Tamoxifen and ovarian cysts

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Supermama
Supermama Member Posts: 10
edited November 2017 in Hormonal Therapy - Before, During, and After

I started on Tamoxifen in mid-July and had a baseline vaginal ultrasound 2 weeks later so we could track any changes caused by Tamoxifen. At that time, I had a large (6.5cm), simple cyst on the left ovary, a couple minor peripheral cysts on the right ovary, and normal looking uterus. Since I didn't have any symptoms caused by the cyst, we decided to recheck an ultrasound in 2 months and then decide what to do. Now, we're 2 months later and I had the ultrasound earlier this week. The results of this US were much different. The cyst on the left ovary is still there with no real change so we know that will have to be removed. The lining of the uterus has gone from 4mm to 20mm and now has "cystic spaces" and there is a 4.8 cm cyst within the right ovary that has a septation (wall in the middle). Now I will have to have an endometrial biopsy on the 30th and at that time, we'll "discuss our options." I feel confident that the changes are due to Tamoxifen but wonder if anyone else has seen this level of complication after less than 3 months of Tamoxifen. I would think she will recommend a hysterectomy but don't know if she would rather treat the problems and recommended stopping Tamoxifen. Has anyone else had similar complications so soon?

On top of this, I had my 1st followup mammogram the same day of the ultrasound. There was a new cluster of microcalcifications right beside the area that was removed back in March. My margins were clear after the 2nd surgery and I did 30 treatments of radiation. This could be from tissue destroyed during radiation but we don't know for sure. I will have a stereotactic biopsy on Friday to check that. This is not how I hoped my follow up would go. I was looking forward to celebrating my first clear mammogram since my diagnosis in February. It's just a lot to take in and am looking for anything that might help me make sense of all of this.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2017

    I don't have any input for you but wanted to say that I am so sorry. I can't imagine the disappointment in needing further biopsies, of not getting an "all clear" result!

    I hope the follow up will be straightforward and wish you the best.


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  • Supermama
    Supermama Member Posts: 10
    edited October 2017

    Thank you so much. It does help to know there is a whole community of survivors all pulling for each other. When one is weak, the others are strong.

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited October 2017

    When I took Tamoxifen the first time in 2000, it caused both ovarian cysts and endometrial thickening. I usually had multiple cysts every time I had a transvaginal ultrasound, which was part of my monitoring regimen.

    I had an endometrial biopsy which came back normal, and the ovarian cysts resolved when I stopped Tamoxifen to have a baby.

    My oncologist indicated that ovarian cysts in premenopausal women on Tamoxifen is a known side effect. There are several articles on the ovarian stimulation effects of Tamoxifen.

    I'm on my second round of Tamoxifen now, after an ADH diagnosis last year. I'm still premenopausal, and will be going in soon for my GYN exam. It'll be interesting to see if I have these cysts this time around as well.

    Tracy

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  • marycal
    marycal Member Posts: 61
    edited October 2017

    First, I have to say that I'm sorry you're going through all of this follow up and possible issues. I'm hoping for the best for you. Hang tough. I also want to say that, like you, I started Tamoxifen and then got a baseline ultrasound a couple of weeks later. I had a 2.8cm cyst with septation. Could our cysts have been there already? Could Tamoxifen have caused that THAT fast? I just don't know. Just had a follow up ultrasound and it has gotten bigger (not sure how big yet). Have only been on Tamox for 2.5 months. My oncologist wrote to me and implored me not to worry. That she is confident it is due to the Tamoxifen and to get checked again in another couple of months. My lining is ok so far, but I am very worried about that too.

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  • Supermama
    Supermama Member Posts: 10
    edited October 2017

    It sounds like we are in the same boat. Since I posted this, I have had some resolution. My breast biopsy was negative. What they saw was tissue affected by radiation. I saw a new Gyn who was not excited about the findings and did his best to calm my fears. I will have an endometrial biopsy on the 7th but feel confident there will not be anything there. I will see my oncologist mid-November and see what she says about all the GYN stuff. My gyn said that if she says we need to start removing stuff, then he will remove stuff, but he said that after everything I've been through, to force me into a quick menopause would be cruel if it's not absolutely necessary. All I can do now is wait to get the results back on my blood work (hormones and tumor markers for gyn), and have the biopsy. In the back of my mind though, I am still worried about the amount of change that occurred after just 2.5 months on Tamoxifen. I guess I'll wait to see what my oncologist has to say. She has seen this a lot more than me so if she's not worried, I won't be either.

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  • TaRenee
    TaRenee Member Posts: 464
    edited October 2017

    I’d just like to say that this scares the shit out of me. I have had my cycle every 2 weeks for about the last 1 1/2 years. We did the internal ultrasound (oh my lord was THAT an experience) and never found anything worthy of concern there. Then this year I found my lump and it was cancer and it was HIGHLY PR/ER + so we think the menstral issues were connected to the hormone levels spiking. (Blood work had hormones within normal range every time we did it). So I had a BMX and now I worry that the drug I take to treat the cancer will only cause me more problems. I try not to worry but this is scary stuff. I am still healing. Still learning to live with this. And scared is what might happen next. But I don’t let that worry and fear run my life. It is lurking in the back of my brain tho

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  • Supermama
    Supermama Member Posts: 10
    edited October 2017

    I remind myself that I am reducing my risk of a recurrance. God willing, I have to protect myself from a recurrance for another 40+ years. While I hate the idea of creating problems, I do find some comfort in the idea that these problems are not breast cancer. When I was told there was a new spot on my mammogram that needed a biopsy, it felt like all the air was sucked out of my body. I reminded myself that I was strong enough to handle this, but the knee-jerk reaction was panic. It was almost a PTSD-type reaction. If Tamoxifen helps protect me from dealing with that, I'm ok taking it. I'm taking a chance with the medicine, but I know what could happen if I don't. That has helped me deal with this.

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  • plumster1
    plumster1 Member Posts: 270
    edited October 2017

    ugh! I am dealing with a cyst issue too. I am little over 2 years into tamoxifen and it seems to get worse as time goes by. I had an ultrasound as a 4 month recheck on my fibroids....which the big one stayed the same 4.9 cm - yea! The small one grew 1.4 to 1.9cm and two new small ones appeared a little over 1cm....


    But I also had a 1.2cm complex cyst on my ovary. I am freaking out. I see my gyn this Thursday...nov 2. What have others done about a complex cyst? Should I be this worried about ovca

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  • Supermama
    Supermama Member Posts: 10
    edited October 2017

    I can't tell you not to worry. I think after being through what we've been through, we're entitled to worry. I will say that I know the large majority of complex cysts are NOT cancerous. I believe there is no increased risk of ovarian cancer with Tamoxifen but as I've learned, the formation of cysts are not unheard of with it. I would think it's more likely that the complex cyst formed because of Tamoxifen rather than something else. Did you have any genetic testing done? The fact that my genetic testing came out negative has helped me keep from worrying myself silly about the cysts. I know no genetic link found doesn't guarantee I won't get cancer (I did get breast cancer afterall), but I remind myself that my risk is no higher than the average person.

    It hardly seems fair that we have to suffer side effects that interrupt our lives and are caused by a medication we have to take to prevent a recurrance of an enemy we already beat once and did nothing to cause in the first place. I guess it's just the hand we are dealt, but I believe we are all strong enough to push forward. We've already beat cancer, we're unstoppable!!

    Good luck at your appointment and if you think about it, come back and post an update. We can all learn a lot from each other.



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  • plumster1
    plumster1 Member Posts: 270
    edited October 2017

    supermama thank you for the support! Yes I did all the genetic testing and everything came back negative. That is a good thing to focus on. I think with all the follow up medical procedures due to BC ( colonoscopy, breast mris and mammo) I have become hyper sensitive. I look forward to talking with my gyn about it. Hopefully she will put me at ease. :

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  • HuskerFan
    HuskerFan Member Posts: 85
    edited October 2017

    I've been on tamoxifen for almost a year and a half. In August I had a vaginal ultrasound for some other issues I was having. The US showed I had an enlarged left ovary and multiple cysts as well, the largest complex cyst measuring 4.1cm. I just had my follow up US last week and met with my gyn. All the cysts have gone away except for a simple cyst. We will continue to monitor with another US in 6 months

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  • plumster1
    plumster1 Member Posts: 270
    edited October 2017

    Husker fan-

    So glad things are going in the right direction for you! Glad to hear your complex cyst resolved itself. Gives me hope that mine might to

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  • marycal
    marycal Member Posts: 61
    edited October 2017

    Supermama - so glad to hear that your breast biopsy came back negative. Please come back and let us know about your blood work and what your oncologist says.

    plumster - you too. I hope you come back with an update after meeting with your gyn.

    huskerfan - that's amazing. so glad you chimed in. so far, I hadn't seen anyone on tamoxifen have their cysts resolve themselves. This gives me a little hope for myself.

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  • plumster1
    plumster1 Member Posts: 270
    edited October 2017

    thank you Marycal! I will keep you all posted

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  • plumster1
    plumster1 Member Posts: 270
    edited November 2017

    I posted this also on another thread but wanted to report back here too. :)

    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 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

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  • Supermama
    Supermama Member Posts: 10
    edited November 2017

    plumster1, that sounds similar to what my gyn said. It is reassuring that we both got similar advice. Good luck at the gyn onc. Keep us posted as you go down this road. I'm curious to hear if the gyn onc has a similar take or if he/she is more aggressive as an oncologist.

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  • plumster1
    plumster1 Member Posts: 270
    edited November 2017

    yes Supermama. I agree it is comforting we are hearing the same general advice. I will post after the gyn onc. It should be interesting

    Best wishes to everyone

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  • Reckless
    Reckless Member Posts: 112
    edited November 2017

    Ladies,

    I do not want to scare anybody, but my oncogyn took my complex cyst very seriously. It was first discovered on TVUS on 10/20, the CT showed such cysts on both ovaries on 10/24. They are septated, with solid elements. Previous TVUS 6 months ago showed only simple cysts, which are still there.I am scheduled for surgery on 11/14. I have been on tamoxifen since 6/2016, but I am BRCA2+, so the ovaries are coming out regardless.

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  • Occovegirl
    Occovegirl Member Posts: 27
    edited November 2017

    Hi I just found 2 cysts on my ovaries also .. I have been on Tamoxifen for 2 years also. It is scary but my gyno said another test in 2 months to check if any changes. I am just so sick of all the side effects of tamoxifen. I have a lot of them and its been a roller coaster of a ride. But I also feel blessed to have caught my breast cancer on the early side. Hang In There. I always say it's only a temporary situation. I only have 3 more years of these meds. Than I am free!!

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  • Occovegirl
    Occovegirl Member Posts: 27
    edited November 2017

    Good Luck with your surgery I have asked my gyno if we should just remove my ovaries as well for new cysts but he is against that for now.


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  • plumster1
    plumster1 Member Posts: 270
    edited November 2017

    yes reckless, my gyn said if there is a solid component it that is more of a red flag. i would imagine even more so being BRCA+. Good luck with your surgery on the 14th

    Occovegirl, I have asked my gyn too about ovary removal because I might be in for a hysterectomy. She said in my case she would recommend removing the Fallopian tubes but leaving the ovaries. But, she is deferring to gyn onc and MOwho I see this week

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  • Reckless
    Reckless Member Posts: 112
    edited November 2017

    Thank you, plumster, frozen section biopsy was benign. Waiting on final pathology report...

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  • plumster1
    plumster1 Member Posts: 270
    edited November 2017

    reckless, congrats! I hope final path reflects the good news you got on the frozen

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