Say NO to Ovary Removal......decisions decisions!!!!!

Butterfly38

To All the Special Brave Ladies Out There

I am brand new to this Breastcaner.Org Forum, but not new to breast cancer. I was diagnosed at the age of 32 years young and was brought to my knees on 27 October 2006 the Day the Dr told my I had Breast Cancer. I had a lump removed and 6 positive nodes. I had my first session of chemo on 6 December 2006. Lost my beautiful locks of hair on 26 December 2006. Before I even got to the Wits Donald Gordon Institue for my chemo sessions, I would get sick outside.(6 months) then 31 sessions or Radiation which wasnt bad at all, more time consuming than anything else. 1 years treatment of Herceptin with no side effects. I am on Tamoxifen 20mg once a day and zoladex injections every 3 months.

During this 5 year period my Oncologist has advised me on more than 1 occassion to have my ovaries removed due to Estrogen Positive Breast Cancer (Weakly Positive 30-60%). Zoladex/Tamoxifen are dreadful when it comes to HOT FLUSHES/FLASHES. Jacket on/off every 20-30minutes a day, sleep with the aircon on in Summer and winter is a bit of relief but not much. I am married and have 2 beautiful boys. My married life has suffered in the bedroom dept due to extreme vaginal dryness and there is no product that can help unless you actually take estrogen cream.

Now my treatment plan will be coming to an end in December (no more tamoxifen/zoladex). But the big question now is Ovary Removal. I personally feel that I dont want to remove my ovaries as Menopause is a killer, noone mentions the aches and pains of bones/hot flushes/heart disease/dementia/mood swings etc etc....... I just want to feel normal again. Who knows I might even want to have a little girl.

Anyone out there in the same position deciding to make that big decision..................................  I have come so far, done all the treatments

I just want to LIVE a little....

Butterfly38

alexandria58

Butterfly -  Never been in your position, but I will weigh in with a few thoughts. You didn't mention if you had the BRAC test.  If you're positive, then it's a no-brainer.  Get them out. 

                  I went through Menopause 10 years ago.  It was not that bad.  Some hot flashes on occasion, but none of the other things you mentioned.  Know plenty of older women who also came through menopause intact.

           Frankly, if you are not BRAC positive, then, I'd get a second opinion before I had the ovaries removed, simply because I hate surgery and it is major surgery.

            Good luck with whatever you decide.      

MCummings388

Dear Tabb2000

I was just Diagnosed and I am 38 and I had the Mirena for 5 years

Leah_S

Butterfly, I agree about getting another opinion. Going through menopause at the age of 38 (about 12-15 years younger than natural menopause) will bring its own set of health issues. Heart issues, bone issues.... cancer is not the only problem you can face.

In addition to speaking to another onc, speak to a gyn and a cardiologist.

It's never easy, is it? Best of luck.

Leah

barsco1963

butterfly38 - I am 48, BRCA + and have decided that I would like to have my ovaries removed. I am past having children and am also on tamo/zoladex. Menopause would not be an issue for me.

However, my onc doesn't seem to think that it is necessary. My GP agrees that if it were her, she would want them removed. My obgyn tells me that the "guidelines" (I live in Canada) don't allow for ovary removal unless there is an indicated problem (or they are in there to do something else). She doesn't want to get in there to remove them and have a complication arise. I was a little taken aback - thought that it wouldn't be a problem if I wanted to go through with it. I have one more appt with a high risk obgyn in Aug. Will see what she has to sa

Just goes to show that there are many different views out there.

Take your time to think about it. It is a big decision.

pip57

My onc was all for my ovary removal.  It was the gyn that was hesitant.  A letter from the onc changed his mind.  I live in Canada too, so it has more to do with your doctors than the system.

I do not regret having the surgery 4 years ago.  However I was 51 and due to hit menopause soon. 

knittingmama

HI!

I am BRCA 2+ and 43 yrs old now. I am almost 1 year past treatment, last rad was in Aug of '11. I had my ovaries removed last November on both my OB/GYN and Oncologists recommendation. My cancer was estrogen positive. 

After several reactions to the different AI's I am glad I did. I can't take Tamoxifen or Arimedex because of severe side effects. I tested last month for estradiol and I am a low -12. Which is good in respect to the cancer. Bad in that my bones and other systems may suffer.

 Take into account your long term goals. Ask alot of questions and when it comes down to it, you have to be confident in your own decision and not look back. Don't rush it. 

Butterfly38

Thank you for your thoughts and personal situations, has any one of you been on tamoxifen and zoladex for 5 years, that combination is a recipe for flaming hot flushes, I just know that when the medicine stops, my ovaries will start working again and then all this nonesense with menopause will be gone aswell, but yes I will then have that constant worry all the time because I havent removed my ovaries, but then again I worry everyday anyway. I have never been tested for BRCA1 or BRCA2, someone explain what this means.

Butterfly38

thank you for your thoughts, they say that because the cancer responds to estrogen they want to get rid of the ovaries. I am weakly positive for estrogen so dont know if that weighs in my favour.

melly1462

I am also struggling with this decision.  Finished chemo 6 weeks ago and onc is pushing for ovary removal.  I'm 50, premenopausal, and high risk of blood clots.  She does not want me on Tamoxifen at all.  Got a second opinion from onc I saw for clots 2 years ago and she said she prefers trying Tamoxifen with Coumadin. 

Call me crazy but I was more prepared to lose my breasts than lose my ovaries!!  I need to make a decision in the next couple of weeks.  My preference is natural menopause, not surgically induced.  But do I risk clots?? 

@Butterfly38:  Is your onc wanting to put you on an AI after your ovaries are removed?  That's what onc #2 proposed for me.  5 years on Tamox followed by 5 years of Arimidex.  

The BRCA1/BRCA2 tests to see if you carry the gene that puts you at very high risk for breast/ovarian cancer.  It's my understanding most insurance companies will not pay for it unless you had a first degree relative who also had one of these cancers.   I had it done due to family history.  If I had tested positive, no question, I would have my ovaries removed.  

Best wishes with whatever you decide.  

1Athena1

Butterfly -

(Edited) 

Good luck with whatever you decide to do.

shadow2356

This is a great question. My cancer was estrogen negative but I just keep thinking my ovaries are an accident waiting to happen. My oncologist doesn't think it is necessary. I went to an OB/gyn oncologist. She said it would really be my choice and she could justify removing them. She asked when my last period was and I told her 10/2011. Chemo stopped it for about almost two years. Then I got two and it stopped. She said once it is a year I am not getting that much estrogen protection anyway. She said the estrogen helps protect the heart, bone density and protects from Alzheimer's.

Wouldn't you know it, I get my period the day after I see her. So I am back to "what to do?" again. It is a tough question. I am BRCA-.

Good luck to everyone making this decision.

Butterfly38

Indeed everyones situations are so different but yet we all have 1 thing in common Breast Cancer (have/had), we all  want the same goal :to live long and happily ever after. How we all get to that point in our lives I seriously dont know, but can say that having a positive attitude does help. My last Zoladex Injection will be in September (it lasts for 3 months) together with tamoxifen, so basically by December 2012 I will have finished my 5 1/2 years of /chemo/radiation/herceptin/zoladex/tamoxifen and finally come out of medically induced menopause. Gone with the hot flushes that currently have ruled my life for 5 years.

If I feel I cannot cope with the anxiety of having my ovaries once they start functioning again which they will, I will review my situation and say ok I cant deal with this and have them removed, but for now I think I am making a good decision. 

christina0001

Butterfly, if I were in your shoes, I would seek out a second opinion. I feel strongly that if you have any doubts or concerns that your onc cannot alleviate, you need to see another onc for a second opinion.

Best of luck to you. I am not as far down the road as you are...I will be starting Zoladex next month.

Lauren3

I am 32 and have similar stats to yours, except for the HER2.  Anyway, my oncologist hasn't even mentioned the ovary removal?!  I'm still on Tamoxifen but it doesn't even seem to be on his radar at this point.  I have heard menopause from ovary removal isn't as bad as what you get from ovarian supression but I imagine it's not fun either.  I hope you get the answers you need!

karody

Oh dear, I too, was diagnosed a bit young at 35.  I was going to see my OBGYN to have my Mirena removed as we were ready to start working on baby number 3.  Unfortunately, the doctor found a very large lump that turned out to be a 7 mm tumor of IDC.  I had four positive nodes.  At that point we decided that we would not want to risk the life of the mother of these two perfect angels we have to try to get another.  We decided to do the hysterectomy/oophorectomy and it still makes me sad to think about it.  I would have never done it if cancer werent the reason.  I really haven't had terrible trouble with hot flashes, though the vaginal dryness can get in the way of things.  My always oily and acne prone skin is now completely clear (silver lining), but my abs are suffering my challenged menopause metabolism.  I think whether you might want another child is a very personal decision that has a lot of factors including your helth history and expection.  If trying for a ruffly baby girl is important to you you should go into that decicion with the best information.

jenjenl

I had my BRAC test on Friday, if it's + those ovaries are OUT OF HERE!