Breaking news - extended Tamoxifen beneficial

Hi Louise,

So happy I came across your post.  Arlene Chan is also my oncolgoist and has been since my diagnosis in September 2008.  I am now on my fifth year of tamoxifen and I too saw Arlene in March of this year who told me that I would be continuing on the drug for a further five years.  I at first was a bit down as I was looking forward to going onto the next drug but as I am still pre-menopausal and at the age of 46 she said I am still young enough and lucky enough to continue tamoxifen for a further five years to great reduce the risk of getting breast cancer again.  However, the down side is that probably over the last year I am now continually having cysts on my ovaries and thinkening of my uterus wall and fibroids growing.  Back in June my pelvic scan showed that I had a 5cm cyst on my left ovary.  I had a consult with the gyno at my local hospital (I reside in Broome) and her opinion was that the ovary should be removed but that I should consult with my oncologist with a view to her saying take both ovaries out.  I did speak very briefly with Arlene over the telephone.  She does not want me to have both ovaries out and if necessary only the one.  She said these side effects are normal when taking tamoxifen.  I then went back to see the gyno at the hospital who said that Arlene had put nothing in writing to them about the reasons why I should not have both ovaries removed and/or the uterus as well as there is a risk of endometrios cancer.  He said to come back in two weeks and they would write to Arlene again about the reasons why I shouldn't take everything out.  I just had another pelvic scan yesterday and the cyst on my left ovary has slightly shrunk but I now have a 3cm one on my right ovary.  I don't go back to see they gyno for another two weeks.  It is a slow process and I am still none the wiser but I feel I trust Arlene with how she is treating me and probably doesn't want everything removed because she doesn't want me to go into menopause for another five years.  At this stage I will just wait for my next gyno apt. 

Have you had any further side effects from the drug since March?  Please make sure that you have a pelvic ultrasound every 12 months because I kept feeling like I was going to get a period but it never came and in the end it was ovarian cysts and my uterus making me feel bloated and uncomfortable all the time.

So it's not all good on tamoxifen but if it stops me from getting breast cancer again that's great, I just don't want to get another type of cancer that is caused from this drug!!

All the best on your journey.

Kindest regards,

Sue :)