I’ve now been on tamoxifen since April. I’m premenopausal so I have had periods regularly, but my last one was at the end of June.
I also have a history of ovarian cysts which they think was a side effect of my coil at the time, but the same ovary pain has come back again and with the absence of periods I have been referred for another ultrasound.
Another concern of mine was that I paid for a female hormone test and my numbers were really strange, my oestrogen levels were off the chart! 10088 pmol/l
Since my diagnosis I have lost 2 stone and changed my diet and I exercise lots, all in the hope that I can reduce my levels but I’m assuming it is this cyst that is causing this, and that the tamoxifen is making things worse in that area. It is causing me to worry.
I rang my breast care team and so far on this journey they’ve been fantastic, but this last nurse I spoke to said she had no clue and suggest I speak to my GP.
Who am I supposed to talk to? I assumed it is the surgeon who prescribed me tamoxifen?
Anyway, sorry for my ramblings, just reaching out to anyone who has experienced anything similar. Xx
Dear @zazzle03, Im glad to hear you are getting an ultrasound to investigate your pelvic pain. Very sensible. Ive had something similar but not the same… Letrozole increased my oestrogen in the reproductive department causing me to grow another fibroid, to develop endometriosis, and an ovarian cyst. I asked my GP to refer me to gynaecology which she did. I also considered changing to another type of hormone therapy and discussed this with the gynaecologist. He told me to put Tamoxifen right at the bottom of any list of options. However I am 68 years old and post menopausal. The gynae dept ordered a pelvic mri and have now put me on quarterly surveillance. My oncologist was only interested in my cancer and not other areas of health!
So you may wish to consider seeing a gynaecologist. I decided to come off Letrozole but that was a very personal decision and not one recommended by my treatment team.
Finding this topic interesting as I’ve always had hormonal challenges & endometriosis pre breast cancer & am certain there’s a link for me.
I too, did a hormonal test pre diagnosis and my testosterone was off the chart. I paid privately for this and the gynaecologist was frustrated by this and kept trying to put me on the coil or hrt. Everytime i have asked the oncologists about this they skirt around the question. I am also going to be prescribed tamoxifen.
The GP did tell me that once the ultrasound has been done they will refer me to the gynaecologist as it was already on the back burner from when I had cysts before.
They were waiting to see if I had the brca gene and if so they’d remove my ovaries, but I’m not elegible for genetic testing so the referral stalled.
Glad to see they are checking you regularly, I do think we have to be super vigilant and be alert for these changes. They seem very common. X
I also have a fibroid that was seen on my last ultrasound in April, so my hormones are a bit out of whack I think. Not sure if that was from my coil (which was removed at diagnosis).
My testosterone came back at 5.3 nmol/l which is high too. I’m not sure what they can do about that though.
I’m not having any other side effects from tamoxifen so far, but I’m worried about it causing these gynae problems for the next 10 years that I’m on it. X
You need to see an gynecologist first to do the ultrasound and see what the cyst looks like and whether it’s still there. If he/she can’t determine for sure the cyst is causing your high levels then your next bet is an endocrinologist to look at all your hormones together and figure out what’s wrong. I recently had some issues with rising estrogen after my ovarian removal and my oncologist and surgeon referred me elsewhere since weird hormone issues aren’t their area of expertise.
Just a quick update - I had an ultrasound yesterday and I have another cyst which is around 6cm, so like I thought this is what is causing my super high oestrogen levels.
They will refer me back to my GP with the recommendation of getting it removed, but I’ll see what the GP says. I am hoping it will go away like the other ones have.
I’ll also push for a referral off the back of this too.
Just an update to this message in case anyone is having issues with hormone levels whilst on tamoxifen.
I have just been retested for both testosterone and oestrogen and the levels are back into the normal range. I’ve been on tamoxifen since April and the gynaecologist explained that sometimes it can take a few months for everything to settle down. I was given an option of removing my ovaries but this has been shelved for now.
It has given me a better picture of where I am now going into my annual mri/mammogram.