Ovaries removed???

I "thought" I was told I did not have to have them out... geezzzzzz.. I will be asking my onco this with two weeks when I see her...

My gene test was negative too...

I hope someone who is her+ only know this answer on her...

BethNY??????? I know she is or was her2+... Lets keep this bumped Diana to make sure everyone her2+ sees it...hoepfully we can get an answer.

Blessing

Laura

I am at this point now.  I just finished my herceptin treatments and my dr wants me to have my ovaries removed.  I am er/pr + and her+.  I did the genetic testing as well and it was negative but my onc said that we don't want the ovaries to start producing estrogen again at all so that is why they are to come out.  I am on Tamox. now but then will switch to Arimidex I guess. 

I am ER/PR - and 58 yo.  I was just deemed postmenopausal this past May (my periods returned briefly after finishing chemo in Feb 07 - my onc laughed and said I had cast iron ovaries).  I know from various scans that I have a small uterine fibroid and a small cyst on one ovary (both are non-symptomatic).  My onc sees no reason for me to have my ovaries removed.

My female PCP has left her practice so I will be seeing a gyn for my PAP smear in May. I hope she doesn't suggest removal as I have no problems in that area and can't see losing normal healthy organs.

Diana -- did your gyn say why this was recommended?  Are you BRCA +?  Like another poster, I was tested for BRCA mutation and told if I was positive, I'd be encouraged to have my ovaries out.  But I was negative.  Ultimately, I had my ovaries out, BUT I am both ER+ and had a history of significant endometriosis on my R ovary.

Having an ooph will carry side effects -- you will be in early menopause with all that brings.

Personally, I'd think about this one long and hard and I'd need a good reason why it was recommended.

Hi Diana.... I hope your day has been fun with the family!

I am going to ask my BS about this on Monday. She may or may not know.. but she works with a team of cancer doctors. I will post what she tells me Monday!

Laura

Diana - I was hoping to get a hysterectomy and oopherectomy this summer when I must go in for open abdominal surgery to repair my large hernia. I saw an gyecologic oncologist who went over my scans and reports. His advice was "if it ain't broke don't fix it." I'm 54, post-menopausal, have an asymptomatic fibroid, tiny cysts on both ovaries, and an enlarged endometrium which is still within normal ranges. And yet the oncologist was very firm that it would be "unethical" to remove these organs. He even performed an endometrial biopsy on me just to try to find a reason, but it came back normal. I'm BRCA negative but I worry that once I stop taking Arimidex (in 5 more years) my body will start producing estrogen again. Even though I'm post-menopausal, I still was ER+ PR+ and Her2+++..........the estrogen came from other sources besides the ovaries, mostly my own body fat. I haven't lost any weight - so my worry is once the Arimidex is gone, the endometrium will start growing again. HOWEVER - I have decided to go along with the gynecologic oncologist's recommendation not to get a hysterectomy because he comes very highly recommended - and I'm afraid of more surgical complications (such as lack of bladder control - or another MRSA staph infection.) He told me with Pap smears and scans they can keep an eye on my uterus and cervix. I'm still not sure what I'll be doing about the ovaries - because ovarian cancer is very sneaky and they don't have reliable tests. He told me I'm at the same risk for getting ovarian cancer as the general population - does anyone know if this is true? I read somewhere that once you've been dx'd with BC - especially ER+ BC you run a HIGHER risk for getting gynecologic cancers, but perhaps that was only endometrial cancer? Maybe my risk for Ovarian cancer is really the same as the general population?

I hope you'll be able to get some good advice from your doctors Diane - especially with a gynecologic oncologist.

I've asked my onc several times about removal of ovaries and hysterectomy.  I've got ovarian cysts and fibroids.  She and my PCP do not see any benefit in removing them.  I also asked about removing my 'healthy' breast and she said I have a very small chance of getting cancer in that breast.  If I had my way, I'd have it all removed.  I'm PR-, ER+ and HER2+++.  I was 38 at the time of diagnosis and am BRCA neg.  After chemo and rads, I was started on Tamoxifen for the estrogen and will have completed 2 years of it come May.  I haven't had any real bad SE from the Tamox.  I have not had reconstruction, I'm not ready yet.  I may push for a prophylactic mast on my 'good' side when/if I get around to reconstruction.

As far as I know, I'm not osteopenic, but am going to ask about Zometa the next time I see my onc in March.  I'm not sure if she'll give it to me, and since it would be for 'off label' use (reduce chance of recurrance) I may have to pay for it out of pocket.  If it reduces the risk by as much as the research shows, it'll be worth it.

Zzap,

Your diagnosis and mine have similarities. I was wondering what your onc meant by saying the chance of a "new" breast cancer in the healthy breast was small. I asked my onc as well, and he said maybe a 20 - 30% lifetime chance. I take that as a small chance, 70 - 80% it won't happen. I have been wrestling with the idea of removing the healthy breast AND the ovaries. I feel stuck. any advice would be appreciated.

P.S. I tested neg for the BRCA genes

swimangel---Not to contradict your oncologist, but I've always read that the risk for ovarian cancer is doubled if there is a personal history of bc. (perhaps those articles were wrong?). I know my gyn was very concerned about the possibility of ovarian cancer when I had a large ovarian mass, due to my family history of bc and my high risk status (I have LCIS). Fortunately, everything turned out benign, but I had to have a TAH/BSO and immediate surgical menopause due to ovarian rupture. If you're very concerned, you could ask your gyn for a yearly transvaginal US (to monitor both the uterine lining AND the ovaries) and a CA-125 blood test.

Anne

Lexislove,

 It was almost 2 years ago that I my onc told me about the chances being small of a new cancer in the other breast.  I don't remember the exact number she gave me, but I remember it being very small, definately under 10%.  I wish I had taken notes that day because she gave me a bit of an explanation and after this much time has gone by, I don't remember her rationale.  Plus I was going through chemo at the time so I'll blame it on chemo-brain.  

 One thing I do remember is that she said that taking Tamoxifen would cut the risk in half of what it would have been otherwise.  I'm not sure about the other anti-hormonal drugs, but I would think they would have just as good, if not not a better effect on the odds.

You've given me a little more hope that maybe I can talk my onc into giving me Zometa even if my insurance doesn't cover it.  Maybe I could get the druc company to help me out.  Thanks for the tip.

Hi gals:

Swim angel, hi!  It's your surgery buddy!

My onc has given me a full blessing to have the oopharectomy/hysterectomy in March.  OB/GYN thinks it's a smart idea...reason being waaaaay too much estrogen.  I have had BC two times both highly estrogen ++++ BRAC negative, so we are now on Lupron to keep me in menopause (did your onc mention that 20-30% of all women start up again after chemo?) and I'm one of them.  Also the adrenal glands produce estrogen, so I am getting it all out.  And I tell you after just getting an MRI to check for the other girl for BC, I am so done with all this.  I think the stress it causes is so bad for me that getting everything out will only be a blessing.  I will never look back even once.  I will be getting a prophylactic mtxmy ASAP.  I'm just so over dealing with this.

I am fine with the bones.. any drug they give you, like lupron, arimidex, etc., will just mimic the same exact bone loss you'd get with menopause.  At 53, I am entitled to menopause, my body just has not cooperated.  I'm not afraid of surgery at all, but I am of a recurrence, and I'd feel like a ticking time bomb if I did not do this.  So for me, no choice at all, but a full speed ahead.  Each woman must weigh what is important to her.  To me, the risk of leaving things in there (esp. organs Im not using anymore) to get cancer, was more important than removing a possibly healthy organ that could develop cancer down the line.  They told me that with HER2Neu , which I had, that it's a qustion more of when, not if.  So I am taking a hard line.

That said, everyone has to make their own personal choice and I shall get off my soap box, that's just my two cents and story.

Hye Kim, I am at a loss, how come, something is missing!  I had my ovaries out on the 14th of February 2008 and within two weeks went into medical menopause.  Shaking, breathing problems, nausea and hot flashes every 6 minutes non stop, 24/7.  Then I was put on an SSRI, ie an antidepressant in small doses to stop hot flushes.  This made me feel like I was on an anaesthetic, I couldn't eat, nausea made me gag, hot flushes still there for about 10 hours per day, I was loosing a pound a day, getting weaker, still with breathing problems.  After four weeks waiting to adjust to the drug, still loosing a pound a day, I demanded to be given estrogen.  And now I am living in fear.  I am just amazed that so many people seem to be able to be fine. Christina xxx

I too am highly ER+ and had my ovaries out just two weeks ago now. I so far have not had any added menopausal symptoms.  I am still on the Tamoxifen until the prescription runs out and then am trying Arimidex.  I told my onc of my apprehensions on the Arimidex and she said most of her patients do fine and that most likely i should too.  She said if not there are other options.  So I came home from my most recent appt with a clean bill of health and 2 free packs of Arimidex and a coupon for a free 30 day supply......