I spoke to my GP and Breast Care Nurse to see if there was I test I could have following chemo and prior to starting Tamoxifen to see whether chemo has left me infertile. They both said there weren’t any tests. I want to know for 2 reasons - is it worthwhile me coming off Tamoxifen after a couple of years to try for children rather than staying on the full 5 years if I am infertile and to use the next few years coming to terms with my infertility if I’ve been left infertile rather than having to wait for years to find out…
Today I called my local private fertility clinic who said they can do an ovarian scan and AMH test that should accurately tell me whether the chemo has left me infertile.
So…is it a case of the BCN and GP not being able to offer me anything on the NHS? Or is what they said true and the fertility clinic are offering me some expensive tests that might not be accurate? I’m happy to pay to find out (although terrified of the answer).
Any advice would be really appreciated as I don’t want to delay starting Tamoxifen for much longer.
Hi,
I personally haven’t had a test as I was Triple Negative, but during rads I met a lady who had had a similar type of test, because hers was hormone positive they did a test to confirm that she had gone into the menopause after chemo, otherwise they may have recommended ovarian ablation, I think. She said that they broke the news to her that the test showed that she was infertile, she was not concerned over the issue, but was surprised that they hadn’t mentioned it prior to treatment.
Hopefully someone else will come along who has more experience of this.
We have a factsheet on the subject of fertility issues, if you haven’t already seen it, here’s the link to the page where it can be either downloaded or ordered:
Hi Sandytoes (great name),
This is a bit outside my area of experience but I think you should get GP referral to gynacolgist-I had hormonal problems post-chemo. and then a brca1 diagnosis. To cut a long story short, it turned out that none of the team who treated my breast cancer really knew how to treat the hormonal problems, and my oncologist wanted me to be sure that I could not have more children before planning having my ovaries out. When I finally saw the gynacologist, he explained my difficulties to me and was also able to help.
I hope all this makes sense, but I think before parting with money to fertility clinic (who may not take into account your treatment) you need to get an impartial perspctive. You can then alway get a second opinion, or see someone privately.
Good luck, xx Rattles
I would be seeing a proper gynaecologist at the clinic and they know about my treatment as I saw them prior to chemo (referred, so didn’t have to pay) about egg harvesting but they advised against it due to me being ER+.
I’m meant to have already started Tamoxifen and don’t want to delay it fighting with my GP to refer me when I’ve already been told that there’s nothing he can do. He told me it was a case of “wait and see” after Tamoxifen. I’d rather know before starting if at all possible and will pay (it’s not a totally ridiculous amount - £120 - obv could do without it seeing as I’m not working etc) to get a quick answer (they can do it tomorrow and then I can start Tamoxifen on Wednesday) and I don’t want to delay treatment by having to apply to my PCT and then waiting for an NHS appointment which could be weeks and weeks.
It was more whether it was an accurate test and whether you can get false negatives or positives as, if so, then it wouldn’t have clarified anything and would leave me in just as much limbo as I am now and wouldn’t make treatment options any easier down the line…
Hi,
I did have eggs frozen before chemo, they managed to get 7, it is odd as I think about them whenever I pass the hospital.
My periods only stopped briefly and returned a couple of months after chemo, but they now seem to be getting shorter, about 16 day cycle. My mum said this happened to her before menopause (which she had at 36), so I may not have escaped early menopause (I’m now 35).
I have my follow up appointment on Friday, so am going to ask whether I should see someone about it.
Hope you manage to get some more info to help with your decision.
I had an AMH test - a few years after finishing chemo. I was hormone negative so wasn’t on tamoxifen but my FSH (follicle stiumlating hormone) test showed it was 87 which my oncologist said meant I was post menopausal so couldn’t have children. I was referred to a gynae to confirm diagnosis who sent me for a private AMH test as they don’t do them as routine on NHS and they are considered pretty accurate (I think 70% but might be worth checking that). My AMH showed I had undetectable fertility -0.07. And I was absolutely devastated. As I was still having “periods” I was referred for a biopsy as they thought there was something wrong with womb lining/uterus and then they discovered I was in fact pregnant - very much against the odds I hasten to add.
It is a very difficult decision to make, particularly at this stage when you’re coping with so much already. Think about it carefully and speak to the clinic in detail about what your options might be depending on what the AMH test shows. They can do something called natural cycle IVF where they harvest an egg as a natural part of your cycle without the need for hormones, but if you’re close to treatment ending it could take time for everything to settle down.
I’m way off finishing treatment! 5 years of Tamoxifen to go. I wont be able to have any tests whilst on Tamoxifen, but wanted to find out before I started Tamoxifen to avoid the headaches involved when ladies are deciding whether to finish Tamoxifen early to try for a family (oncologists recommend at least 2 years on Tamoxifen and then will discuss risks of coming off to try for children. But there would be no point in finishing treatment early if the chemo’s left you infertile. I would prefer to finish the full 5 years, but feel that my fertility has a bearing on my future. Assuming and hoping that the cancer doesn’t come back and bite me on the a*se (and I know it could do - but am going to do my very best to live life as if it’s not going to - it would be a waste if you lived your life waiting for it…and then it never came back) I feel as though I need to know my chances of having a family in the future so that I can make decisions for the next few years. For example, before I was diagnosed I’d started doing an accountancy course so I could do book-keeping etc from home when I had a family…however, if I’m not going to have a family, I would much rather work WITH people, rather than from home, so would completely rethink my career change.
Sorry! Waffling now! Just thought I would explain in case any other young 'uns stumble across this thread in the future and can identify with it. I’m going to see a doctor at the fertility clinic tomorrow to discuss options, have any tests they think can give an indication of fertility having just finished chemo - and will then tuck into the Tamoxifen packet!
One of the comments my dr at the IVF clinic made was that I hadn’t had an AMH test done prior to arriving which she had wanted. Yet the same clinic is the one that told me to go to my GP and get blood taken and tested for LH, FSH and E2 only - no mention of AMH! I think if there had there wouldn’t have been an issue in getting it done, they just needed to know what to write on the blood form for analysis.
With all of the tests apparently I should have been tested on day 3 of my cycle (I wasn’t) as the levels of each hormone flucutate throughout the cycle. So a value on day 3 doesn’t necessarily have the same meaning as the same value taken on day 16 of the cycle. I’ll PM you link to diagram and explanation about this. They also recommend testing again a month or so later for comparison.
My first FSH on 2nd March (6 months post-chemo and a few days before my periods actually restarted) was 9.4 which combined with oestrogen levels was sufficient for my gynaecologist to refer me to the IVF clinic.
I had to do the tests again in July and I don’t have a copy of those (must get) but the IVF doctor didn’t think my levels were great
Not sure if any of that helps given you mentioned seeing the fertility clinic today - hopefully you got some answers.
