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educate me on ovarian cysts

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marycal
marycal Member Posts: 22

So that I know what level of freak-out to employ, I need to understand a few things and I know this group can help me. I've read a few posts here on Tamoxifen and ovarian cysts, but I have some other specific questions for those of you who have experienced ovarian cysts (or other ovarian issues) with or without Tamoxifen.

  • I got a baseline ultrasound only 2 weeks after starting Tamoxifen. Discovered a 2.8cm "cyst" on one ovary. Surely that was there already, right? Tamoxifen couldn't have caused it that quick, I'm assuming.
  • Follow up ultrasound 2 ish months later and it has grown (not sure how much yet; waiting on exact results).
  • Recommendation is to wait another 2-3 months and check again. They believe it's likely benign and the growth is due to Tamoxifen. Ok, but exactly how long do they wait to determine whether or not it is definitely benign? How is this tested? Biopsy? Why do they think it's probably benign and not cancer?
  • Are there any women out there with cysts that are not causing problems so you are not doing anything about them? Do we just live with it until they possibly start causing problems?
  • I'm only 2 months in using Tamox and a cyst is growing. Am I to assume that it will go in this direction and continue to grow until problematic? If I'm meant to be on it for 5 years, it's likely going to get enormous.
  • Is there anyone who has seen their cysts grow on Tamox, but then slow down or stop?
Thank you so much. I've been so immersed in breast cancer that I don't know much about this. I was hoping I wouldn't have any problems and wouldn't have to worry about it, but alas.


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Comments

  • ThreeC
    ThreeC Member Posts: 70
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    Marycal, After years of issues with my Endocrine system, I've decided that messed up hormones are the gift that just keep on giving. I was diagnosed with what is currently known as PCOS or Polycystic Ovarian Syndrome in my mid-twenties. You can look up the Syndrome but the part that relates to your question is that from the age of 25 the first time I didn't have multiple ovarian cysts was two years ago at the age of 63. I had years with no monitoring, and years with ultrasounds every 6 months. My ovaries did not function correctly. The cysts came and went. They grew and shrunk. I had lab tests to monitor for Ovarian cancer but fortunately did not develop it. Lately with my BC diagnosis, I was was put on Letrozole only to feel the familiar ache where those ovaries are. I have an appt. with my Gynecologist soon to check them out, but I suspect the medication is the culprit. As long as you are being actively monitored you should be fine. It is sooo hard not to go to Crazy Town with BC and it's treatments. I wish you lots of luck and will check back to see what others have to say too. Sorry for the font but when I try to correct it, I lose what I typed.

  • marycal
    marycal Member Posts: 22
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    Hi ThreeC, thanks for your reply! Your ovaries have put you through a lot. It's interesting to know that you sometimes monitored and sometimes didn't and that they came and went. Great to know that can happen. I hope the letrozole isn't causing you to have the cysts again. Wishing you the best of luck with your upcoming appt.

    I am really interested to know if anyone on tamoxifen had cysts that also resolved on their own? 

    I've been reading more posts and it seems like so many women have had to do ooph/hysterectomy, which is worrying me.

  • plumster1
    plumster1 Member Posts: 100
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    marycal-

    I am hoping someone responds as well. I posted on the other thread too. But I have been on tamox a little over 2 years. Things have always been pretty easy in the gyn area prior to that. However, since tamox, fibroids appeared and I just found out Friday I have a 1.2cm complex cyst on my ovary. I like how you put it “ what level of freak out to employ”...I know exactly how you feel. I see my gyn Thursday and I also made an apt with a gyn onc on nov 9. I want all their opinions. Was your dr very concerned about your complex cyst? Dr google is killing me.


    Michelle

  • Elennnnna90
    Elennnnna90 Member Posts: 3
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    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

  • plumster1
    plumster1 Member Posts: 100
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    ugh Elena, I feel for you! Keep me posted on your next visit and I hope the cysts are smaller. There are so many things with tamoxifen that pop up. Frustrating! I also do not want another surgery so the whole things freaks me out!

    Best wishes!

  • jojo9999
    jojo9999 Member Posts: 52
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    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.

  • plumster1
    plumster1 Member Posts: 100
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    thank you Jojo for the information. I did not know the original use for tamoxifen. Sounds like you have really been through the ringer with ovarian cysts. Were your cysts simple or complex? I wish you the best on the ovary removal

    Hugs

  • marycal
    marycal Member Posts: 22
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    Hey plumster - I wrote on the other thread as well, but please do come back an update us on what your gyn and gyn onc says. I've had 2 ultrasounds so far 2 months apart. This last time, my cyst grew from 2.8cm to 4.1cm (septations seen in first, but then not seen on second. What's that about?) and now there is also an endometrial cyst that wasn't there the first time. Great. My onc was still not really concerned and just wants to wait/see and get another ultrasound in 2-3 months. She's trying to hook me up with a gyn that works with a lot of her patients, so I'm waiting on that. In the meantime, I have my second surgery (after MX) to worry about. She just keeps saying that it's likely due to the Tamoxifen, but is that supposed to make me feel better about it?

    elena - exactly! this is happening for us in 1 or 2 months. How can we get through the 5 years?! Please let us know what your gyn says, and I hope they haven't grown.

    jojo - it's very interesting to hear that your cysts sometimes came and went. And may I ask why your getting your ovaries removed? Is it so you don't have to deal with this anymore/so that you can get to menopause?

    *So in general, what I want to know is- does it matter why the cysts are there (ie, due to the Tamoxifen)? Does that make them totally benign? Can't they cause problems and turn malignant, even if they were caused by Tamoxifen? I'm seeing so many women on this forum finding ovarian cysts and then getting their ovaries removed. This makes me think that having cysts is a grave and dangerous place to be. Then my doc has me on a wait and see and not to worry, which leads me to believe that this might be no big deal. It's confusing to me.

    At the very least, should I be getting cancer markers and hormone blood tests? My onc didn't suggest this, but it sounds like a lot of ladies get these tests done once they start finding cysts.

  • Elennnnna90
    Elennnnna90 Member Posts: 3
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    Jojo - So every time your estrogen levels were low the cysts were getting smaller??? God I wish Lupron injections will do their work and make the cysts go away. I can’t get my ovaries removed. I am 27 years old and I want to have children when this nightmare will be over.

    Marycal- your cysts are simple or complex?? Mine they look on the ultrasound like chocolate cysts (that’s what my gynecologist said). They are not simple and that’s scares me a lot.

    Plumster - what was your cyst look like on the ultrasound?? I also had a CT exam and the lady there told me that they look like endometriosis cysts. God I feel like tamoxifen is ruining everything down there and I really want to have babies one day. :

  • plumster1
    plumster1 Member Posts: 100
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    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

  • marycal
    marycal Member Posts: 22
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    Elena - I'm actually not sure but I'm assuming complex. Will find out more soon. The last gyn I went to see was aghast that I would want a baseline ultrasound. She said that she only looks when there are symptoms. Excuse my language, but F that! Obviously now looking for a new gyn. BTW, I'm so sorry you are going through all of this at 27 and before kids. My heart breaks for you and I really hope you can get through this so you can move on and have your babies. Sending love.

  • kcat2013
    kcat2013 Member Posts: 53
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    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.



  • plumster1
    plumster1 Member Posts: 100
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    hi ladies-

    I wanted to report back after meeting with my gyn today. Overall, it was a very positive and anxiety lowering meeting. As far as my complex cyst, it is about 2.5 cms. Part of it is simple cyst fluid and the other is a more viscous fluid... radiologist thought maybe blood which would make it a hemorrhagic cyst. Gyn was not overly concerned at all. She said she would have been slightly more concerned if their was an actual “solid” component. I asked if tamoxifen could be the cause of all the gyn problems I have been experiencing (fibroids & cyst). Her take is tamoxifen can throw off the whole gyn system off. Usually she would prescribe birth control to try to reset process. However us former BC patients don’t have that luxury and have to keep monitoring.

    I am scheduled to see the gyn oncologist in a week. My fibroids don’t seem to be going anywhere which are creating there own set of issues. She thought it would be great for me to talk to the expert and get his recommendations on my fibroids, cyst etc...

    My overall impression was a complex cyst in itself was not something to go into a total panic immediately about. I do think proactive monitoring is important.

    THinking of you all. Keep us posted

  • marycal
    marycal Member Posts: 22
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    Michelle - thanks so much for giving us an update! This helps me take a breath for a minute. Looking forward to hearing what your gyn onc says. I'm still trying to get in with a gyn my oncologist wants me to see. I'll be sure to update with any info from my end once I have it!

  • plumster1
    plumster1 Member Posts: 100
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    hello all-

    I saw the gyn onc today. He was not concerned about my complex cyst based on the current ultrasound. It of course needs to be monitored but the cyst in itself did not create red flags....no solid component seen...most likely hemorrhagic cyst that will resolve

    My fibroid issues are definitely there and I could address them with a hysterectomy...but that is a different story.

    So I wanted to follow up with everyone and I hope everyone’s cysts end up as seemingly easy as mine are going so far.Keep us posted.

  • etnasgrl
    etnasgrl Member Posts: 185
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    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!)

  • plumster1
    plumster1 Member Posts: 100
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    good to know Etnasgr. I have heard of ovarian torsion. Sounds like it was a scary experience but glad you are ok.

  • lvbugs
    lvbugs Member Posts: 35
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    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

  • plumster1
    plumster1 Member Posts: 100
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    Sorry lvbugs, I don't have an answer for you. I am looking into a hysterectomy as well for fibroids. How did you find out about your cyst? Where you just monitoring and found it? I was just wondering if drs after hystorectomy continue to monitor ovaries
  • lvbugs
    lvbugs Member Posts: 35
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    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.

  • plumster1
    plumster1 Member Posts: 100
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    ugh lvbugs, all these complications and choices are frustrating. Nothing seems black or white. Lots of grey. Keep us posted and I hope the cyst turns out to be nothing.

    On Monday I will make an apt to see MO about his recommendation regarding removing or keeping ovaries. Gyn onc said I am in the grey zone in his opinion. Strong case could be made either way. 48 and still totally premenupausal. Ug

  • lvbugs
    lvbugs Member Posts: 35
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    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.

  • plumster1
    plumster1 Member Posts: 100
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    Lvbugs-

    Interesting about cysts after hysto...and I have seen that website. I figure if i end of getting one that will definitely be a good resource. Gynocologist recommended uterus plus fallopian tubes leave ovaries (i guess they are finding a lot of ovarian cancer starts in fallopian tubes not ovary..so that helps reduce risk). Gynocologist oncologist said a strong case could be made either way...So, am meeting with my MO 11/29 to discuss his thoughts since he is BC treatment specialist. It is definitely hard decision. gyn said studies say your overall life span is shorted if you remove ovaries...however, if you get ovarian cancer obviously that could have an affect on your life span...ugh! Keep me posted :)

  • Tapanga
    Tapanga Member Posts: 17
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    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

  • GardenGirl11
    GardenGirl11 Member Posts: 7
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    Today was my first meeting with my oncologist and she recommended that I take Tamox for the next 10 years. I already have fibroid and ovarian cysts both of which cause me a lot of pain each month. Prior to my BC dx I was taking progestin to level off my hormones and it was helping to decrease my painful periods and spotting. Of course now I can't take progestin because of the BC. :( I'm curious if anyone who has fibroids or cysts did NOT have an increase in their number or size?

    I wish I had come here and read about hormonal therapies prior to my appointment with my oncologist. It seems like all my questions arise after I get home and start researching. :P

  • peggy_j
    peggy_j Member Posts: 89
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    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).

  • peggy_j
    peggy_j Member Posts: 89
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    @ GardenGirl--if you have extra questions, you can probably book another appt before your regular follow up to get the questions answers. My MO recommended tamox, and after I did my research I made another appointment for all my other questions. My insurance covered it.

  • eastcoastts
    eastcoastts Member Posts: 352
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    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.

  • newnorm
    newnorm Member Posts: 54
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    hi everyone

    I’m not sure whether to post this question here, but are any of you experiencing any discomfort from your ovaries?

    Since being on Tamox now for five months I’ve started feeling that oh so familiar feeling like I’m getting my period and my uterus is draining my energy from my body. Basically I feel crappy! And of course my period never comes. I’ve not had one since I started chemo and that’s 11 months ago.

    Is this a Tamo SE?

    Any advice appreciated

  • marycal
    marycal Member Posts: 22
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    Hi all - original poster here! I wanted to give an update as I finally got in to see the gyn that my oncologist wanted me to see. She's hard to get an appt with. She's basically only sees patients that are on Tamox/AI's/have gone through chemo, and she's been doing this for 15 - 20 years. I learned a lot from her although have forgotten some of what we talked about. Anyway, I had the baseline u/s which showed a 2.8 cm cyst two weeks after I started Tamox. She was sure that that cyst was there before Tamox (did not think it could grow that fast). 2-3 months later, another u/s showed 3 cysts on that ovary with the largest one being 4.2cm. Septations shown on the first u/s, none shown on the second. She said that THIN septations are usually benign/nothing to worry about. Just had another u/s and the largest shrunk back down to 2.8cm (yay!). She said this is good news, believes they are just fluctuating due to Tamoxifen and suggests that I get another u/s in 1 year. I'm not feeling too comfortable about the 1 year, but on the other hand, I get it in that, if they were to just keep fluctuating in this manner, I'll just keep stressing out and getting ultrasounds. The interesting thing is that I hadn't had a period for the three months prior to having my second u/s where the cyst grew to 4.6cm. Then, I had a surprise period right before I had my last u/s and the cyst had shrunk. Did the cyst shrink due to change in hormones? If I don't get my period again, will the cysts continue to grow until problematic? That's what worries me about waiting a year for another u/s.

    Anyway, a few things she told me:

    She gets worried when a cyst gets above 5cm because at that point they can cause problems: pain, torsion, rupture, etc. (although she does have patients that have 6 and 7cm cysts and they've decided to just watch and wait. She seemed kind of ok with that). She said, if there are cysts growing, there are 4 scenarios in which she'd consider ovary removal: 1) BRCA 1 and/or 2 positive, 2) a woman who has/had high risk breast cancer, 3) family history of ovarian cancer, and 4) Tamoxifen induced cysts that are large and causing problems. She was pretty confident that my cysts were due to Tamox and that they would come and go, and so from her standpoint, this last u/s just proved that.

    BTW, she said only about 30% (at most) of women on Tamox get ovarian cysts.

    She also explained the subendometrial cysts that the u/s was showing. Tamox causes the glands that we have right under the endometrial lining to swell and they present like "cysts". She sees it all the time and it's not harmful. It can apparently be difficult to know how to measure the lining when there is swelling and these "cysts", so a lot of times it may seem like your uterine lining is building up, but it might be due to the way the radiologist measures it. So that's just something to be aware of.

    As an aside, amazingly, my fibroid has remained stable so far.

    She is going to periodically check my estrogen levels. I'm just about 48 and very much pre-meno. She wants to make sure that we know when (if) I go into menopause, that we know and then can switch to AI's (I guess).

    There was more, but that's the simplified version. I guess now I need to figure out what to do in the way of monitoring.

    Thanks everyone for sharing information and stories. Please keep us all updated!