oophorectomy, long term side effects, quality of life

tbayer

I am done with active treatment for a breast cancer reoccurence. 1st time around it was mastectomy and then tamoxifen, which I stopped after 4mo due to side effects. 3 years later, 2nd diagnosis treated with excision/biopsies, chemo, radiation.

So now my MO is leaning towards oophorectomy followed up with aromatase inhibitor. I am 45, in menopause from chemo since 12/14. Not sure if period will come back, a couple friends my age have had their period come back and are on Tamoxifen now.

I am very concerned about the long term effects I read about oophorectomy...early onset dementia, increased rate/onet of heart disease, anxiety/depression, advanced bone loss...to name a few. I know these aren't a given for everyone, however quality of life is a big concern of mine. Also, I have this visceral emotional reaction from the possibility of having more female parts taken, part of my femininity taken.

It's balancing the decision of probability of cancer return vs. quality of life, perhaps.

Any experiences with oophorectomy or suggestions from anyone having been in this decision position are appreciated!

Tori

YoungTurkNYC

Since you had a recurrence, it may make sense to get that oophorectomy (entirely my personal opinion).  I did have the oophorectomy, and not only was it the easiest surgery I had (up and about in 2 days) but had minimal side effects.  (I had already gone through "chemopause" during chemotherapy so by the time I got to oophorectomy, there were no side effects).  I was 40 when diagnosed, and 41 when I had my oophorectomy.

My mom was diagnosed (at age 45) with a very small stage 1 cancer for which she was not recommended chemo, and she dropped the anti-hormonals due to side effects.  She had a very small cancer with no lymph node involvement. Her first recurrence was local and was taken care of immediately.  At that time, she was told she would never have to worry about cancer again because the local recurrence was extremely small.  Her second recurrence was metastatic to the bone - Stage IV.  She has been living with Stage IV disease for over 14 years now, but I can tell you that the side effects and the pain she has to endure are getting progressively worse.  Bone mets can be very painful, and she has to wear a morphine patch at all times. She regrets that she has not done chemo or anti-hormonals when she had the chance.  When she went through her first two bouts of cancer, my mother had not realized (nor was she explained by the doctors) that the cancer cells could come off the tumor and start circulating in her bloodstream even with no lymph node involvement.  The chemo and the anti-hormonals kill these stray cells which have come off the tumor and started circulating in your bloodstream.  A single cell that has gone into the bloodstream has the potential of being able to cause a recurrence somewhere else in your body if the conditions are right.  That is why we endure the chemo and/or anti-hormonals even if we have no lymph node involvement or even when our cancers were caught "early". Obviously, even with these systemic treatments there is no guarantee that the cancer will not come back.  Once the cancer spreads to another part of the body and becomes Stage IV, it currently cannot be cured (although there are many promising drugs in the pipeline) and has to be managed as a chronic disease.  Some people are very fortunate and are able to manage this disease and live for a long time with Stage IV, some others are not as fortunate and may succumb to the Stage IV disease within 2-5 years.  It all depends on the individual and how the individual responds to treatment.  I just wanted to let you know what my mother was not told (and didd not know) at the time she was making her decisions about hormonal therapy.  Perhaps you already knew this, and had already factored it into your decision.  Whatever your decision, I wish you the absolute best, and I hope you never have to face recurrence again.

tbayer

Thank you YoungTurkNYC! All of your points are well said.

My 1st occurrence was ER+/PR+/HER2-, BRCA-, oncotype low, no lymp/sentinel node involved. 2nd all the same except oncotype in high midrange. I feel like both have been very isolated but there is no 100% guarantee.

I'd like to think with chemo and radiation there's not a chemo cell in my body. I thought that the 1st time around with mastectomy and clean margins however there was obviously a cell or two on that side that formed a small pea sized lump in skin of that breast to become my recurrence.

Thanks for your post!

YoungTurkNYC

Dear tbayer,

The Oncotype score ASSUMES that you will have 5 years of anti-hormonals (tamoxifen or AI).  If you do not take the anti-hormonals, your recurrence rate (approximately) doubles.

YoungTurkNYC

I hope the chemo killed every one of the cancer cells which may have escaped.

 

peggy_j

Sorry to hear about your recurrence. Nobody wants that.

My understanding is that most studies look at pre-meno women who remove their ovaries. This can include women who remove their ovaries in their mid-30s and start menopause 15 years early. So I'm not sure how closely those results apply if you're already in menopause/chemopause. Unfortunately, you may already be experiencing some of the SEs you mentioned (i.e. most women have increased bone loss after menopause). You might want to ask your MO (and gyno?) if she/he has an opinion on the increased risk for you.

To state an obvious advantage to the oophm: if you remove your ovaries your risk of ovarian cancer becomes almost 0. (there's still some small risk of cancer in the surrounding tissue). As you may know, BC survivors are at increased risk for ovarian cancer (maybe 5x the risk? I can't remember. But I do remember reading the obit of a woman who survived BC when she was young and died of ovarian cancer many years later) FWIW, last year I had a funny-looking cyst on my ovary and had one ovary and both tubes removed. I kept one ovary because I didn't want to go through instant menopause. (I was 49 and peri-menopausal) Six months later my mom was Dx'd with ovarian cancer, so now I'm looking at another surgery to remove that last ovary. Unfortunately, ovarian cancer can be hard to detect and most cases that are found are advanced and the long-term prognosis isn't very good. (worse than YoungTurk's Mom's stage 4 BC prognosis)

Sorry for being Debbie Downer here. I find this kind of decision making to be difficult. Best of luck are you make your decision.

lbrewer

personally I would ask for genetic testing before I had the ooph. BC survivors may have an elevated risk but part of that is due to the fact that many bc survivors have a genetic condition that predisposes them to the risk and it is not known, I have a genetic predisposition (Lynch syndrome) that is linked both to bc and ovarian. I had the ooph because of it. I would not have done it if my genetic test was negative. Even now I am not sure it was worth it.

peggy_j

FWIW, I was reading a book yesterday on hysterectomy (written by a doctor) and it said that today many gynos who do hysterectomies recommend removing the ovaries if a patient is 45 or older, and it's highly recommended if the woman is post-menopausal. I know you're not looking at having a hysterectomy but it made me think that the benefit of keeping ovaries might be smaller if you're already in chemopause. I bet your gyno and MO have opinions on this.

BTW, if you choose to do genetic testing, there are now gene panel tests available too. From the bit I read, none have as high a correlation as the BRCA genes but....it seems the more we learn about genetics, the more links we find. oy!

I always find it stressful to make these types of decision. Good luck and know that what you choose will be the right choice for you.

pebee

I too am weighing this decision. I was stage iib, 2/25 lymph nodes and I was premenopausal when I was diagnosed. When I started treatment, I had 1 period and then nothing.

I have tried to take tamoxifen. I have started and stopped it four times in the last four years - I have about 30.5 months total on it. I have had every side effect, physical, mental, and emotional in every part of the body. I have tried everything on the tamoxifen thread from medications for side effects, specific brands, dose splits and the like.

Now, when I go off of it, my periods return. Apparently I am still pumping out estrogen. I am going on 51, and no one can tell me anything when menopause will happen.

My doctors want me to have the surgery. However, everyone that I know who has had the surgery has taken hormones afterwards - I can't. And, there is no answer about how long I will be on the AI - some say life even though there is no long term data on these drugs. What are the long term effects of someone who took Tamoxifen for 5 years, 20 years ago. And, what are the affects to the body for taking an AI for such a long time.

Any thoughts about how to make this decision are appreciated. I am struggling with it as well.

YoungTurkNYC

pebee,

I was diagnosed at age 40, and had the ooph at 41 - and despite my young age, I had minimal side effects. I am on Femara from which I also currently have minimal side effects. I just wanted to let you know what my experience was with an ooph but I do understand that not everyone reacts the same way.  By the way, I did not have the ooph due to BRCA status - I am BRCA negative.  I just had a gut feeling that ovarian suppression plus an AI would be more effective than tamoxifen for a premenopausal woman, and for my risk level, the SOFT trial has provided the answer that this was in fact the case. In addition, due to a blood clot I had many years ago, my MO was not comfortable putting me on Tamoxifen, and so, for me, it ended up being a no-brainer to get the ooph.  Did you have chemo in your treatment plan?

tbayer

Ladies,

Thank you for everyone's input!

I just got back from GYN appt. This is the 2nd time I've spoken with her about oophorectomy and each time she leans towards a total hysteretomy. She didn't give me any medical reason why hysterecomty over only ooph other than that's kind of standard practice. She would do ooph if I wanted but doesn't see any reason to leave uterus.

My MO recommended just ooph and says there's no significant reason for me to have hysterectomy, my chances of uterine cancer are not significantly greater than woman withough breast ca history, larger procedure doing hysterectomy.

Any thoughts? I went in to discuss ooph and came out signed up for hysterectomy a month from now but why take something else out if I don't need to?

Thanks,

Tori

Mommato3

tbayer, I went to my GYN to discuss an ooph and she recommended a total hysterectomy too. Her reasoning was because its only purpose now was being a cancer catcher. She will do just an ooph if I really want to. My MO was fine with whatever I decided.

I'm not totally comfortable with having a full hysterectomy. I have until Sept/Oct to make my final decision but I'm leaning towards just having an ooph.

lbrewer

I think the main effect comes from having the ooph. There is really little effect from having the rest done. My surgery itself was a breeze...only 3 little scars less tha 1/4 inch. The effects of the ooph are another story!

farmerlucy

I had an ooph about a month ago. I spoke to a gyn onc and he said if the uterus is proven benign via D&C there is no reason to remove it. I was having irregular bleeding on Tamoxifen. I had the ooph and D&c at the same time. Recovery was a snap and all was B9. Having big time HFs. I'm 54.

tbayer

I am heavily leaning towards just the ooph. My hot flashes, night sweats are just starting to subside from chemo...I did it once, I can do it again!

The thing that bothers me is that my GYN, (she is new to me/I'm new to the area but my MO who I really like reommended her), is that she said the ooph is " out of the box", that the hysterectomy is just the standard practice when she went to school/residency/this area.

I'd like to think that each pt's treatment might be thought of "outside the box"/individually tailored.

I have a call in to my MO just to confirm one more time his opinion.

I'm done having my female parts cut /taken. Yes, I want to be safe and I want prevention above anything but there's no signs that my uterus should be taken.

Thanks!!!

farmerlucy

I have heard from several reliable sources that unlike ovarian cancer, uterine cancer is not subtle, and generally the cure is a hysterectomy. My gyn's nurse said they didn't do the ooph d&c so I made an appt w my gyn and she laid out my options from doing nothing to just a D&C to the ooph d&c to the full hyster ooph. My deciding factor was the possibility of incontinence w a full hyster. To me that would be worse than the Mx

alaskamama

Thank you for this discussion. I personally am looking forward to getting my oophorectomy as soon as I am able (can't do it until I can wean off prednisone ... that's another story). I was diagnosed at 42, and just turned 44.I do not appear to have any cancer genes but due to my high risk of recurrence (lots of positive nodes and close margins) my med onc wanted me on AI instead of tamoxifen. My ovaries are going strong so I have to take Lupron to suppress ovarian function (you have to be menopausal to take AIs). I'd rather have surgery than 10-plus years of Lupron injections. My doc did not feel I needed to have a hysterectomy but does want my ovaries and fallopian tubes removed to suppress as much estrogen as possible.

I think it's very personal how you feel about having body parts removed. I feel ok about it. It wasn't terribly hard for me to lose my breast, all things considered. But ultimately you are the one who knows best how you feel. Good luck!

SuC

I had a laparoscopic assisted vaginal hysterectomy and bilateral oopherectomies 4 months ago. I felt back to normal by 2 weeks and haven't looked back. I decided to have the hysterectomy as well so I could lose any concerns about uterine cancer (I am on tamoxifen) and would never have to have a Pap smear again. Without ovaries there isn't a lot of point in having a uterus as far as I can see.

YoungTurkNYC

I am very curious about this conversation since my gynecological oncologist did not even make a case for a hysterectomy just an oophorectomy.  I had never heard of a uterus being only a "cancer catcher" if left behind. This guy was at the top of his field at Columbia University (since left) and he is not just an ob/gyn, he deals with gynecological cancers on a daily basis so I am now curious why I was not really offered a hysterectomy. I actually remember asking about it, and he said "no need" or something to that effect and did not even mention it again.

amylsp

I'm currently trying to decide between ooph and lupron shots so I can go on an AI. But in the past I've spoken with my Gyno about hysterectomy as I have very large fibroids for years. According to my Gyno and research I have done myself, the uterus, bladder, bowel/rectum, and the vagina itself all depend on one another for support. As women age, and especially after menopause, we become more susceptible to the structures holding these pelvic organs in place to loosen causing prolapse. Removal of any of these organs will significantly increase the chance of prolapse in the remaining organs. This is frightening to me as one of my good friends has suffered from prolapse for the past few years and has had significant complications from the mesh surgery that followed. And she didn't even have a hysterectomy. So in my mind, hysterectomy is not something to consider without really weighing the pros and the cons. Just my 2 cents.

peggy_j

Does anyone have a good source that discusses the risk factor for prolapse after a hysterectomy? I read a couple of reports on PubMed and they seem to suggest that pelvic organ prolapse can be higher *if there are related problems prior to surgery.* I also read on WebMD that many women experience prolapse even without a hysterectomy. I'm trying to understand the increase in risk by removing the uterus if everything else is healthy.

If anecdotal info is helpful, I know several women who had hysterectomies 30-40 years ago (when they were in their 30s) and they never had any problems at all. I also know a couple women who took tamox for 5 years and then needed a hysterectomy a couple years later--one for uterine cancer and one for a benign condition.

tbayer

Hi ladies!

So, I had an oophoorectomy 5wks ago. All went well, thankfully! I had gotten a 2nd opinion and felt much more comfortable with the new GYN who saw no reason for total hysterectomy. My MO initially suggested the oophorectomy however the 1st GYN I saw kept pushing hysterectomy with little to back her reasoning.

Overall, I have been feeling fine. Hot flashes/night sweats have been much gentler than during chemopause. New since the surgery is that I am waking ever morning before sun up, a little hot and have to go to the bathroom even if I limit liquids couple hours before sleep?!? Annoying.

After surgery, I took about 2 wks of going very easy, then eased back into my normal routine week 3 and week 4 I felt comfortable to be lifting ( groceries, vacuum,etc.).

This past week ( post op wk4), I've been feeling alittle irritable and angsty. Fatigue late afternoon into evening - not feeling like fixing dinner, cereal is fine by me:) And, last night, I just lost it around dinner time. I allowed myself to get into bed 7pm, have a good cry and sleep until 7am. Clearly I as tired. My supportive husband did dishes and put kids to bed!

I'm thinking estrogen/progesterone has slowly tapered out of my system over the past month and now I'm feeling the effects. When I saw my MO 2 wks ago, he suggested I wait another couple wks to start the aromatase inhibitor, let my body adjust to the oophorectomy before completing turing off the hormones.

What symptoms a month or two out from oophorectomy have people experienced?

Thank you!

I feel grateful to have such a resource as Breastcancer.org.

Tori

farmerlucy

I'm almost four months out from ooph. I had fearsome HF at first but they are better now. About a month in I started feeling like I was falling into a depression so I bump up the Effexor to 75 mg. the most troublesome thing is endometrial bleeding - still! I saw my gyn last week and she said there is no way I have uterine cancer since she scraped the heck out of my uterus at the D&C the same time as the Ooph. She think everything is still adjusting to stopping Tamoxifen and the

CAMommy

I had a BSO two years ago to reduce my risk of BC.... Didn't quite work out that way. But the BSO was easy, I had a da Vinci hysterectomy/BSO and it was very easy. Outpatient, and short recovery. I have had no real issues with it. I was 44 at the time. I was on a low dose of estrogen but when I got my dx for this mess I stopped cold turkey. No real issues. I don't miss my ovaries at all. I have hot flashes once in awhile and my mood is actually better than before. You never know how you will react. But it is irreversible.

tbayer

Camommy, sorry to hear of your bc dx:( . I've found this has been such a supportive site. So nice to know one's not alone. It's cool to post a question and minutes /hours later women from all over may have responded with their experience!

My Gyn mentioned Effexor for the hotflashes and the "fog" her patients report, however I'm already on low dose of Lexapro for anxiety /depression. I guess we'll discuss when I see her next week.

614

I had my oophorectomy in December 2014 because I needed to be medically induced into menopause so that I could take arimidex/anastrazole (AI's).  I was pre-menopausal when I was diagnosed with bc last year, and a blood test showed that I could not metabolize tamoxifen.  I took the zoladex shots for 3 months to suppress my ovaries but I did not want to continue taking an extra medicine.  The oophorectomy was a no brainer for me because I needed to be in menopause and I did not want to worry about ovarian cancer.  The oophorectomy was better for me than years of zoladex shots.

My gynecologist never suggested a hysterectomy.  I did not even ask my gynecologist about the hysterectomy because at the time, my insurance company was refusing to pay for my breast surgery stating that it was cosmetic.  I was fighting breast cancer and my insurance company at the same time.  That was fun! lol. I did not want to even attempt a surgery that my doctor did not recommend for fear of more difficulties with my insurance company.  Therefore, I only had an oophorectomy and not a total/radical hysterectomy. Luckily, my insurance company finally paid for my breast surgery.  (I had to have a breast reduction and a breast lift so that I would not be deformed from the double lumpectomy that I had. My breast surgeon removed about 12 cm's of tissue so I was told that my nipples would not be even and that the size of my breasts would not match. The breast reduction and breast lift was medically necessary.) My breasts do look gorgeous now!

Aside from being put into menopause (which was the point of the surgery), I have had absolutely no side effects at all from the oophorectomy.  I also have no worry about the possibility of ovarian cancer which is a huge relief to me. The surgery was so easy.  I was up and around the next day and I felt absolutely fine.  I did not need pain meds.  I am so glad that I had the oophorectomy.  It was much better for me than taking the zoladex along with the arimidex.  I like being on only 1 medication rather than 2.  I already have 2 children and I was not planning to have any more so the oophorectomy was not a real concern for me.

Good luck with your decision. I wish you the best.

speace

Hi CAmommy, I am having a total hysterectomy on Aug 31 also being done by the robot, I was wondering how your recovery has gone so far, and did you have any bleeding or discharge of any type afterwords? Thanks , Sandy

speace

1. Hello, I am scheduled for my hysterectomy on Aug 31, did you continue to take your tamoxifen before and after the surgery or did you have to stop it? Thanks Sandy

SuC

I took my tamoxifen to the day before surgery and from day 1 afterwards. I have chosen to stay on tamoxifen rather than switch to an AI as I think the side effect profile is far better and the potential difference in benefits are small. We have to remember that we can die from or suffer from other conditions not just breast cancer. At my age I would find the risks of osteoporosis far too high. Spontaneous fractures seperate to bone mets are still associated with an increased risk of death. I will keep my bone density with tamoxifen far better and will do 10 years so on it. Currently 2 years done, 8 to go.

tbayer

I had my 6wk check up post oophorectomy...yeah!

Overall, things are well. Hot flashes not as bad as "chemopause" and no night sweats. Mood a little low, angsty the past 2wks .

Effexor - my GYN mentioned again today for hot flashes and mood. I feel things are manageable now however what are people's experience with Effexor post opporectomy?

Also, I have this weird kind of metallic, like I've burned my tongue feel and taste, slightly white on sides of tongue. Anyone experience this? Feels similar to mouth changes I had with chemo.

Thanks!!!

Tori

trying2staypositive7

Hi tbayer! Thanks for starting this thread. I'm scheduled to have my ooph in December. I am terrified of the side effects! Reading through the thread has helped calm me a little but the fear of unknown is still there! Anyway, I'm glad that your surgery was a success. I hope that you continue to heal and the hot flashes dissipate.-)