Dr. recommends hysterectomy & ovary removal - worried about HT

julie775

I just had a double-mastecotomy & reconstructive surgery operation in December, and now my doctors are recommending that I have a hysterectomy & removal of ovaries. I am on tamoxifen now, and am told I would switch to femara after the surgery. I am worried about side effects of hormonal therapy. Anyone who's been through this, any positive or negative experiences or advise would be helpful.

Thank you.

PT63

Hi Julie

I am now 47 years old (dx at 43), 4 years post bilateral mastectomy and 3 years post hysterectomy with oopherectomy (ovary removal).  I did not have hormonal therapy after my hysterectomy because the reason I had the removal of the ovaries was to get rid of my estrogen since my tumor was highly estrogen sensitive. I have been on Tamoxifen for 4 years which is a different type of hormonal therapy than I think you are asking about.

I have had no outward side effects from the hysterectomy or Tamoxifen.  No hot flashes.  No facial hair.  No significant change in my quality of life.  BUT - I have been monitored for bone density over the past 3 years because a lack of estrogen contributes to bone loss. I just got my latest bone density back and it shows that I now have osteopenia which is the precursor to osteoporosis.  This means I will not be allowed to change to Femara or equivalent since they are known to cause even more bone loss and I will have to start on a biphosphonate to prevent more bone loss.

So even though I do not regret having the hysterectomy/oopherectomy because I believe that it will help prevent a recurrence in my type of breast cancer, I would suggest that anyone who does have their ovaries removed should be monitored for bone density changes.

mdg

I am worried about all of this.  I am 45 now and just did BLMX and am doing chemo next month.  I just keep waiting for them to tell me I need the rest of my female parts removed.  It's like they are waiting for that to be the icing on the cake after I complete chemo and reconstruction and think I can be done with this crap.  I also am strongly ER/PR+ and my body now seems to show no signs of menopause on it's own.   I can't imagine having even more surgery.   So does everyone ER/PR+ that is younger or pre-menopausal get told to have Ovaries out or hyterectomy?  

Member_of_the_Club

Please get a second opinion.  There doesn't seem to me to be any need to have such radical surgery, especially with a stage I cancer (plus, removing the uterus is not treatment at all for bc).  My cancer was more advanced than your's and i still have all my parts.  I did five years on tamoxifen.  I was highly er/pr+, and 42 at the time of diagnosis.  There are long term, permanent issues, with having these parts removed and I don't see any need for any of you to do this.

karen1956

There is a relation between ovarian and breast cancer, but not uteran cancer....I agree with MOTC...a 2nd opinion never hurts, especially if you have doubts....

I had bilat, chemo, rads, ooph and AI's....don't regret having my ovaries out, but I was 50 and perimenopausal....chemo stopped my periods and onc did not think it would come back due to my age, so for me it was peace of mind, one less thing to worry about....

Sherryc

I am 48 and had a hysterctomy 16 years ago.  Uterus only, still have my ovaries.  After being diag with bc asked my MO about the need to have my ovaries taken out.  His response was that I had the same chance of having recurrance of bc in my bones verses my ovaries unless I was BRCA + then that increases your chance of ovarian cancer.  So I did the BRCA test and was negative so I'll keep my ovaries.

rgiuff

I agree with MOTC.  Oophorectomy for a Stage 1 cancer sounds way too drastic!  And why the uterus too?  I was premenopausal, age 47at diagnosis and nobody on my team ever brought up the idea of having ovaries or uterus removed and I would have refused if they did, unless there was definitely cancer in those areas.  I didn't have chemo, just lumpectomy and radiation.  Now I've been on tamoxifen over 2 years and still have all my parts.

I feel that the effects of those surgeries would do more harm than good, when the organs are perfectly healthy.

nikola

I am considering removing my ovaries as I cannot take Tamoxifen. I am on zoladex inj right now to supress my ovaries. I can take zoladex inj for up to two years to get same effect as Tamoxifen but problem is after two years I can still get my period back and would end up getting them out then.

badgersp

Hi, A week away from my 36th birthday I was diagnosed with breast cancer, 3 months after losing my husband to small cell carcinoma of the lungs. I had a lumpectomy and was told I had Grade 3 invasive cancer but the lymph glands were clear Thank God. I underwent 6 months of chemo, 8 weeks of radiotherapy and was then advised to have my ovaries removed. I did the following year 3 months after all the treatment had finished. I then also started Arimidex.  The menopause seemed to kick in immediately and 3 years later I still have hot flushes but not sure if thats the Arimidex as I believe that is side affect. My cancer was hormone related so no HRT for me!! I put up with the hot flushes and look at it in the way - I am still alive, I don't know if it was absolutely neccessary I took the doctors advice and trust that I made the right decision.

Good Luck Girls x

doggylover

In Jan. 2010 I had a hysterectomy (uterus only) due to fibroids.  In Apr. of that year I was diagnosed with stage 1 ER+ Breast Cancer.  After lumpectomy, chemo and radiation, I had my ovaries out in Novermber.  I'm on Arimidex. And though I suspect my joint pain is a side effect, I don't regret having my ovaries out.  They were shot anyway from the chemo.  I never got hot flashes, though I did get night sweats.  I still get hot at night, but not as bad.  I was negative for the BRCA genes, but cancer once is enough for me.  I exercise a lot and that is what I recommend to anyone on Tamoxifen or Arimidex.  It will reduce bone loss, and I am certain my lack of serious side effects can be contributed to exercise as well.  Good luck on your decision.

Latte

interesdting that your onc recommends switching to femara. i am having an ooph next month ('m BRCA1+), but my onc wants me to do at least 2.5 yrs of tamoxifen before switching to an AI. She said research shows it is just as effective, and then I get the benefit of more years on HT in total.

2ns_Jenn

Hi Ladies -
I don't post much but spend a lot of time (probably much more than I should) browsing through the many threads on this board.  I mostly post when I have questions/concerns.

Today is a question...I am done with all my treatments and have been on Tamox since mid-November.  Saw my gyn last night for the first time since dx and he suggested that I would be a good candidate for an ooph & switching to AI.  I was surprised and also excited to think about no longer having periods (yep, I'm in the 1/3 group that has not stopped with the Tamox) so I don't know that I fully understood or asked why he thought it would be a good option for me.   He said I should discuss it with my MO but I won't be seeing him again for a while so I wanted to ask what others know about going this route and what your experiences have been. 

BTW, I am 45 and 95% ER+ (it sounded like those factored into the mix).

Have a great Friday!
Jenn

sandpiper

Jenn, if you aren't BRCA+ and don't have a family history of ov ca, and if you're doing well on tamox, I'm not aware of any compelling reason for you to have an ooph.  Maybe your gyn thinks he's going to do the procedure and is motivated by the fees he would get.

Annabella58

Jen, it may be that if you are still getting your period t hru tamoxifen (I did) that your tumor was exceptionally ER++.  Mine was, and i chose myself to get rid of the ovaries for that reason.  My cancer also came back, despite 5 years of tamoxifen.

Thankfully, when it did it was not in the nodes, tho it was invasive.  After 6 months of chemo, no rads (prior bc same breast) and mtxmy, I was put on Lupron for 6 months to keep me in "menopause" so that I could take arimidex.  Can't take tamoxifen after having had it once already so all that was left for me to do was to get arimidex and I had to be post menopausal to do so.  Lupron is like poison, really awful drug, so wanted to get off that ASAP.  Hence the oopharectomy.

The reason they take the uterus too, is that they usually do.  It very difficult to get at the ovaries without removing the uterus, and if you are taking tamoxifen, which gives an increased risk of uterine cancer as a SE, then they opt for the uterus as well.

NO regrets and now, not too many worries either.  Easy surgery!  I would ask your oncologist why the gyn would feel the ooph is a good idea (although it is now one of Sloan Ketterings first lines of defense btw, to have ovarian ablation done to reduce risk in ER+ ladies) and then bypass the gyn completely and go by what your onc says.  Sounds like it is the ER++ status, which was my reasoning also.  An OB/GYN is not an oncologist.

PM me if I can help you at all.

rachel5738

I had rad hyst last year with oopherectomy. I am on Tamoxifen as the Doc said due to my younger age--they will keep me on for a while due to potential bone issues etc. I haven't noticed any bad side effects to Tamoxifen. Doc said when I see him again in July--we may look at switching but in meantime--Tamoxifen.

rgiuff

Jenn, I've been on tamoxifen for almost 2-1/2 years, was diagnosed at 47, premenopausal, and still have my ovaries and would never have agreed to give them up even if it was suggested, which it wasn't.  Removing the ovaries won't just stop your periods.  It will put you into instant surgical menopause, which can be rough to go through.  This can also possibly lead to earlier bone loss and earlier cardiovascular issues, as well as impact on your sex life.  If you are still solidly premenopausal and your ovaries are removed, not only is there a drastic drop in estrogen levels, but also your progesterone and testosterone as well.  I would read about the beneficial effects that these hormones have in your body, even after menopause, before making any drastic decisions.  With a Stage 1 cancer, there is no reason to get this aggressive.  And once ovaries are gone, you can't replace them.  If the menopausal symptoms are really bad, remember you also will not be eligible to get any hormonal replacement to ease the effects, due to your BC history.  The AIs only offer a few percentage points over tamoxifen in preventing recurrence.  And the common side effects of them are also something to take into consideration.  I am going through natural menopause now, and it's hard enough to deal with, I couldn't imagine being thrust into it overnight.

Now some women do want to be super aggressive in treating BC, despite the side effects that this may cause.  And for them, every percentage point counts.  If that is your personality and you'd have more peace of mind that way, then if your Onc agrees, go for it.  But you can also go the ovarian suppression route, with lupron or zoladex to shut down your ovaries, and then still take an AI.  That way,. you can see what it feels like to be thrust into menopause and to take an AI and always have the option of reversing the process.

Member_of_the_Club

AIs increase your level of testosterone, because the prevent the conversion of testosterone into estrogen.

rockwell_girl

I'm getting a hysterectomy this week due to fibroids.  My oncoligist said only benifit of taking my overies is that I won't have to take tomoxifin.  Since I don't have bad side effects from tomoxifin I'm going to keep my overies.  Hoping for less side effects there : )

2ns_Jenn

Thanks ladies for all the good feedback.  There is definitely a lot to think about and consider so since it is not harming me to keep the ovaries, I will do my reseach and give careful consideration to making a decision!

Jenn

lbrewer

I made the same decision for myself and stuck with tamo.  I think there are lots of us out there.  My MOm and her ONC also stuck with tamo.  I honestly don't think women's bodies are meant to be absolutely devoid of estrogen.

Pgunz87

My current situation is similar, can you tell how you are faring in 2017? I am concerned about giving up my ovaries ( which stopped working with chemo and put me into early menopause) I had IDC , stage 1b ( 2mm tumor with a micromet)