Hi Sue,
Firstly, sorry about not replying sooner....it's my busiest time of the year at the moment and I'm not on here all that often! (I'm an accountant so have tax returns galore to do at the moment!!).
Yes, I trust Arlene too. I am still getting periods at the moment. I turn 46 at Christmas this year, so similar age. When my periods started coming back, they were awful! I was flooding after about an hour or sometimes even less. I went to a gyno and ended up having endometrial ablation done which has reduced them to less than what I was getting before chemo (fantastic!!). Up until now they have been regular but are now stretching out to over 30 days between each one. Arlene did a blood test when I finished chemo and said that my ovaries were working normally and that I shouldn't have any problems....not sure about that! I did have a cyst on one of my ovaries when I first went to the gyno but he thinks that was just caused by the "explosion" of the egg releasing from it. It seems to have gone now. I have fibroids though which cause me a bit of grief. When I had the endometrial ablation he was able to get rid of 90% of the main one that was causing trouble. I am having 12 monthly ultrasounds now which is putting my mind at ease. I get a bit of pain, more like a bruising type feeling, in my uterus, which I think is the fibroids.
I am not getting any more side affects from the Tamoxifen. As I said, Arlene wasn't sure if I will stay on it after I finish in 2016....I guess we will have to see with that one. Maybe it will depend upon whether I am in menopause by then? Not sure, as I will be 48 then. My mum didn't go thru menopause until she was 52 but I know that chemo has stuffed me around so who knows??
After having BC twice, I don't want to take any chances so I'll go along with whatever Arlene has to say. She seems like she is on top of everything "cancer-wise" so I'm pretty happy with that. That said though, it is always good to get your doctor to ask her the question for you as I'm sure the GP/gyno would understand the reasons more than us!
Good luck,
Louise x
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 :)
I went to see my oncologist yesterday and mentioned the longer period of taking tamoxifen. She is a highly regarded oncologist in Perth (Prof Arlene Chan) and told me a couple of things to make me possibly change my mind on this. Firstly she said that, in some women, it has given them a better outcome BUT it increases the risk of blood clots and endometrial cancer two-fold if you take it for over the normal 5 years! Both of these are potentially life threatening conditions. She said that she will talk to me about options closer to when I come off the drug (January 2016) and by then there may be other alternatives. She did say that if I am in menopause by then (I am currently 45 and no sign of it yet!) then there is a different group of drugs that she would probably put me on which have none of the side affects.
I guess I will just wait and see what she suggests in 2016. At the moment, I seem to have no major side affects from the tamoxifen, other than the hot flushes, so I guess I am lucky :)
I went to see my oncologist yesterday and mentioned the longer period of taking tamoxifen. She is a highly regarded oncologist in Perth (Prof Arlene Chan) and told me a couple of things to make me possibly change my mind on this. Firstly she said that, in some women, it has given them a better outcome BUT it increases the risk of blood clots and endometrial cancer two-fold if you take it for over the normal 5 years! Both of these are potentially life threatening conditions. She said that she will talk to me about options closer to when I come off the drug (January 2016) and by then there may be other alternatives. She did say that if I am in menopause by then (I am currently 45 and no sign of it yet!) then there is a different group of drugs that she would probably put me on which have none of the side affects.
I guess I will just wait and see what she suggests in 2016. At the moment, I seem to have no major side affects from the tamoxifen, other than the hot flushes, so I guess I am lucky :)
