Remove remaining ovary??

etnasgrl

Not really too sure where to put this.....I hope this is an okay spot, lol!

One year after my diagnosis, I had a hysterectomy. Tamoxifen was causing my uterine fibroids to grow out of control and a hysterectomy was my best option. I had my ovaries remain, as I did not want to go through instant menopause. (I was 42 when I had my hysterectomy.) 
One year after the hysterectomy, I had to have emergency surgery to remove my left ovary due to an ovarian torsion. (If you don't know what that is, it's when a cyst on your ovary grows so large that it causes the ovary to twist. In my case, it caused my ovary to not only twist, but also to rupture! Absolute horrible pain! I was bleeding internally and my OBGYN had told if I had waited just an hour more to get to the ER, I would have died!) Both my OBGYN and oncologist told me the Tamoxifen caused this to happen.
Fast forward to today. I've been having extreme right pelvic pain and was convinced that I had a cyst on my remaining ovary. I saw my OBGYN today and she did an ultrasound. Yup, it's a cyst. The size of a softball. *Sigh*
So, here are my options.....
1) Do nothing and wait for the cyst to either dissolve on it's own or continue to grow until I have another torsion. Yea, this option is NOT recommended. 
2) Have surgery to remove the cyst.
3) Have surgery to remove the cyst and the ovary.

If I remove only the cyst, the chances of another cyst growing in it's place is VERY likely and I will be right back to the same situation I am in now. If I remove the cyst and the ovary, I will be thrown into instant menopause. I suffered HORRIBLY with PMS in my 20's and 30's. Since being on Tamoxifen, those mood swings have totally disappeared. I can NOT imagine going through those awful mood swings again because of menopause. (And I can not take HRT to help relieve that!) I'm also very concerned about weight gain. I am overweight and in the process of losing weight. I have lost 35 pounds so far, (I joined Weight Watchers), and still have another 50 to go. It's been slow going and hard to get the weight off.....I know menopause will only make it that much harder.

So, the long and the short is, I do not know what to do! If I decide to remove the ovary with the cyst, I will NOT take aromatase inhibitors. I've suffered with a wide array of side effects from Tamoxifen, I will not put my body through any more of that nonsense. So far, I have been on Tamoxifen for 3 years. I am willing to put in another 2, but then I'm done. I'll be done with Tamoxifen before that if I remove this ovary. So, that's another thing to think about. Since I will refuse the aromatase inhibitor, that will leave me with no further protection to prevent a recurrence. Yes, I know that is my choice.....but it still factors into my decision.
I'm interested to hear your opinion. What would YOU do in this situation and why??

star2017

How frustrating, etnasgrl! So sorry you're going through this.

I'm 38 and had both ovaries removed two weeks ago. So far, no signs of menopause (knock on wood!).

The fact that your mood swings stop might mean your hormones are already suppressed a bit by tamoxifen or other treatments. Are you regularly menstruating?

Do you have any genetic risk of ovarian cancer? I didn't know the tamoxifen would cause problems with the ovaries.

Also just a heads up, I think you can continue tamoxifen even after the ovaries are removed. The AI are shown to be slightly more effective, but I believe you can continue on tamoxifen if it suits you better. If I don't react well to the AI (haven't tried yet), I'm planning on sticking with tamoxifen, which I've tolerated well overall.

What do your doctors recommend?

MexicoHeather

Yes. Just say bye to the ovary. Sorry you had to suffer.

MexicoHeather

1. Yes. Just say bye to the ovary. Sorry you had to suffer.

FarAwayToo

Ovarian torsion is scary.

I had a large cyst on my right ovary when I was 20, right before I got pregnant with my first child. The cyst was removed during my C-section with most of my ovary. I had functional cysts on my left ovary throughout my life, but they were never large. We would monitor them for a month or so, and they would go away. I was told this was normal, they were "funcitonal" cysts.

I was diagnosed with BC at 40, and after chemo and surgery my MO suggested ovarian suppression and AI. I read a lot about Tamoxifen vs OS + AI in premenopausal women and I made the decision to take lupron shots for ovarian suppression (started in February of this year) and started on letrozole in April. Overall, my menopausal symptoms were just a little more severe than what I had during chemo (more severe hot flashes and I started to experience joint pain - not too bad but enough that I could notice). My only problem is that I'm a worry wart and I tend to question everything. I was afraid of incomplete ovarian suppression, so in August I had my ovaries removed. Was told there was no right ovary left, only scar tissue.

I honestly don't know what I would do in your situation. Even though I think lupron was working for me (I had a sensitive estrogen blood test and it was virtually undetectable), I went through 6-7 weeks of severe hot flashes, dizzy spells and tremendous fatigue after oophorectomy. It was like I was thrown against the menopausal wall. I don't know if my ovary was still producing something while I was on Lupron, or maybe the fatigue was the result of having double surgery and not having enough time to recover - I had oopherctomy at the same time as my exchange surgery and went back to work after 4 days. Or maybe it was just the duration of time my body was without estrogen, my MO says that in those who are going through chemical or surgical menopause symptoms usually peak between 9 and 18 months. Anyway, I don't regret removing the ovary and tubes (yes, if you decide to remove the ovaries definitely remove the tubes, because ovarian cancer sometimes originates in the tubes). I was considered high risk for recurrence, and had chemo. SOFT and TEXT trials show that women in my category benefit from OS + AI.

Looking at your stats, you are probably not one of those pre-menopausal women, so I think your decision to not take AIs would be supported by an oncologist. So you just have to weigh the risks and benefits of menopause vs potential for ovarian torsion.

farmerlucy

I had both removed at 55, premenopausal. After trying an AI I went back to Tamoxifen. Even at 55 the ooph was tough. If your cyst was smaller I might be inclined to just remove it, but at softball size, wow, it seems like your body likes to make them. Can they remove that laparoscopically? What about a second opinion?

LaughingGull

Wow, sounds like you are really suffering with Tamoxifen.

I would totally remove that ovary. I had ooph at 48 (diagnosed at 47, premenstrual) and removing my ovaries didn’t give me any more menopausal symptoms beyond what I had due to chemo. No weight gain. No insomnia. Sounds like you are doing a great job with your weight. I have read here from others on your same situation (taking charge of their weight in the same way you are reporting) that ooph did not interfere with their weight loss.

Also, don’t assume you will be worse off with AI. Many of us have minimal side effects on AI and you have certainly gone through hell with Tamo. And as others say, you can be on tamo while post menopausal instead of taking AI.Take a look at the thread “doing well with AI”.

Best of luck!

etnasgrl

Thank you so much for all the responses!! 

Star2017.....No, I am not menstruating anymore. I had a hysterectomy. And no, no genetic risk of ovarian cancer. All my genetic tests came back negative. My OBGYN and my oncologist both suggest removing the ovary, with the cyst, but are leaving the decision up to me. I fully understand WHY they are suggesting that, but they don't have to live in my body once it's done, lol!

FarAwayToo…..my oncologist has told that if I remove the ovary, he will put me on AI's and is advising me that I take them. He does NOT support my decision to not take them if I do remove the ovary. He said given my young age at diagnosis, I need to be on SOMETHING. (But, that's a conversation for another day, lol!)

FarmerLucy…..Yes, they can remove everything laparoscopically. (My hysterectomy and other ovary removal was done the same way.) I never had problems with cysts prior to Tamoxifen. Apparently, my body likes to make them when it takes Tamoxifen, lol! As for a second opinion, I really don't need one. My OBGYN is right on the money. She did the ultrasound, saw and measured the cyst and gave me her professional opinion, which my oncologist 100% agrees with. It just comes down to me making the right decision for me. And honestly.....I just don't know what that is! 

LaughingGull…..Yes, I know you are right. I guess I am just SO hesitant to try AI's given my joyful time with Tamoxifen, lol! And I have heard of post menopausal women taking Tamoxifen, so that is something I can ask my oncologist about. I will absolutely check out the "Doing Well With AI" thread. Thanks for letting me know about it!

star2017

the transition may be smooth as it’s possoble you’re already suppressing hormones. I think in your position I would have the ovary removed but I understand the fears regarding menopause. I was scared too.

Definitely ask your doctor about staying on tamoxifen rather than starting an AI.

All the best!

LeesaD

I had my ooph just a year ago at age 49. I too had suffered severe PMS and all hormonal fluctuations prior to my diagnosis. Chemo started me in menopause and then I continued it with zoladex suppression shots for four months and then finally had the ooph. I feel so much better post menopause. No more food cravings, no hormonal ups and downs, no mood swings, no weight gain. I can really see now how the hormones really effected me prior. I have the occasional hot flash and that is it. I started AI’s a little over a year ago and only complaint is joint pain. I’ve actually lost 15 lbs since I started and my cholesterol has dropped significantly while on AI’s. So I guess what I’m saying is not everyone experiences the bad side effects. Best of luck in your decision!

FarAwayToo

etnasgrl, are you planning to continue taking Tamoxifen if you remove the ovary? What I meant about your MO not objecting to not taking AI is that for you continue on Tamoxifen offers (statistically) as much protection as taking an AI, assuming your ovaries are not functioning.

To add to LeesaD list of menopause advantages: I no longer have migraines that I used to get like clockwork in the week leading up to my period, my skin is clear and no munchies. I used to be extremely hungry all the time for at least 10 days before each period. I'm not sure if you have any of this anyway, because you are no longer menstruating. Also, I would give anything to get my migraines back if that meant I never had BC and I could enjoy sex again . I'm having issues with vaginal dryness and loss of sex drive, and that's in addition to sweat drenching hot fleshes, joint pain and occasional dizziness.

etnasgrl

FarAwayToo…...My oncologist wants me to switch to an AI if I remove the ovary because I have had other side effects from Tamoxifen that have made life a bit unpleasant. He wants me off Tamoxifen completely, and at first suggested the shots to shut down my ovaries, so he could take me off Tamoxifen and onto an AI. 
I refused for the same reason why I am so undecided about what to do about this dang ovary, lol! 
I am TERRIRFIED of instant menopause! My mother had a full hysterectomy at 38 but could not take HRT because she was also a breast cancer survivor. (She passed away from Metastatic Breast Cancer at 56). I watched her SUFFER with horrible menopause for years. I'm so afraid the same future is in store for me if I remove this ovary.
Now, if I go into menopause normally, I'm not too concerned because it's inevitable, right? And I don't think it will be as horrific as being thrown into it instantly.
I don't know if that even makes sense? LOL Thanks for letting me ramble! 

SimoneRC

Hi Ladies!

I need to have ovaries and tubes removed. Doing it laparoscopically. Just wondering how your surgical/post op experience was? Going to do it in the Spring. Meeting with GYN Oncologist mid February. Just wanting to start managing expectations.

Thanks so much!

FarAwayToo

SimoneRC - BSO (bilateral salpingo oophorectomy) was an easy surgery for me. Looks like you are already menopausal (since you are taking anastrozole), so you may not have any long standing issues from it. Physically, I was fine in a few days. A bit of stomach bloating and soreness around incisions (also had laparascopic surgery), but nothing serious. I had surgery on a Tuesday (outpatient, had exchange to implant at the same time). Took it easy Wednesday and Thursday, by Friday I was totally fine, worked a little (I work from home, on a computer). Not sure if it was a result of not giving myself enough recovery time or getting the ovary out, but 2 weeks later I was hit with extreme fatigue, dizziness, hot flashes increased in both frequency and intensity. Maybe I had something else - a viral infection? Maybe it was a combination of things. I was also on ovarian suppression for 5 months before getting the ooph, so, technically, they weren't functioning for a while.

But yeah - the surgery was a piece of cake for me

etnasgirl - I'm sure as 3 year survivor. and having good stats (small tumor, clean nodes, I'm assuming low Oncotype) you have a different perspective at this AI thing. I had larger tumor and was high risk, so when I saw stats for AIs providing a better disease free survival for women like me, I jumped on this bandwagon gladly. All in all, I don't have regrets. Ultimately, we are not guaranteed anything, but having a (hopefully) superior antihormonal treatment gives me a peace of mind. And this peace of mind is quite important to me, enough that I'm willing to sacrifice a bit of QOL.

But we all have to make our own decisions - I wish you to make one be at peace with it. Also, personally, if I have hard time deciding anything, I try to go with a reversible option, which, in your case, may be leaving the ovary intact and just removing the cyst.

SimoneRC

Thanks so much, FarAwayToo

star2017

hi Simone, I had my laparoscopic bso 16 days ago (along with exchange to implant on one side). I'm up and about, driving, etc. I do still have a little tenderness and sometimes a bit of pain if I get up the wrong way, but overall I feel good. I do still find myself getting tired a bit more easily than normal. I think bc it was laparoscopic I expected I wouldn't feel much at all, but it did hurt more than I expected, esp at the larger incision site. Still I was off narcotics within a couple days. Advil was the most effective, and I stopped that about 5 days after surgery. If you have questions, let me know.

star2017

farawaytoo, that’s funny. I’m two weeks out from bso and noticing more fatigue to. Maybe it’s the menopause symptoms setting in (I haven’t had hot flashes or any obvious symptoms yet) or maybe it’s that I’m suddenly up and about more and my body is still recovering.

SimoneRC

Thank you star2017!!

FarAwayToo

SimoneRC, my BC was also called IDC with lobular features, because the tubule formation suggested ductal origin, but the tumor was e cadherin negative, which is usually the sign of ILC. What made yours IDC with lobular features? I was told that these details didn't matter and chemo and the rest of the treatment would be the same. But I wonder sometimes if I should dig deeper to understand what this means.

SimoneRC

Hi FarAwayToo,

You know, I never really asked about specifics of lobular features. He said it is the way the cells look and the prognosis is not worse. Hmmm... maybe I should ask again at my next appointment. I was super concerned when I saw the pathology report but my surgeon discounted it as he said it was not impactful.