expecting the worse. I will have an endo. biopsy next Thursday. I do think you all are on the right track about the Oprah show and getting the awareness of endo cancer out there. I was just ignorant to what my body was trying to tell me and just thought it had something to do with going into menopause, even though I thought 44 yrs old was alittle too young. I was not ignorant to the fact that when I had a warning sign for breast cancer I acted on it. My gyn seemed more concerned about the fibroids than the bloody nipple discharge I had. He just never thought I could have breast cancer, just like I thought I could never have endo. cancer just because I haven't had a regular period for a year. I really think it is all about AWARENESS.
So as a breast cancer patient of just 3 months now, and facing a hysterectomy regardless of cancer or not, I do understand where you ladies feel cheated because of less awareness. It's just women do not become aware of anything being wrong until there is a problem. I am guilty!!! I just never thought of having these female cancers because I have no family history of this. I never considered myself as being a high risk to this cancer.
When my nipple smear came back as cancer, all of the pelvic issues were put on hold until I got the breast taken care of. Although my pelvic issues are not bothersome, I think they could be very serious. I have 5 uterine fibroids which I was told were fairly large and none were grape size, ovarian cysts, endometrial thickening and amenorrhea. So now I am wondering, if I do happen to have endo cancer, what stage could it have advanced to because it didn't get checked out 3 months ago. So I have had a mastectomy and now facing a hysterectomy. How many more "ectomies" will I have to have?
I will say though, some women welcome the month of October because it gets the word out about their disease while other women dread October because it reminds them of what they had to go through to survive.
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