Hi there!! I have exactly the same problem and the same concerns!! On October 4th I went to my gynecologist for an ultrasound and I found two cysts one in each ovary and some free fluid in my Douglas pouch. I was terrified because last time I checked in July I was clear. The thing is that I only had one month in Tamoxifen and my biggest question is what will happen after 5 years. If in one month I got two cysts (one 4,5cm and the other 2 cm) what will happen in the future?? My oncologist recommended to start ovarian suppression with Lupron injections to see if the cysts will get smaller. He believes that this is happening because I still have period. I hope they will!!! I can’t undergo another surgery to remove the cysts. I am so tired. I am recovering from double mastectomy Andy I would like to stay away from hospitals for a couple of months. Next week I am visiting the gynecologist to see the size of the cysts. I wish that they haven’t grow bigger. I hope the best for you!!

Elena

I am one who has had cysts while on tamox - also have had high estrogen levels. Lots of ultrasounds. Sometimes the cysts would shrink - and estrogen levels would fall, But then back up again. The MO was going to declare me post meno - but did an estrogen test just in case, and it was high again. I stopped tamox because I thought it was causing some eye issues. My gyn said that it takes 3 months for tamox to completely exit - it did, but then everything kicked into high gear - got my period, very heavy (54 y.o). I am sure I have more ovarian cysts. I am planning to have ovaries removed. Keep in mind that at one time, when it was first developed, tamox was tested as a possible birth control AND at another time, a possible fertility drug - so definitely affects ovaries.

marycal-

Another good point...if tamox causes the cyst then it is mos likely benign is a good question. I feel like I will have a lot for my gyn this Thursday. I would think it is reassuring that your onc does not seem overly concerned. I am kind of holding onto something similar. When I was called about my test results, it was 1 1/2 weeks after the test date. Tech had said report would be ready in one to two days. Also it was the NP who called not the dr. The NP has told me before when she has called about other stuff that she never does the bad stuff calls that is reserved for the doc. So I figure if it was really bad the doctor herself wouldn’t have called right away...at least I hope so 😝

Elenna90-

The NP told me about my fibroids and the complex cyst but did not go into detail as to what type was suspected. I am going to ask the doctor about that as well.

Hopefully we will all get through this together with positive outcomes! Keep us posted!

Michelle

Elena, I have a history of many ovarian cysts prior to bc diagnosis. I was on Lupron + Tamoxifen for 3 years and did not deal with a single cyst the entire time. Sometimes there's a tiny bit of a silver lining to bc treatment So maybe that will give you hope that your cysts will respond to the Lupron as your oncologist has suggested. I recently stopped Lupron so am a bit nervous about starting to develop cysts again (I had painful cysts that burst) being solely on the Tamoxifen.

Please, please, please be careful with ovarian cysts and Tamoxifen! (What I mean is, if you have ovarian cysts and are on Tamoxifen, please make sure to monitor your cysts often via ultrasound.)
I've been on Tamoxfien for roughly 2 years. I never had issues with ovarian cysts. One year into Tamoxifen, I decided to have a hysterectomy because the Tamoxifen was causing my uterine fibroids to grow. (I had uterine fibroids prior to breast cancer.) Everything was taken except for my ovaries. During the hysterectomy, my OB/GYN removed a fairly large, benign ovarian cyst.
Fast forward to October of this year. I woke up one morning with very intense, stabbing gas-like pain in my lower left pelvic area. It came on all of a sudden and prior to it, I was feeling totally fine. I took some Gas-X and went about my day.
A few hours later, the pain was worse. I decided to make an appointment with my primary care doctor. (I felt a little silly going in for gas pains, but figured maybe she could give me some prescription strength meds to help.) While at the appointment, I got so dizzy and lightheaded, that I had to slide down the wall so as not to fall. Seeing that. she ordered a CT stat at the nearest hospital. I had to call my husband to pick me up and drive me over there because I was way too dizzy to drive.
I got the CT done and not even 10 minutes later, the radiologist came out and told me to get over to the ER right away because the CT showed massive amounts of blood pooling in my abdomen. 
The long and short of it is an ovarian torsion. I had a cyst on my ovary grow so big, (I didn't feel it because it had plenty of space to grow since my uterus was gone.), that it caused my ovary to twist and then rupture. Yes, my ovary and the cyst both ruptured. My OB/GYN told me that had I not gone to the ER right away, I would have died. I had emergency surgery that night to remove what was left of my ovary and clean up the internal bleeding. 
She told me that the Tamoxifen caused that. Once I healed, I spoke with my oncologist who agreed with my OB/GYN. I now only have one ovary left, so we are closely monitoring it with ultrasounds every 6 months. 

So....please, if you know you have cysts and you're on Tamoxifen, stay on top of things. An ovarian torsion CAN happen and they CAN kill you. (Not to mention, the pain is off the charts! I would rather go through childbirth with no meds than do that again!)

If you have ovarian cysts that are large, but not causing to many problems and your estrogen level is high would it be better to remove the ovary? My doctor appointment is the end of November and will see what is recommended. Just thought you ladies might have input. I’ve been on Tamoxifen for over 2 yrs and had to have a hysterectomy because of large fibroids that developed shortly after starting it. Only kept one ovary, but that now seems to have a complex cyst. Will be having MRI also. Take care ladies

I️ wouldn’t have known, but MO had me do a PET scan after treatment in April of 2016 and it showed the cysts. So many US to monitor and almost was being scheduled to have the ovary removed last November and then last US before scheduling showed the cyst was gone. Those were all simple cysts. Now a year later requested US for surveillance and it shows I️ have the solid complex cyst and several simple cysts. I’ll do an MRI and see what they have to say. I’m just concerned if I️ have that much estrogen if it’s better to have it removed anyway.

From what it sounds like on hystersisters web site, that these cysts after hysterectomy happen often. If you had not gone to that site there is some good info for hysterectomy. I’m 47 and doesn’t seem menapause is close, but have to say that I’m glad I️ had the hysterectomy. Just wish this last ovary was doing better. Surgical menapause scares me. Is the one doctor saying to take everything out? Keep usposted and hope all goes well.

Hello All. It's been a while since I've checked into these discussion boards but knew that some of you would be going through something similar and I take comfort in knowing I'm not the only one although I wish none of us had to go through any of this.

I've been on Tamox for about 2.5 years. 2016 found cysts on my ovaries only because I had an ultrasound to check my IUD. After a follow up had two Lupron shots and ovaries eventually came back clear. Stopped the shots. Fast forward to early Oct 2017, went in for ultrasounds after some pain (which turned out to be cramps, my body coming back "online" after the Lupron shots, I had enjoyed nearly 1.5 years of no periods!) and found cysts are back on the right side and the two smaller ones are complex. I happened a see my oncologist for a check up and she said if the follow up comes back as they are still there that she would recommend getting them removed. (My mom died of a surprise diagnosis of ovarian cancer earlier this year so she is being extra cautious.)

I'm on the fence. Not really into another surgery, not really into having another part of my body removed, but if this is the best move, then so be it. The Lupron shots really did give me a good taste of menopause so I have some idea of how I will handle the symptoms... I have finally stopped having constant hot flashes and have started sleeping through the night better so I'm not looking forward to regressing.

I'll check in more regularly. Best wishes to each of you also asking your own questions and dealing with your own treatments

Keep in mind that the measurements from the ultrasound readings are not exact, so part of the size fluctuation can be due to that. My cyst kept changing size (getting larger, then smaller) and then I noticed that the size of my uterus was fluctuating too. I don't think so. So keep in mind that U/S are imperfect tools and aren't even reliable in detecting ovarian cancer. This is why many gynos aren't thrilled about using them unless there are symptoms. However, if the U/S shows a cyst, it is good at showing whether the cyst is solid or not, which is important.

In my case, we found a semi-solid cyst that they kept saying probably wasn't cancer. (hmm...not very reassuring). My gyno's first thought that was that my cyst may have been filled with dried blood (it happens). We kept monitoring and it never went away (sometimes they do). I finally got sick of worrying about it and removed my one ovary with the cyst and both tubes. There were two funky things going in, the dried blood and some endometrial tissue. So I had a little endometriosis that we caught early. (so I guess there was one benefit of going through that drill).

Guys:

Need your advice. I don't want to post this on the Tamoxifen boards because it causes panic perhaps and nothing is substantiated in any case. But here I am with ovarian cysts -- never had an issues before -- and wonder if it's Tamoxifen.

So, I had a recent TVUS and two cysts were seen. I do not know if they were considered complex or simple but hemorrhagic was mentioned. Largest 1.8mm, I believe, other smaller. I have had two previous TVUS in the past and all was clear. This is what makes me feel it's possibly the Tamox.

Anyhoo -- the plan is to repeat the TVUS in a month. My gyno was concerned due to "my history". She's really thorough, but I don't think she deals with BC patients a lot. I don't know if that makes sense but I feel someone who deals more with us would be less concerned, if that makes sense! LOL She is seeking advice from a gyn.onc -- and I will get a referral ASAP if the mid-Dec TVUS still shows something. But I'm cool for the moment to keep it with her. These are large institutions, so I have good care.

I just finished Exchange surgery in Sept and was on the road to less doctor appts and all that crapola -- and now, ugh. I guess my question is: who manages all this? Do you include your MO and they advise Lupron (if advised) or does a gyn onc deal with all this? Or is it the team of both? I just wonder if now I may have to deal with this as a SE, as I've had almost ZERO SEs from Tamox so far. So this is mine to manage. Fun!

So we just watch these things through TVUSs? Is that the typical plan?

Thanks in advance for advice! Hugs to all.