Bad Cramping years after ablation - taking Tamoxifen

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Mommado
Mommado Member Posts: 68
edited March 2015 in Hormonal Therapy - Before, During, and After

I had an ablation in 2009 and since have had very minor if any cramping and no bleeding.  I've been on Tamoxifen since 2012 and for about the last 6 mths I've been having cramping like I did before the ablation - pain that knocks me over.  I don't seem to be having bleeding but I have had an ovarian cyst burst and was told I had another on the left side.  I know Tamoxifen puts you more at risk for uterine cancer but I also know there usually aren't signs after an ablation.  So my question is - anyone else have these issues??

Thanks!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2015

    Sounds like cysts to me. I could always tell when I was ovulating because I would have knock-me-down cramping for a few hours every month. Can't hurt to talk to gyn about a tvu (ultrasound).

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  • Mommado
    Mommado Member Posts: 68
    edited March 2015

    I just left a message with the Dr's nurse.  What did they do about the cysts?  I'm ready just to have everything taken out - although I may have to do more cancer treatment (mastectomy/chemo) so I don't know that I can get that much time off of work.  I don't find out if the cancer is back until April 8 - I have a follow up MRI/Mam for a lump they found 6mths ago...

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2015

    They just repeated the TVU three months later and the complex cyst resolved on its own. I still have simple ovarian cysts. I'm having a D&C on April 14 along with an ooph. Then I can dump Tamoxifen. My brother a gynonc said if the uterus is proven benign w a D&C there is no reason to remove it. Crossing my fingers and toes that the lump is nothing! Please let us know how it goes!


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  • Mommado
    Mommado Member Posts: 68
    edited March 2015

    Called the doctors other location and they called the main office and set me up with a 2pm appointment and possible ultrasound.  My doctor is on vacation but they said with my history I should be seen.

    How great your brother is a gyno!!!  It must be so helpful to be able to run things by him!  My fingers are crossed that yours all turns out well.  Thanks so much for the help :)

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  • Annie88
    Annie88 Member Posts: 196
    edited March 2015

    Hello ladies! All that I have read makes me a little leary taking tamoxifen. I have had laparoscopic surgery for endometriosis twice and have been tempted to just get it all out. My OB Gyn had me taking the pill to keep everything under control, it was the one that you have a period every three months. My head ached like never before! I took myself off of that pill real fast! I'll just take this one day at a time. I hope everything goes well at your drs visit. Yes, it must be great having a dr in the family!

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  • Mommado
    Mommado Member Posts: 68
    edited March 2015

    Hi Annie

    I have endometriosis and that's what lead to the ablation - was going to do the hysterectomy but surgeon suggested the ablation - if I could do it over I'd do the hysterectomy.  Ablation was so painful and now I have no idea what is going on because I don't bleed so no way to know what is causing anything.

    I absolutely hate the Tamoxifen and if it were up to me I wouldn't take it but my husband, mom and kids have made me promise I would so I guess I have to, plus dealing with all this is better than dying from cancer - :)

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  • Mommado
    Mommado Member Posts: 68
    edited March 2015

    Saw the doctor and was a bit of a waste of time - she did an exam but wasn't really able to do an internal and she wanted an ultasound so she sent me to schedule one and they can't get me in until next Thursday - I thought that was a waste of time becuase I'll be fine by then. She thinks cyst and won't do anything so why bother. Receptionist said she would call Monday and get me an urgent appointment so I will get in Monday. She did give me pain meds which I guess will help although I hate taking them. I found out I have a blood pressure issue - nurse almost wouldn't let me go becuase my diastolic was high but doctor let me go I just have to follow up with my Primary. I think it may be because of the radiation that I had which was on the left side. So no answers just more problems! UGH

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2015

    Another hurry up and wait day, huh, Mommado. Yeah it is great to have a gyn onc in the fam. I try not to abuse him too much. He was the one who recognized my deep depression post dx after DD made a desperate call to him.

    I hope you get some answers soon.

    Annie I think we're the exception and not the rule re: tamoxifen issues. When I learned it was the first line of defense for stage IV I was sold.

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  • Annie88
    Annie88 Member Posts: 196
    edited March 2015

    Mommado- what a frustrating day, sorry you had to go through that. Interesting to hear your feedback on ablation, I had no idea that it was a treatment for endometriosis.

    FarmerLucy-Sorry you have had the SEs. This treatment thing is a challenge

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited March 2015

    My first year on Tamoxifen was truly awful. I've dealt with pelvic pain for years & Tamoxifen made it worse. Developing cysts on tamoxifen was in the cards for me. So far I've resolved each of them. My GYN at one point checked my ovarian tumor marker(CA125). Mine tends to elevate a little when I have those fluid filled cysts. Then it goes back to normal when they resolve. Although I still bitch & moan about SEs, they have lessened. Completed 3 1/2yrs of my 5yr sentence. I really want to complete 5yrs because of my positive nodes. My low oncotype score indicated chemo would benefit me. So these antihormonals are all I have.

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  • Mommado
    Mommado Member Posts: 68
    edited March 2015

    Sorry to take so long to update.  I got the results from my ultrasound from the covering doctor that I saw and she said it was clear no reason for pain.  I followed up with my doctor after reading the report online and seeing there was a small/medium cyst on my right ovary.  He said for some unknown reason I'm forming cysts when I never used to - I'm convinced it's the Tamoxifen.  He said I have two choices  - deal with it for the next 4 yrs until I hit menapause or have my ovaries removed.  He recommended the ovary removal because it also takes out the cancer risk since we are more likely to get ovarian cancer because of the breast cancer.

    So I told him I want to sit on it and think a bit and I also want to talk to my onco becasue removal of the ovaries means hormones and tamoxifen pills and I really want hr take on it.  I go for an MRI and Mam on 4/1 and see my onco on 4/8 - this is for a six mth follow up for a lump - so I may be facing the full bag of mastecomy, chemo, etc on top of the ovaries.  Hoping we just have to deal with the ovaries :)

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2015

    Mommado - I hope and pray the lump is nothing. You have enough to deal with. Remember - don't go there 'til you get there! Hugs!


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