Hormone replacement????

[gopackers]

2 1/2 years ago at the age of 35 I had a hysterectomy for a borderline tumor. Because I had my ovaries removed and am young, my oncologist has me on estrogen only replacement.  With all the new information in the news now I don't know what to think.  The thing is, these studies are on post menopausal women.  I can see where taking a replacement hormone when your body should naturally not be making this hormone anymore could be bad and I wouldn't do it.  But what about the people who were thrown into surgical menopause at a time their body would still be producing it? So if I was still getting my period, I could take birth control pills (which have a lot more estrogen in them than the estrogen replacement) in addition to what my body would be making and this is safe?!?!  Has anyone asked their doctor about this or has anyone heard of any studies being done on young surgical menopause people?  This is so confusing and scares me.  When I wasn't on enough estrogen, life was miserable.  I was 35 and yet I felt like I was 86!!  Now that I am on the right dose, I feel most like myself but this just scares me.  I feel like I am screwed no matter what I do.  Don't use the patch and live longer but be miserable or use the patch and die sooner.  Any thoughts ladies?

[Heffmeister]

My tumor was staged as 1c in the end as it had ruptured prior to surgery. It had grown to football sized because it was undiagnosed and masked by the fact I was pregnant. Same as you I had no implants, invasion and washings were clear. still frightens me that they drained 2 litres of fluid/mucus from my abdomen that has all been sloshing around inside of me!

I started on a patch called elleste 40 micrograms but it wasn't enough. I couldn't sleep and had the restless leg thing all the time. Now I have the 80 patch which is better (think 60 would be perfect but there isn't one). Not sure it this is available where you are as I'm in the UK.

Not sure how I would cope if they said I couldn't have HRT.

Good luck x

[gopackers]

I think estrogen is high during pregnancy too but WAY WAY higher than what you get from an estrogen patch.  My doctor feels the same as yours.  I talk to him at every appointment since it is scary to me but he always tells me that it is such a low dose and that I will do just fine.  Maybe it is case sensitive.  My borderline was stage l.  There was just one with no implants or invasion and my pelvic washings were all negative.  I will be talking to him again in March about all of this.  I am so sorry about your miscarriage.  This borderline stuff is so confusing.  I wish there were more answers for us.  Can I ask you what estrogen patch you are taking and what dose?

God bless!

Amy

Amy

[Heffmeister]

I had a total hysterectomy this year because of a borderline mucinous tumor. I started straight away on an estrogen patch (I'm 32). I was told it was fine for me and there would be more health risks to be not taking it - osteoprosis, heart disease, vaginal atrophy etc. My tumor grew like mad when I was pregnant (it caused a miscarriage at 23 weeks :-( so I'm thinking progestrone is high in pregnancy isn't it or is estrogen high too?

[gah_70]

I have to agree with nyc lady.  I was diagnosed at 35 5 years ago with stage 3C.  Surgical menopause was pure hell.  The night sweats that had me changing my sheets daily were enough to make me fume, let alone the constant fatigue.  About 9 months post-op, I asked my GYN/ONC if I could consider bioidentical HRT.  He said absolutely NOT.  He felt there were simply not enough studies done to prove or even suggest that it would be OK for someone with an OvCa dx.  Like nyc lady, I was warned against using soy, and OTC remedies because the usually contain soy as their active ingredient, and soy mimics estrogen in the body. He instead prescribed an antidepressant that had been shown to reduce some of the side effects of menopause.  It turned out to be a good thing I didn't take it because when I had my recurrence in 2007, my cancer was tested for estrogen receptors and found to be very receptive to estrogen.  In fact, I am currently on an estrogen blocker in an attempt to starve what cancer cells I still have.  The side effects are not pleasant, and I take Boniva to try to keep from having more bone loss, but that's just the choice I and my doctor made.;  The forum member of whom nyc lady speaks was very upset with herself when the implications of her HRT became known.  Granted, it was not proven that did it, but still, the mere thought it could have contributed made her angry she may have played a part in her cancer's return.  

I said all that to say this.  It is definitely your choice, and no one can say 100% that it will or will not cause the cancer to intensify and come back or not.  But if you can have your slides tested for estrogen receptors, it might help confirm if you made the right choice to continue taking it.  

Best wishes,

Gail

[nyc lady]

I was diagnosed as stage 1A, was 42 at the time of my last surgery...and was put on HRT....within a year I developed "masses" which they believe are related to the estrogen....it is now....8 years later and we are still watching and waiting.....is it cancer, maybe, but, if it is, it is very slow growing.....already had 2 surgeries....so we need to wait and see......but...there are may ovarian cancers that are estrogen receptive, etc....and HRT is not always the best thing for a survier, even borderline tumors can react in similar ways.  I am not even allowed to take over the counter because certain natural remedies mimic estrogen.   We also had a wonderful young lady that we recently lost who also was allowed to be on HRT and she felt that it caused the cancer to grow or grow faster.
It's a personal choice and yes, surgical menopause is rough.....but life is worth it.

[gopackers]

Thank you for your responses.  It is comforting knowing that I'm not alone with this yet I am also sad that others have to make these hard decisions too!  Jr1971, it seems to me that my doctor said the very same thing and that is what is confusing about the news.  From what I get out of it is that the study only looks at women who have gone through natural menopause and not surgical menopause.  I can see where taking something that your body is naturally not producing anymore is not good.  I don't know of any study for women in surgical menopause at a young age and that is frustrating!!

For now, I have decided to stay on the estrogen patch and I'll talk more with my doctor in March.  I know how I felt when the dose was too low for me and it was no way to live.  My husband and small children don't deserve it.  I was miserable and they knew it.  I guess it might be a risk but I also feel that there is no way to know for sure if taking the hormone will cause cancer.  I've read where people who took it and got cancer and I've read where people who didn't take it got cancer too.  My mom and dad both have cousins who had hysterectomies at a young age and took it.  One took it into her sixties and is fine and one is still taking it in her eighties and is very healthy (would never even guess she was in her eighties!!!)  So for now, I guess I will continue doing what I am doing and hope I am making the right choice.  God bless you all!

Amy

[hopeshell]

Hi there,

I can really identify with your post.  I was dx with Stage 1a ovca 3 years ago at the age of 37.  I did not take any HRT and I truly have never been the same as my pre-surgery self.  I now have osteoporosis three years later and I have been diligent about taking my calcium.  But, it just hasn't been enough.  The lasting effects to my body and sex life have been major.  Like you, my cancer stage has an excellent prognosis.  It stinks to feel decades older than you really are.    I also feel like there is no good answer to this question.  I tried to stack my odds by avoiding hormones, but it has left me with much less quality of life.  I also think I am less healthy because of the effects of lack of hormones.   I have tried to combat the side effects and did remain hormone free, but now I wonder if I made the right choice.   I didn't anticipate having to deal with all of these other health issues so soon.  Then again, maybe HRT wouldn't have made a difference.  But, it sure does feel like a no win situation.  It is hard to know which choice is bad and which one is worse. LOL :)

You never know if you are going to have a recurrence no matter what your stage.   Quality of life is very important.   There are many studies that show that women have more adverse long-term health issues the earlier they are put into surgical menopause.  For ones like myself, who do get many of the complications, life expectancy is reduced.  Studies also show that HRT can feed some types of ovca.  Borderlines are confusing and overall survival is very good for these tumors.  But, a couple of women on this board did get recurrence after taking HRT.  Of course, there is no way to know if the recurrence was related to their HRT.    

I sure hope you reach a choice that gives you peace and the best life possible.  We all do the best we can with what comes our way.    I think you will come to a decision that is the "best" fit for your life.   Just know you are are not alone in your frustration! :)

Shelly

[dian07]

This is a hard one.
I was diagnosed IC ovarian mucinous adenocarcinoma in April of 2005.  I had chemo and so far so good.
There is absolutely no cancer in my family.....not on either parents side.  Still, I had cancer.
I went on HRT off and on for probably 10 years......I can't say for certain......but I do believe that is probably why I ended up with ovarian cancer.  
These recent tests and studies just confirm my suspicions....which really makes me mad because, in a way, I did this to myself !
That's my take on HRT.....with or without progesterone.
I wonder what the stuff you are on is made from.....horse urine?  Even if it is bio-identical I won't touch it.
I hope you find the answers you are searching for......there is an awful lot of conflicting information on the internet.  Good luck.  When you get your answer come back and tell us!
Peace.
dian