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Tamoxifen + new complex ovarian cyst + ca-125 test

I am a little freaked out about my Gyno wanting me to take CA-125 blood test due to new complex ovarian cyst that formed in last 6 months.  I already have one that is 2.6 cm that they have been watching with ultrasounds for the past year and that one is unchanged, but now I have a new one that is 2.4 cm in size in 6 months. Both cysts are in the same ovary. I know tamoxifen can cause cysts but can they go from no cyst to complex solid 2.4 cm in 6 months, the amount of time I have been on Tamoxifen?  His office called today and said they will fax order for test and to go tomorrow to take the test. I mean the orginal cyst was just being monitored and I was never told to get a CA-125 test before. I was never tested for the BRCA gene.  Dr is recommending I have a laproscopic hysterectomy.  I know having a hysterectomy will be good for me due to 90% ER postive, but I am scared of that means to me in other ways, plus I had a horrible horrible time coming out of anesthesia during lumpectomy.  Anyone else have this problem?

Thanks

Kristy

Dx 5/22/07 DCIS SNB 0/3 ER+/PR+ Her2-

Comments

  • VBG
    VBG Member Posts: 75
    edited April 2008

    Hi Kristy,

    I developed large cysts after being on tamox and also endometrial build up ( my period stopped afer 2 months on Tamox).  I was dx with a recurrance of BC so stopped the tamox, since it was not working, and my cysts and build up subsided (period started again too).  I am now having my ovaries removed since I will need to go on AIs instead of the tamox.  No one has recommeded a hysterectomy.  I did do the BRACA test and was neg.  Not sure why your doc would reconmmend a hysterectomy vs oopherectomy only.  I would definitely ask for another opinion on this one!

    Valerie

  • roseg
    roseg Member Posts: 15
    edited April 2008

    Ovaries are little cyst machines so it's entirely possible you could develop new ones. Ovarian cysts are a know side effect of tamoxifen, particularly for premenopausal women.

    I'm sure your GYN is just being cautious with the CA-125 test, but it is not a good predictor of ovarian cancer, and will probably return some result that will needlessly scare the daylights out of you!

    How do you feel about having a hysterectomy?  

  • holly123
    holly123 Member Posts: 1
    edited April 2008

    I am new to this tamoxifen journey as well since February 2008.  I just found out yesterday I have a complex cyst on my ovary and will have a cat scan next week to see how involved it is and then I will have surgery to remove it and possible the ovary as well.  To my knowledge, I have never had issues with cysts.  I was diagnosed with LCIS and ADH in January after lumpectomy and started tamoxifen and have been on it for almost three months now.  My gyno says it was probably already there from the size of it.  I'm only 41 and my periods stopped completely after taking tamoxifen that is what prompted my visit this week to the gyno.  He is also doing the blood test to see if I have a high marker for ovarian cancer.  I'm not convinced that this cyst has anything to do with cancer though.  I hope it is not from the medicine.  Does anyone know if the oncologist will make you stop tamoxifen if you have cysts?

    Holly 

  • VBG
    VBG Member Posts: 75
    edited April 2008

    Hi Holly,

    While I had cysts in the distant past my gyn thought that mine were from the Tamox.  I also had my period stop and that led to an increase of endometerial tissue in my uterus so they did a biopsy to be sure it was not cancer.

    I am now having my ovaries removed and moving to AIs.( tamox did not work since I had a BC recurrence) The onc may not make you stop but the SEs from Tamox can cause issues to be concerned about. 

    I have moved to an GYN that specializes in women with BC and my Onc also specializes in BC.  I have a great deal more confidence in them!

    If the issues continue I would suggest getting a  second opinion from another onc.  Does your onc specialize in BC?

    Wishing you well!

    Valerie

  • debap
    debap Member Posts: 51
    edited April 2008

    I am undergoing chemo (TC) right now and have my last tx on May 7th.  Since I am ER+/PR+ and premenopausal (42), I will go on Tamox for 5 yrs.  I have tried asking my onc about having my ovaries removed instead (to decrease the risk of recurrence of bc or ovarian cancer) but haven't received a clear answer.  Has anybody received info about the best course?

    Debbie

  • awb
    awb Member Posts: 213
    edited April 2008


    Kristy--I developed large ovarian cysts while on tamoxifen.  My gyn denied tamox had anything to do with it (said tamox only affected the uterus, not the ovaries), but I never had any issues with ovarian cysts before tamox, so it makes you wonder. Mine was 5.5 cm when discovered by CT scan (severe abdominal pain due to rupture) and then seen on transvaginal ultrasound.  Because of my family history of bc and my LCIS, my gyn was concerned about the possibility of ovarian cancer. He did a CA-125 blood test, but cautioned that can be an unreliable test, especially in premenopausal women. Made me wait a few weeks to see if it would resolve on its' own (apparently sometimes they do), but it just kept growing larger, so I ended up with a total abdominal hysterectomy, but fortunately everything turned out benign. I was going to have him try to save the other ovary (to avoid an immediate surgical menopause), but decided against it as I didn't want to take the 25% chance it would happen all over again; turns out I had 5 cysts in all, they were already forming on the other ovary and weren't detected by the TVUS, so I feel like I made the right decision. However, I do wish I had gone for a 2nd opinion at the time. (perhaps they would've taken me off the tamox temporarily to see if the cysts would go away and then might've avoided major surgery, who knows?)
     But even having gone thru major surgery and immedicate surgical menopause (no fun!), I still take tamoxifen as it is the best thing for my situation (high risk from LCIS and family history) and has a very good record as a preventative for invasive bc. I think what happened to me is really a very rare occurence; most people tolerate tamox quite well with hot flashes being the most common SE.

    Anne 

  • betsy13
    betsy13 Member Posts: 18
    edited April 2008

    Hi,

    I started on Tamox in Sept 07....dx with dcis comedonecrosis....grade 2 stage 0 in Jan 07.....in oct 07 had abd. discomfort...sent for TVUS....ended up with surgery nov 07 to remove 4 polyps (3 had developed between the time of first TVUS and the 2nd TVUS just before surgery) in March more discomfort.....sent for another TVUS....5cm cyst on R ovary (only one left) now I am going to have a laparoscopic assisted vaginal hysterectomy (LAVH) on May 6th.....the cyst did not resolve...and with the polyps decided not to take a chance on another surgery down the line......From what I am seeing on these boards and from reading the se on the Tamox insert ovarian cysts are se of tamox....my ? has anyone else had LAVH and how was the recovery....this is my 4th Laparoscopic surgery (the one in nov for the uterine polyps also included a hernia repair by laprascope) I seem to recover well and each time was back to work within a week.....my biggest disappointment is that I was running the Komen 5K on June 7th as a team captain and have been training hard....don't know if I will be allowed to run by then......anyone???

    Betsy     

  • awb
    awb Member Posts: 213
    edited April 2008

    Betsy--my sil had the LAVH (but only the uterus, not the ovaries, so not as extensive) several years ago and was given restrictions for no lifting for 2 to 3 weeks, no driving for 2 weeks;  I think she went back to work after 2 weeks, but she does have a desk job. It might be different for you since you are having more removed and you have a more physical job; you probably just have to wait and see how you feel. I think running a race would be too strenuous an activity even after 4 weeks, but that's my opinion as a PT, not an athlete! Again, I think you will have to just see how you're feeling at the time. (you're very fortunate to have been watched so closely---I complained about mild abdominal discomfort for about 10 months and was brushed off by 3 different docs since it was "inconsistent and non-specific".  Gyn actually said no when I specifically requested a TVUS since I was on tamox--said no since I wasn't having any abnormal heavy bleeding problems.  PCP  was the one who sent me for the CT scan when my abdominal pain became very severe (cysts ruptured).  Now I always recommend a yearly TVUS to any one taking tamox to monitor BOTH the uterine lining AND the ovaries.

    Anne 

  • betsy13
    betsy13 Member Posts: 18
    edited April 2008

    Hi Anne,

    Yep i am lucky.....I have a great team of dr.s.....I should be a better and more patient patient for themInnocent....I will just have to see how I feel.....there is no putting off the surgery....and they couldn't get me in sooner.....I am trying to be grateful that it isn't something worse....I just am so disappointed about the race.....had rallied lots of running friends and family and so I will just have to show up with a grateful smile & enjoy the momentSealed....thanks for the PT advice....have you found all OTs to be this stubbornCool

    Betsy 

  • betsy13
    betsy13 Member Posts: 18
    edited May 2008

    Hi all,

    just wanted to share my experience with you....just got back from my LAVH stayed over 1 night.....it turns out that the cyst was larger than my uterus and had wrapped itself around the ovary which was "killing" the ovary and it was stuck way down partially turned on itself.....so even if I had chosen to just remove the ovary...once he got in their and saw the uterus (was bit enlarged and a little specious)

    he would have gone ahead with the LAVH....so I am glad I was prepared....SO for any of you who have lower back pain or flank discomfort......insist that you Gyno do an TVUS....we know our bodies and when something isn't right....I'm glad that my drs listen to me and are caring and compassionate.....I have never had to "back down" as a matter of fact my Gyno is sure the cyst is related to the tamoxifen...

    Betsy