Ovarian cramping. On tamoxifen and Herceptin. Prone to O cysts
 

Hi all. I had a pap last week that indicated I might have very minor cysts on my left ovary but nothing that shouldn't resolve. However, I've been having occasional bilateral cramping, and right now it's on the left. Anyway, I'm prone to ovarian cysts but wonder if anyone else experienced cramping while on these meds and what the outcome was.

I'm going for a vaginal ultrasound soon and wonder if hysterectomy is an answer.

Please share your thoughts. Thank you.

Re: Ovarian cramping. On tamoxifen and Herceptin. Prone to O cysts
 

Not much to share as far as Tamoxifen goes, I've never used it. However, I have been on Herceptin for quite some time and have never had it be the cause of any cramping. I can verify this as I went off it for 18 months and still had the same symptoms. I go for my consult on June 6. I'm on a chemo break and DFCI and my Gyn both want me to have oophrectomy due to large cysts on both ovaries which have been there since my original Dx, the consult is whether or not to do a hysterctomy too, as I have a large uterine mass, most likely a fibroid but radiologist always says something else can't be ruled out each time I have a CT.

Re: Ovarian cramping. On tamoxifen and Herceptin. Prone to O cysts
 

Hi there,

I was on tamoxifen for about 3.5 years. I started having the cramping you are describing during year 1-2. I would get ultrasounds 2-3 times a year because of them and like you the result were pesky cysts. But the last year I was on tamoxifen the cysts stopped and uterine polyps developed which lead to uncontrollable hemorrhaging. I had 4 emergency surgeries in one year to stop the bleeding. The last straw was that i developed a blood clot in my leg which they concluded that it was because of the tamoxifen. So I am no longer on it. From what I was told initially cysts are very common while on tamoxifen and 85% of the time they get reabsorbed naturally. But I wanted to let you know that for me they evolved to a more serious issue. So my advise is to keep an eye out, listen to your body. If you start bleeding and you haven't had a period, get an ultrasound asap and if possible a Sonohysterography (they inject saline into your uterus to get a clearer look).

I used to put warm water bottles on my lower belly and it really helped resolve the cysts a bit quicker. :)

hope this helps

Re: Ovarian cramping. On tamoxifen and Herceptin. Prone to O cysts
 

Hi;

I also had triple positive BC. Diagnosed the end of 2004, apart from all else I began arimidex mid year following AC/Taxol and radiation. Took it for 7 years. Following a small bleed it was discovered I had a large mass only a small amount being cancerous....stage 1c ovarian cancer. I have had genetic testing to discover I have a BRCA 1 VUS. Given your age I would wonder about genetic testing. I was originally told that my kind of BC would not likely spread to my ovaries and have indeed been told that this is not a spread but rather a new cancer. It also took from 2005 to 2015 to occur. I had no symptoms of the ovarian cancer although the mass was large. I would certainly recommend that everyone have the CA125 test at least annually so that any change over time can be monitored. You might have to pay for it but it is well worth the cost. A recent report indicated that trends of this test even within the normal range can be indicative of ovarian cancer.

Best regards,

Cathy