Ovaries removed

Archanglerapheal - I am also ER/PR+. Did not do the BRCA test because insurance would not pay for it, My oncotype score was 11 which is low. I had a BMX. I have a sister who also had bc and five years later got ovarian cancer. She did the BRCA test and it came back negative. My docs all said that I need to have my ovaries out because of that especially since I also have bc and am extremely ER+. I took their advice and just had a complete hyster/ooph done six weeks ago. This was one surgery that I really didn't want to do but thought best I did. I mean what if I ended up with ovarian cancer - that would be so much worse. Someone on these boards called their ovaries "cancer bombs". I thought that was a good saying! BTW - I am 52 and was pre-menopausal.

I would have to agree with Pod---get a 2nd opinion before making any decisions. I had a TAH/BSO due to ruptured ovarian cysts. I regret not getting a 2nd opinion from a gyn onc--maybe my other ovary could've been saved, sparing me from the immediate surgical menopause. Going thru that along with recovery from major abdominal surgery was rough.  Over 5 years later, I still have hot flashes, night sweats, and achy/stiffness.

anne

adding to my favorites

I'm 50 and was in peri-menopause at diagnosis.  Now in chemopause.  Onc suggested I have ovaries & tubes removed due to ER+ status but I'm resisting.  No family or personal hx of problems with ovaries and certainly no desire for more surgery!  I agree that once they're gone, they're gone.

So I'll take tamoxifen and maybe the BRCA gene test and go from there.

Good luck with your decision!

Hi Emily,

 Thanks for the link.  My geneticist is also highly regarded.  I notice that the Sloan-Kettering site would put my risk at 10% or 1 in 10, I was told 20% or 1 in 5.  I think my geneticist is probably right.  Based on my a diagnosis of breast cancer under 40 alone my could be 1 in 10.  I had breast cancer at 36, my mother had breast cancer at 49 and my mother's sister died from ovarian cancer.  Also my father's mother died from breast cancer at 48, although she obviously was much younger when she contracted the disease.  There are other instances of breast and uterine cancer in my father's family.

I went through the all the genetic counselling prior to my BRCA testing, in a different state to where I saw this latest geneticist.  They mentioned some very high risks if I tested positive for either of the genes, one was higher than the other.  I believe it is the same test as in the US.  The reason we get an inconclusive result rather than a negative result if basically procedurally or even ideololical. The theory is that there are three possibilities: 1). You have the BRCA1 or 2 gene but they missed it 2).  You have  another genetic mutation that hasn't been discovered yet (highly plausible in some people who have strong family history but not BRCA1 or 2 mutation, or  3). you do not infact have a genetic mutation and the cluster of cancer in your family or diagnosis at a young age was purely random.

Anyway I am pretty confident that my risk would be about 20% based on what my doctor has said.  I still don't really want an ooph.  I have had a number of surgeries and chronic illnesses and I am really feeling a bit over all the medical intervention.  Although now that I know about this increased risk, only found out about 6 motnhs ago, I probably will have to give the whole issue some more serious thought.

Thanks for responding to my question.  I appreciate your answer as I ponder this issue.

Sandy

Well, Sandy, given your family history, I can see why the geneticist puts you in a higher risk category.  If that's the case, then your risk is as high as a BRCA 2 woman.  For me, that risk was too high, and I knew even as I was waiting for the BRCA results that if they were positive, I would have my ovaries removed.  I can't play with odds like that, not after a breast cancer dx at age 35, and 3 young kids to raise.

 So, I had a total hyst 2 1/2 weeks ago, and am feeling great so far.  The surgery was easy, compared to all the other things I've had done, and I'm not noticing any significant side effects yet.  Lord willing, I won't.  I know what you mean about being sick of all the procedures.  I've spent the last 2 years in and out of hospitals, and I almost felt like I could't bring myself to do the hyst b/c it was yet another thing after all the other junk I've been through.  But, I did it, and am very glad.

If you decide you want to proceed with surgery, I'd find out about not just an ooph, but a total hyst.  You may need to take some time to heal physically and emotionally before you proceed.  My docs were just pushing for me to have everything out before 40 (2 years from now), given my genetic status.

Good luck!

Hi

I have been on Lupron for a year now-- monthly shots.... no one on my medical team or in my second opinions thought I should take out my ovaries.... although, at the time, I was convinced I was going to take them out-- -but one onc said--it is permanent--you can always do it later.

However, I have NO history of bc in my family and  I seem to be tolerating the shots well.... I was pre-menopausal-- what I have noticed is the vaginal dryness, low libido-- and these are real challenges, but I suspect  I would have had them if I had an ooph..... I also think that the femara I am taking contributes to it. Butin general, I feel fine--- 

I am thinking about having estridol to deal with the dryness---- we'll see.....

I think this is a tough decision--- but I don't think my chances of ovarian cancer are any higher today than they were before-- or only slightly- and that was confirmed by two oncs..... so for now,I am hanging on to them

 However, I often wonder what will happen after I go off the shots--I think the shots sometimes end before the 5 year mark......

I was told that the effectiveness of Lupron was equal to an ooph...... I am hoping that is true!!!  My onc once said that I might get so annoyed by having the monthly shot that I might just take out the ovaries---- for now, that 5 minute appointment on my way to work is not too onerous.  They also have  3 months shot that I might move to next year...

I vote to keep the ovaries, try the lupron and see what happens....

Hi Emily,

We are very similar.  I am 42 now, but I was 36 when I was diagnosed.  I have twin boys and they were 4 years old at the time.  I appreciate your comments about having kids to raise.

I didn't have a reconstruction for various reasons, but mainly because kids are not advised after a tram flap.  I still wanted another baby.  I had my BRCA about six months after diagnosis.  It took a long time to get the results.  However I have an auto-imune disease (psoriatic arthritis) and last year my new rheumatoligist wanted me to see a geneticist because she was concerned about the cancer risk of some medication I was taking.  This is when I found out about the 20% risk.  In some ways I am really angry to have been forced into finding out about this risk.  In some ways I would have rather not known.  However now that I do I have to think about it.  However in the meantime I had a thyroid cancer scare and had half my thyroid removed (benign) last September.  This has probably caused me to delay confronting the ooph issue.  I know what you mean about not wanting to face these issues after all the "junk" you have been through.  Toss my mother's death into the mix and it has been such a fun six years....NOT.

Anyway Emily I sincerely hope you continue to do well after your surgery.  If you don't mind I may chat to you again down the track about your experience. 

I hope you continue to stay well.

Sandy

P.S.  We don't have Lupron in Australia, for early stage as far as I am aware.

Questions Questions Questions and LOVE TO ALL!

Why can't I find anything on google about Lupron for breast cancer? Has everyone had a density scan prior (I did not am am ticked now)...AND has anyone been on it for over 6 months (the Lupron)?  I just saw another post saying it is not reccomended for a longer periods of time.  Am I getting too harsh with my drs?  I am like, if there is a side-effect---like lets say bone loss, KEEP AN EYE ON ME!!! Check me out perioidcally, what the heck?  I also feel like I was tricked into Lupron, since I am peri-paused and NEVER said YES to Arimidex.  I was on it once before and not only did it deibiltate me, BUT I think I may be immune to it (I got the cancer again.)  ALSO!!!!What do you all take for the bone pain/joint pains??? Thanks, terri

Hi Aussieched.

I am sorry that you have had such a rough ride.  I am not sure on the ooph versus chemo thing but with the size of your tumour and positive node, I would have thought chemo should have been offered.  I know it is easy to say but you can't change what has passed so in some ways you just have to accept things as they are.  However I don't think you should have to accept the care you are getting.  I read one of your other posts after reading this one, so I know you have private cover.  If you are not happy with your oncologist, get another one.  Seriously you need someone who listens to you. 

As far as testing goes this was my experience.  I lived in Perth when I was diagnosed six years ago.  I was given a bone scan and a contrast enhanced abdominal CT which checked liver, lungs and pelvic organs (ovaries etc).  As far as I am aware this is standard procedure for staging the cancer at diagnosis here in Australia.  Also I have had CT and a bone scan when I have had symptoms crop up.  All clear thankfully.  I think even in the US they do not do routine scans as part of follow up.  I have been on this board for five years and that is my understanding of what happens most of the time in the United States. 

If you have concerns and you want a bone scan, ask for it.  If your onc won't give you one, ask your GP.  If this doesn't work get new doctors.  I am in Brisbane now, but I had 18 months in Hobart (due to my mother's death from cancer) before moving here.  I am not sure where you are but hopefully you are somewhere where you can get a new oncologist if that is what you need to do.

All the best and feel free to PM me any time if you want to chat.

Sandy

Archangel, I was also 47 at diagnosis 2 years ago.  Also ER/PR+. premenopausal.  Nobody ever mentioned an ooph and no way would I have said yes to that.  Ovaries can't be replaced and they are known to have benefits to our bodies even after menopause.  To me, this is a horrifying treatment, similar to removing the testicles from  a male.   If I were at known high risk for Ovarian Ca or had ovarian ca, then of course, it would be a different story.  Even then, I would have a rough time accepting it, but I'd do what I had to do to stay alive.

Just wondering why that was recommended for your case? Do you have a more advanced stage of cancer than me?  I was Stage 1.  I also had lumpectomy and radiation and am now on tamoxifen.

I have been on lupron for a year with femara-- I could not take tamoxifen and I was pre-menopausal.  I had a bone density scan when I started and just had another one--- my bone density is still normal, but there has been some loss.  Have to talk with onc in November about this-- drinking milk and taking calcium.... 

 Not sure how long to stay on lupron-- I was still ovulating and I was just 48 at dx.... 

I thought about taking out the ovaries, but it really seemed like overkill to me..... getting  a shot once a month is something I can stop--but I couldn't bring back my ovaries....