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educate me on ovarian cysts

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  • eastcoastts
    eastcoastts Member Posts: 352
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    Marycal:

    So much interesting information. THANKS!

    Everything you're experiencing, I am in similar fashion. Cysts -- never had before -- that we think are Tamox. induced. Had them, then one month later, one gone, another there. I'm 50 and pre-M still, too.

    My gyno plan (and she consulted with an onc/gyno, too) is to repeat every year. So...we'll see. I have another then in Nov or so.

    Good luck and thanks again for the great info share.

  • marycal
    marycal Member Posts: 22
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    Hi EastCoastTS - it does sound like we are basically in the same boat. I just read your previous post too. Glad you have a plan you're comfortable with, and it makes me feel a better hearing that your plan is an annual monitoring too. I feel the same, was on the road to less doctor appts. Did not want to be faced with this monitoring! In regards to your first question, my MO gets all of the results and keeps on top of this with me. I still see her every 3 months for now. Luckily, my MO and gyn are in the same hospital system so all records are available to each of them. Sounds like you might have the same set-up. Best of luck to you!!

  • eastcoastts
    eastcoastts Member Posts: 352
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    Marycal:

    My MO and gyno are connected as well. And seeing someone every 3 months, too. For now. I imagine it may move to every 6 months at some point.

    Let's keep in touch with info! I actually have an MO appt today and plan to discuss latest results with them. I'll let you know if anything differs from what I've shared here. I guess I am comfortable with the yearly monitoring. Gotta just let some of this go -- and can't worry about everything, right? (sigh) However, if I were BRCA+ or had ovarian in my family history, I would be more aggressive.

    Good luck to you, too! Glad you're doing well.

  • summerangel
    summerangel Member Posts: 182
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    I developed large, painful ovarian cysts after only a few weeks on Tamoxifen, never having had one before (or since I stopped taking Tamoxifen). Most doctors are not well informed about the incidence of ovarian cysts in premenopausal women taking Tamoxifen vs postmenopausal women. The incidence is much higher for premenopausal women. Here are just a few studies from a simple search of the two terms (many studies also lump pre- and postmenopausal women together, which gives an inaccurate result).

    https://www.ncbi.nlm.nih.gov/pubmed/16254040

    "Cysts were detected in 28 of 57 pre-menopausal women (49.1%) and 1 of 93 post-menopausal women (1.1%)."

    https://www.ncbi.nlm.nih.gov/pubmed/10021302

    "20 premenopausal breast cancer patients treated with tamoxifen (study group) and compared them to those observed in 12 similar nontreated patients (control group). Ovarian cysts were found in 80% of the study patients and only in 8.3% of the control patients (P = 0.001)."

    https://www.ncbi.nlm.nih.gov/pubmed/10206289

    "Patients still having a menstrual cycle during tamoxifen had a high chance (81%) of developing ovarian cysts."

  • marycal
    marycal Member Posts: 22
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    YES EastCoastTS! Let's stay connected!

    Thanks for posting that info SummerAngel. From my previous research, those are the #'s I came across too. WAY higher than the 30% my gyn quoted me. My MO said, from her experience, the % is even lower than the 30%. But now you have me unsure of whether they were specifically talking about pre-meno or not!

  • Quinian
    Quinian Member Posts: 4
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    I am curious if there are any updates on the above posts. I am 8 weeks into tamoxifen and started with pelvic pain/pressure 4 weeks into T. Thought it was a UTI, but went for U/S on 2.19 and had one cyst measuring 3cm. Ended up in the ER on 2/28 with severe pain (thought appendicitis, it's my right ovary) when they did another U/S and now have 2 cysts on the same ovary one 4.5cm and the other 2.5. Went back to the gyno today as they pain is just getting worse and I am missing work because of it and they have grown, now measuring 5cm and 3cm respectively and I am still in the "watch and wait" protocol. So frustrating. Additionally, I have never had any problems with cysts in the past :(

  • eastcoastts
    eastcoastts Member Posts: 352
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    Quin:

    One cyst has resolved -- I know I should be able to recall all this verbatim because I can't remember about the other -- but my gyno consulted with a oncological gyno who felt this was not alarming. (And were "natural" cysts if that is the way to say it.)

    However, I'm insisting on yearly trans. vag US to check on this (because not sure everyone thinks Tamox causes these). I never had any cyst issues before either, that I know of. (And I have had 2 TVUS previously.)

    I guess the wait and watch is fine if they are monitoring you regularly. Unless the pain is too bad, then perhaps you need to discuss other options with your MO. I feel that's frustrating a bit, too, but is what I am doing as well.

    Hope this helps! I don't know much about this, either. Learning as I go along.

  • marycal
    marycal Member Posts: 22
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    Hey ladies! Checking in to see how everyone is doing. Any new news on cysts, etc? Maybe I should make a separate post about endometrial thickness, but I'm wondering what you all have been seeing in this regard in your ultrasound follow ups. Mine is getting thick, but gyn is still not concerned. Not sure why. I'm pre-menopausal, but the tamoxifen has stopped my periods. Anyone else in this same boat?

  • sm627
    sm627 Member Posts: 142
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    Hi Marycal,

    I wanted to thank you so much for starting this thread. I have learned so much about ovarian cysts. I found out I had 2 small ones back in Nov of 2018. Now my gyn wants to do pelvic US every 6 months. I hope the cyst don't get bigger.

    How are things going with you?

    Would you mind sharing the name of your gyn? I have a gyn who is good, but she does not have a lot of experience working with women taking tamoxifen.

    Wishing you well,

    Sara


  • marycal
    marycal Member Posts: 22
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    Hi Sara, of course! Her name is Mindy Goldman, and she's at UCSF. It is hard to get an appt with her - it takes months - but I do believe she knows her sh*%. I'm a little conflicted because on one hand, she isn't alarmist (which I like), but on the other hand, for me and my issues, she seems almost too laid back, ie, never really that worried. Seeing other women on the forum having biopsies and hysterectomies/oopherectomies while I'm just watching and waiting, is a little confusing. But, I still think she's the doc for me. At least for now.

    For me, I have now seen the cysts come and go. I was very worried in the beginning, like you, I didn't want to see these cysts get bigger. They definitely did. But then they also finally got smaller, etc. I'm still concerned, but I'm a little less worried now knowing this is what is happening. I had once cyst that was 2cm -ish, that grew to about 5cm (I think, I can't find my test results). Dr. Goldman gets worried when a cyst gets above 5cm because at that point they can cause problems: pain, torsion, rupture, etc. But 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. This last ultrasound I had in Dec 2018, that cyst was completely gone, and now I have a 5cm cyst on my other ovary. WTH?? So I continue to get ultrasounds every 6 months although I think Dr. Goldman would prefer I go once a year. I have an appt with her in April to talk about this again (for my own sanity) and to talk about my uterine lining that is just getting thicker. I'll come back here and let y'all know if she says anything interesting. Also, so you know, I haven't really had any symptoms even with the cysts measuring this big. I had a couple of months of slight abdominal pain and bloating, but only slight and it went away (even while the cysts remained big).

    Let me know if you have any other questions. Wishing you the best!

  • sm627
    sm627 Member Posts: 142
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    Hi Marycal,

    Thank you so much for sharing your story and for Dr Goldman recommendation. Know that your cysts got smaller makes me feel better about mine. Wow you have a 5cm cyst that isn't causing you any problems at all that is amazing. I guess it goes to show how Tamoxifen works differently in every women. I would think that a cyst that size would be horrible with all kinds of pain. Glad that you are not suffering. Did Dr Goldman say at what point she would consider removing a cyst and how she would do it? What does she plan to do about your uterine lining getting thicker?

    I feel like we are in the same boat with the waiting and watching in a way I sure am glad to be checked every 6 months.It takes away a lot of the stress and worry, but sometimes I can't help but wonder what if it grows then what. I had a lot of pelvic pain and bloating when I first started taking Tamoxifen it was bad for the first 3 months, but then it got better to were I could deal with it. Now it is starting back up again which is annoying! The only thing I have found to help reduces the pain is heat, walking a lot, and not sitting down for long periods of time.

    Thank you for your help and for listening I appreciate you support.This is the first thread where I feel so comfortable talking about all my cyst issues. I hope your appointment goes well in April I look forward to hearing how it goes. I have an appointment to see my gyn in April too and then have an pelvic US in May.

    I plan to add your thread to my favorite topics list.

    Wishing you well

    Take Care,

    Sara

  • sm627
    sm627 Member Posts: 142
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    Hi Marycal,

    I wanted to check in with you to see how your pelvic ultrasound went in April and how you are doing in general? Hope you got some good news.

    Hugs,

    Sara

  • radonlady
    radonlady Member Posts: 4
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    I just came from the ER. I've had some spotting and bleeding over the last 3 weeks or so along with cramping and some general pain in the pelvis. I've also been just not feeling right and have been nauseous on/off. I thought maybe I had a bad infection so that is why I went to the ER. They did a CT scan and found a 4.3 cm x 3.4 cm cyst with layering hyperdensity on my left ovary. I am super concerned. My right kidney is also enlarged. I've been on Tamoxifen since September, 2016. Going to my gynecologist tomorrow and have to see a urologist as well.

    Any input is welcomed. I could use a little reassurance.

    Thanks,

    Karen

  • kec1972
    kec1972 Member Posts: 71
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    I went for a transvaginal US yesterday and was found to have 2cm hemorrhagic cysts on both ovaries. My GYN wasn’t too concerned and doesn’t think we need to monitor. Do these usually go away on their own?

  • marycal
    marycal Member Posts: 22
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    Hi kec1972 - I just sent you a private message, but to reiterate, they can come and go. I'm sure they play out differently in all women, but for me, mine have come and go. It's just that you hope that when they are there and getting big, that they're not causing any other problems. Was that your first u/s? Are you having symptoms? When I first discovered this was happening to me I was getting u/s every 3 months. And then that's when I really saw how they can come and go. When will you go for another one? Hang in there! My doc wouldn't be worried with 2cm cysts either. She'd want to watch and wait.

    radonlady - I'm so sorry! That's sounds awful. What did your gyn and urologist say? What's the news on your kidney? I know this just sucks, but I hope you're getting some reassurance from your docs. Sending hugs your way.

    Hi sm627 - So I haven't gotten another u/s yet. My gyn wanted me to, but my insurance makes me pay entirely too much for them, so I need to try to wait it out a little longer. Right before my appt with her, I had some pretty bad pain. Stabbing. It was the worst pain I've felt from the cysts. It lasted about 2-3 days. When I saw my doc, she said she suspects that a cyst ruptured. Luckily it was short lived and the pain wasn't too horrible. But she said that the next time I feel pain, she'd like me to get an u/s. She worries when there is pain. The main issue being the torsion, etc. I really want to keep my organs, so I'm going back to the watch and wait. She mentioned something about shutting down the ovaries with shots and/or different drugs, and that would help.I really don't want to have to do that either. Ugh. For better or worse, I'm just going to hang here and keep my fingers crossed that nothing bad happens. It's so frustrating because sometimes the cysts are so small and causing no problems! I don't know. At least I know there's another option if things go pear shaped.

    How did your appt and u/s go?

  • sm627
    sm627 Member Posts: 142
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    Hi Marycal,

    So sorry to hear that your cysts have been causing you so much pain. That must be not only painful but frustrating. The pain that you had was it the kind were you hit the floor and can't move or function well? How long do you have to wait until you can get another U/S? How frustrating it must be that your co pays are so high the one time you really need one you end up having to wait. Are you going to see your GYN again this year? I understand about not wanting to take drastic measures to stop the pain. Keeping your body parts in working order is important and the less they are messed around with the better. I hope your cysts go back to being small and behave themselves.

    I don't have my u/s until next week on Tuesday. My GYN did tell me about cysts and torsion that is scary. My doc told me about a cyst that can grow teeth, hair and claws, but she said that Tamoxifen does not cause that kind of cyst to grow thankfully. I saw my MO last month and she told me that Tamoxifen can make the cyst grow bigger, but not to worry because ovarian cysts are not harmful. Sometimes I wonder if that is really true if it can do so much damage to the ovary if it gets to big.

    I'll let you know how things go. Sending you good thoughts and hope you don't go through such a painful experience again.

    Take Care,

    Sara

  • radonlady
    radonlady Member Posts: 4
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    I had a transvaginal ultrasound this past Monday. Good news is that the cyst is gone. The bad news is that my endometrial lining is quite thick (19mm) with vascularity and numerous cystic changes. This is the message the doctor left on my voicemail yesterday. He wants to talk on Monday to discuss my options. Ugh!

  • kec1972
    kec1972 Member Posts: 71
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    oh no Radonlady! Are you on tamoxifen?

  • kec1972
    kec1972 Member Posts: 71
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    oh no radonlady! This is what scares the crap out of me about this tamoxifen. Seriously thinking about quitting altogether before it causes other issues...

  • vampeyes
    vampeyes Member Posts: 523
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    Hello Ladies, I am wondering if any of you experience fatigue due to your cysts. Have all your cysts been simple or has someone had a complex cyst as well? I see my doctor for results of my latest ultrasound regarding my cysts. They are getting to the point of not just pain when the hormones are high, but now my fatigue is bad and intercourse is extremely painful. Feeling frustrated and engaging if a break from Tamoxifen would improve the side effects.

  • Falconer
    Falconer Member Posts: 801
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    vampeyes,

    I too notice extreme fatigue at different times of my cycle. This is my first experience with a cyst however so I

    am unsure about the effects of it on my energy. I had an US last month and now moving on tthe endometrial biopsy and cyst viewing portion of breast cancer treatment. (Typed with tongue planted firmly in cheek). I'm awake now at 4:30 AM thanks to the gift of the leg cramp that Tam so generously produces. And I know what you mean about painful sex mid cycle. My abdomen feels like a water balloon that is been filled with pine needles.

    My gyn is a bc survivor herself but she is also a tired ob and last time I was there I'm not sure she read my chart right.

    I feel your frustration. Please do keep us posted on your latest dr visit.

  • vampeyes
    vampeyes Member Posts: 523
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    Falconer,

    Have you tried magnesium bis-glycinate for the spasms? I find if I stop taking it the cramps flare up in my caves and feet big time!

    Has anyone experienced nausea and vomiting because of their cysts or hormones? I forgot to add that as one of my symptoms yesterday.

    Thanks for responding.


  • Falconer
    Falconer Member Posts: 801
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    hi vampeyes

    Thanks for the tip. I haven’t tried it. My MO said to drink tonic water, but with my uterus feeling so full, my bladder doesn’t need the extra pressure at night. I also have noticed some nausea at times but no vomiting. It’s like being pregnant without expecting, you know. Hope you get relief soon.

  • vampeyes
    vampeyes Member Posts: 523
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    Seen the gynecologist today for my ultrasound results. It seems both cysts have grown and the lining has increased 5mm in two months. Due to the increase in pain and the nausea he is recommending removal of my left ovary and fallopian tube. The pain is horrible today, tylenol hardly touching it. Now I wait to hear from the gynecologist who can do the procedure that will require an overnight stay vs 2 week hospital stay. Once the ovary is removed they will send it for pathology.

  • Falconer
    Falconer Member Posts: 801
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    vampeyes, I am so sorry to hear that you’re in so much pain. I am also sorry to hear that your gyn recommended more surgery. I do hope that it brings you relief. Holding you in the light.

  • kec1972
    kec1972 Member Posts: 71
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    Oh my gosh vampeyes I'm so sorry to hear about your pain. I hope the surgery relieves it. Did you stop the tamoxifen? How large are the cysts? I also have some cysts on both ovaries that weren’t there before T. Thinking of you.

  • vampeyes
    vampeyes Member Posts: 523
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    Thanks Falconer and kec1972

    kec1972 - do your cysts bother you at all? I am still taking the Tamoxifen for now....

    I am calling my oncologist today to have a discussion about what is going on with the Tamoxifen and my ovaries. I want to make sure I am making the right decision before going in for another surgery. The pain seems to be worse when the hormones are up (around ovulation and period time), same with the nausea, but it seems to be progressing each month. I can't believe something so small can cause so much trouble! The septated cyst is 3.2x2.1x2.4cm and the simple cyst is 3.4x2.1x3.2cm, fairly small, but troublesome. My gynecologist is only concerned with the septated cyst and thankfully does not believe it's cancer, so that's a relief. Honestly I am wondering which is worse stopping Tamoxifen or removal of ovaries and tubes due to the cysts it's causing.

    Take care ladies.

    HUGS

  • kec1972
    kec1972 Member Posts: 71
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    They only bother me around ovulation time, no pain but a feeling of fullness and frequent urination. If they got to be troublesome I don’t know what I’d do. I have an appt with my MO Monday where I want to discuss my exact benefit of tamoxifen; if it is low, I’d like to stop taking it as I hate how it makes me feel

  • nem126
    nem126 Member Posts: 37
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    It might be related to the hormone fluctuation in general- I had ovarian cysts the first few months I was on tamoxifen, then they went away as my body adjusted. When I went off of tamoxifen, I got a cyst again... then my body regulated itself and I'm good again.

    Everyone is different, but for me it seemed like the ramping up/ramping down from the drug was what caused it.

  • marycal
    marycal Member Posts: 22
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    Hi sm627,

    How did your ultrasound go?

    The pain I had wasn't debilitating. It hurt and I couldn't ignore it, but I could still move about my day. I did have to stop and breathe through it sometimes. If I don't have anymore pain, I'll probably wait until the end of the year for another u/s. Although I just started having an extremely heavy period. Will call my GYN on that today. Might end up seeing her sooner. :( By the way, thanks for the visual of a cyst with teeth! 😂😂

    Radonlady, glad the cysts resolved. What ended up happening with your lining? I hope it has resolved without problems.

    Vampeyes, not sure if my fatigue is due to the cysts, but I am tired. Thankfully I haven't had nausea/vomiting. I sure hope you're getting some relief somehow! I for sure have painful intercourse. Surely in part due to the cysts, and definitely due to the atrophy in my case (Tamoxifen, the gift that keeps on giving). Did you decide how to move forward?

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