Losing Ovaries?

stillgood · November 2006

I am a 4 year breast cancer survivor. Yeah!!! Had a bilateral mastectomy in 2002. Had immediate breast reconstruction (implants) 4 rounds of chemo. Taking tamoxifen. I developed lymphodema in my left arm. With a lot of health and life adjustments over the last 4 years (got divorced), all is well until today. Well now something has darken my light at the end of my tunnel again.

I was joking with my doctor about wanting to get back to having no periods. My period disappeared during chemo but then it returned at will. Sometimes, every 28 days, every 6 months, every 2 months, every 9 months. Has a life of its own.

Anyway, my doctors started talking about my having my ovaries removed because the research shows that there are better outcomes with medications for surviving individuals that are post-menopausal. As you can guess, I'm premenopausal.

I need to hear from you. I don't want to trade my sanity by being forced into menopause. I hear nothing but horrible things about menopause. Hotflashes, no sex drive, dryness, raging emotions, weight gain, forgetfulness (like chemo brain), etc.

No one told me that I would have to continue on medication after the 5 years of tamoxifen. No one told me that this was forever and ever.

I am right back where I was when I was told I had breast cancer. So confused and taking chances once again.

I think I'm rambling right now but I hate this. I hate having to make decisions like this again. I changed my life as I know it to have a life without breast cancer only to have to change my life again now not only will I not have breasts, I will be a raging lunatic, so unhappy. What a trade off for a life. I want to be happy and alive, not just alive. I HATE THIS!!!!

You ladies have helped me in the pasy with sharing your wisdom, can you help me out again.

Thanks

Stillgood - At least I want to be

karenack · November 2006

Hi There! If your breast cancer was ER/PR positive then you know that estrogen acts as fuel for cancer. Not only is mine ER/PR positive, but I also had cervical cancer in 2002. In my case, I know that I will live in fear of developing ovarian cancer. My oncologist also shares my fear and has recommended that I have them removed. I am only 43 and premenopausal as well as you. While I share all of your concerns regarding menopause, (I'm still a newlywed!!!) I have decided to go ahead with the oophorectomy following my chemo and radiation. Yes all of this really sucks, I agree but it is the hand we were dealt, as you know. I am sorry that you have to deal with all of this, but I wish you nothing but the best. Take care.

Susan956 · November 2006

Sorry that you are having to deal with this issue again. but great that you are now a 4 year survivor... Now for my expeience, but first off a warning... no two people are the same... But I will describe Memopause from my perspective. (By the way I went post menopausal when I was ~ 35 and took hormones for about 14 years... then oops breast cancer... so no more hormones...) Which put me into a very immediate post menopause condition during treatments.

Now as to the items that you asked about.

Sanity - I never lost mine... Well if I did I haven't noticed it yet... lol...

Chemo Brain - Now that I am 1 year out from treatment, I am a sharp as I ever have been... My memory is better than most people half my age.

Hotflashes - For me the worst part of the deal.. While they are short in length (normally less than 5 minutes) they are intense and make you want to crawl out of your skin... but with all the other things that we have to live through they are just a discomfort. I have a magnet on my fridge that says... " I don't have hot flashes... I have short, private vacations in the TROPICS".. but I have to admit they are a nuisance.

By the way hot flashes can disturb your sleep...Because of taking Arimidex and hot flashes.. I take Ambien every night so I can sleep. Also the Arimidex does cause some joint pain.

No Sex Drive.... I haven't seen that as a problem... I think I have a very normal and healthy sex drive...

Dryness.. That can be an issue.. I have found that using REPLENS solves it for me. (You can find it in the grocery or drug store)

Raging emotions... haven't had a problem... but as you can probably tell I don't let to many things get me down.

Weight gain... I had gained weight as I was getting older... but once I got over treatment for the Beast... I decided to get serious about my diet (that is not going on a diet... but eating a healty diet) and exercise. I am down to a weight that I haven't seen since I had my son. (24 years ago).

So while I am sure that others have had a really tough time... for me the hot flashes have by far have been the worst for me.

Take Care... Hope this helped.

((((hugs)))))

Susan

OregonSeaStar · November 2006

I wanted to let you know that I really understand what a ride this must be for you! I had my ovaries removed 10 years ago at age 47. This was because both my mother and my oldest daughter had ovarian cancer. I was told at that time that it wasn't a matter of IF I would develop ovarian cancer, but WHEN.

For me, it was pure relief to no longer have to deal with erratic periods and monthly cycles from hell! I don't have problems with dryness, sex drive, raging emotions, or forgetfulness. My weight is an issue that I've always had to deal with, but I didn't notice any measurable change since the oopherctomy. My biggest negative issue with it are the hot flashes. But, you do learn to deal with it in your own fashion. I can go all day without any, but have MANY during the night. One thing thats helped me is a little fan that I have on my nightstand - as soon as I wake up feeling a hot flash coming on, I turn on the fan. My flashes are very short (1 or 2 minutes) and intense. I've sort of learned to expect them . . . .and just go with them.

If having this done gives you a better chance to live a long, long lifetime, go for it! You WILL learn to accommodate the little inconveniences. Yes, this is a pain to have to deal with (and aren't there SO many we have to face with this disease!), but you've done so well so far; you CAN do this!
-shelley

KathiM · November 2006

FIRST of all.....NAKED HAPPY DANCE!!!!! for the 4 years!!!!

I am now 51 years young. I 'lost' my ovaries during the surgery for my colorectal cancer. I had hot flashes for about 3 months, and now, 1 year plus post surgery...well, nothing more than a quick fanning won't help.
The moral? EVERYONE is different. I was ER/PR positive, but my family is already in place, and I was headed toward menopause already. I am on Tamoxifen, the chemo for both cancers made me osteoporotic...Tamoxifen is easier on my poor, brittle bones (hehehehehe).

Mood swings? No more than any one of we survivors...the beast comes complete with mind games...

No sex drive? I have more than before my surgery, with the tamoxifen....

weight gain? I have actually LOST weight (5 pounds).

Forgetfulness? Ummmmmm, WHAT were we discussing again????

Having a sense of humor? Priceless.

Hugs, Kathi

cabbott · November 2006

Boy oh boy does your question bring back memories! I am a 4 year now survivor too. At one year my periods on tamoxifen were on again, off again and my doctor feared it could be ovarian cancer. Well, tamoxifen can produce stubborn cysts and weird periods in some people, but ovarian cancer can too. They can't tell it is ovarian cancer until they take the darn things out. As you know, they can't put them back once they're out. I hummed and hawed around for two years until I was tired of the pelvic and transvaginal ultrasounds every three months. They didn't hurt but they were, well, very very intimate and it kept reminding me of being sick--something I was sick and tired of. I read lots of junk on the net about lost sex drive and problems. All surgery does have side effects, but I sailed through my oopherectomy, salapingo and hysterectomy with very few problems. (Since it was voluntary, I did have time to get in great shape for the surgery by regularly exercising beforehand.) The memory problems were much worse before the operation when my hormones were up and down. They just disappeared when everything was gone and no doubt the level hormones helped. Getting off the tamoxifen probaly helped too since it tended to cause me to feel somewhat depressed. The hot flashes, especially after I started exemestane (aramosin), intensified some, but they seem to have leveled off mostly now. When they happen at night I rejoice and run to the bathroom without getting cold feet. I flip covers off and on as needed and need less clothes to stay warm all winter. Cold water to sip on takes care of most of the summer flashes. Some of the other benefits of my operation are the ability to go on exemestane(better than tamoxifen for prevention of er-positive cancer), less mood swings, warm feet in the winter, rosy cheeks without blush year round, less worry about ovarian cancer or uterine cancer (don't forget that tamoxifen can cause that too), and less cost for "women's supplies" not to mention no sudden monthly surprises anymore. I grieved the fact that I would not have anymore children,but in my mid-forties I was getting too old for that anyhow. My biggest worry before the operation was about how my sexuality would be affected. I decided on a supra-cervical hysterectomy. Though I will never know if it made a difference,things still work just fine. Dryness is a big problem during intercourse, but lubricants can be purchased. In short, I didn't have near the problems I feared and I think it was the right decision for me in hindsight. Good luck making the right decision for you.

inkblot · November 2006

Hi there stillgood:

Saw your post a few days late but wanted to add to all the great thoughts already here for you:

I'm so sorry that you've had to deal with so much.
My heart goes out to you. It's never an easy journey and sometimes it seems the surprises are on the war path in our direction! LOL Take heart though...things have a way of eventually calming down, one way or another. Don't let it all make you feel as if you HAVE to do "something" right away. Don't put that kind of pressure on yourself. Slow down and think this thing through.

My experience: I was pre-meno when I was dx'd with bc. My cancer was hormone negative. My ovaries shut down after first chemo and not one period since. That was over 5 years ago. As far as I'm concerned, while my ovaries are still present and accounted for, they're virtually silent. Likely still KO'd from the chemo. I refer to them as
"fried". At any rate, my menopause was very sudden. Went from regular, normal periods to none in what felt like 60 seconds.

No hot flashes. Night sweats however, were
drenching for a while, post chemo, but after a time, no real problems. Emotionally, I'm still smooth, if we discount the time I spent in the passenger seat when my son was learning to drive about 3 years ago. My sex drive is good, unless I'm tired but that was the status quo before my bc...so nothing new. Vaginal dryness: some, but the trusty Replens remedies it and no weight gain.

The thing here is that you do not "have" to give up your ovaries. You're still the captain of your ship, after all. Your doc can make recommendations but cannot force you to do anything you don't want to do. Don't take his/her suggestion and mention of stats, as the final word. Research the connection re pre and post menopausal survival stats w/meds and without and w/oophorectomy and decide for yourself if the percentage points stated appeal to you. Were the number of women cited significant? Are there any other alternatives to help regulate your periods and make them more comfortable in any way? Naturals, herbals or pharmaceuticals that are safe?

Tamoxifen, all by itself, can be beastly for some women and cause hot flashes, in addition to other problems. So much so that some stop taking it, yet others have no problems while on it. We just don't all respond the same.

Ditto the meds proposed after you finish Tamoxifen. Likely you're talking about Femara?
Same thing applies: It is YOUR choice about taking anything at all. Some of these regimens and theories are so new, that no one can say just what the advantages really are because not enough people have taken them long enough to find out how the data holds up, beyond the initial trials. Trials typically involve a very small number of people, compared to the number of people who will be using the drug once it's marketed. Often, that's where different data may come in and sometimes, the data/expectations change.

Just slow down and take your time. I know the wacky periods are a pain, but you will benefit from the peace of mind you'll have if you take the time to check everything out thoroughly for yourself. Even get a 2nd opinion. Can't hurt a thing and may give you more insight and a greater level of confidence in your ultimate decisions.

Also, think about this: Have ovaries removed and there goes the "biggest" source for hormones. However, your adrenal system still produces hormones, it's in many foods, etc.. so nothing is going to rid ones body of ALL hormones. Have your gynecologist test your Estrodial levels. S/he will be able to tell you what they are and what they mean and may even have some alternative suggestions which are safe and effective for you, without oophorectomy.

Remember that we're all different and some women have no major issues at menopause, while some are plagued with many difficulties. I believe that a lot depends upon our general health, attitude, (don't expect that every horror story you've heard will visit you too!) lifestyle, diet and exercise regimen and just in general taking excellent care of ourselves with attention to diet, supplements and a good stress management focus.

((((stillgood))))

Wishing you all the best and let us know what you decide.

Love, light and laughter,
Ink

AuthorUnknown · November 2006

And I know as you to help! Do not think, I not the madman. I as well as you was sick of a cancer of lungs. I was long treated in dear clinics, but nothing helped. I have despaired and going to die. But the my dear daughter has learned about the person who treats a cancer, medicinal grasses. It has contacted it and has asked than it can help in the circumstances. To us have answered, that a cancer we shall cure and it is just necessary to carry out instructions. I at once have thought, that my daughter deceive what to receive money. There is a treatment of 110 000 dollars. And I have not given money of my daughter and would tell that it did not contact which people at all did not see. But my daughter has disobeyed me and has taken the loan in bank and has paid the necessary sum. In a week we have by mail received a small package. In it there was some kg of the dried plants, crystals of salts and the detailed instruction on preparation of medicines. I was malicious on the daughter, but understood, that it does it of love to me. And I have started to accept a medicine. Also there was my surprise - I have felt better! I have recovered in a month. My lungs became similar to lungs of the baby, and I smoked 35 years. Doctors who have told, that I shall die, have been surprised by my healing. They have told are a miracle. But since then has passed 6 years. And this miracle has occured to many people to whom I have advised to write the letter and to ask the help for the unusual doctor. On my eyes have been cured 28 person with various forms of a cancer. All of them have paid the various sums of money. From 40 000 up to 150 000 dollars. To one little girl, all was free-of-charge.
I as know, that many very known people used these medicines. Many people do not trust me, but I have gone through all, and I approve, that miracles happen. And I give a guarantee to people who doubt of my words, that they will recover. Now I alive and healthy! Both I am happy! And I wish your of good luck and health, and please do not despair, simply strictly carry out instructions. I guarantee to you, that with you all will be good.
I wish you healing and I ask - address for the help to this email- weter09@yahoo.com

Forgive my bad English.

Yours faithfully Dok Manomah.

stillgood · November 2006

inkblot said:
Hi there stillgood:

Saw your post a few days late but wanted to add to all the great thoughts already here for you:

I'm so sorry that you've had to deal with so much.
My heart goes out to you. It's never an easy journey and sometimes it seems the surprises are on the war path in our direction! LOL Take heart though...things have a way of eventually calming down, one way or another. Don't let it all make you feel as if you HAVE to do "something" right away. Don't put that kind of pressure on yourself. Slow down and think this thing through.

My experience: I was pre-meno when I was dx'd with bc. My cancer was hormone negative. My ovaries shut down after first chemo and not one period since. That was over 5 years ago. As far as I'm concerned, while my ovaries are still present and accounted for, they're virtually silent. Likely still KO'd from the chemo. I refer to them as
"fried". At any rate, my menopause was very sudden. Went from regular, normal periods to none in what felt like 60 seconds.

No hot flashes. Night sweats however, were
drenching for a while, post chemo, but after a time, no real problems. Emotionally, I'm still smooth, if we discount the time I spent in the passenger seat when my son was learning to drive about 3 years ago. My sex drive is good, unless I'm tired but that was the status quo before my bc...so nothing new. Vaginal dryness: some, but the trusty Replens remedies it and no weight gain.

The thing here is that you do not "have" to give up your ovaries. You're still the captain of your ship, after all. Your doc can make recommendations but cannot force you to do anything you don't want to do. Don't take his/her suggestion and mention of stats, as the final word. Research the connection re pre and post menopausal survival stats w/meds and without and w/oophorectomy and decide for yourself if the percentage points stated appeal to you. Were the number of women cited significant? Are there any other alternatives to help regulate your periods and make them more comfortable in any way? Naturals, herbals or pharmaceuticals that are safe?

Tamoxifen, all by itself, can be beastly for some women and cause hot flashes, in addition to other problems. So much so that some stop taking it, yet others have no problems while on it. We just don't all respond the same.

Ditto the meds proposed after you finish Tamoxifen. Likely you're talking about Femara?
Same thing applies: It is YOUR choice about taking anything at all. Some of these regimens and theories are so new, that no one can say just what the advantages really are because not enough people have taken them long enough to find out how the data holds up, beyond the initial trials. Trials typically involve a very small number of people, compared to the number of people who will be using the drug once it's marketed. Often, that's where different data may come in and sometimes, the data/expectations change.

Just slow down and take your time. I know the wacky periods are a pain, but you will benefit from the peace of mind you'll have if you take the time to check everything out thoroughly for yourself. Even get a 2nd opinion. Can't hurt a thing and may give you more insight and a greater level of confidence in your ultimate decisions.

Also, think about this: Have ovaries removed and there goes the "biggest" source for hormones. However, your adrenal system still produces hormones, it's in many foods, etc.. so nothing is going to rid ones body of ALL hormones. Have your gynecologist test your Estrodial levels. S/he will be able to tell you what they are and what they mean and may even have some alternative suggestions which are safe and effective for you, without oophorectomy.

Remember that we're all different and some women have no major issues at menopause, while some are plagued with many difficulties. I believe that a lot depends upon our general health, attitude, (don't expect that every horror story you've heard will visit you too!) lifestyle, diet and exercise regimen and just in general taking excellent care of ourselves with attention to diet, supplements and a good stress management focus.

((((stillgood))))

Wishing you all the best and let us know what you decide.

Love, light and laughter,
Ink

Ink, thanks so much for your info. I remember you when you responded to some of my inquiries when I was first diagnosed four years ago. You know I do need to slow down and think things through. But just the thought of having to do more. I just want to be Whole again. Thanks again for your response and all the other ladies that take the time to make us feel better about our circumstances.

Losing Ovaries?

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