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Managing Medications through the Menopause

11 REPLIES 11
jaynemc
Member

Re: Managing Medications through the Menopause

Hi there Michele - Many thanks for your reply + hope you are well x

Yes please do post an update when you've had your review in August - it will be interesting to hear how they have advised you. I also am not too crazy about AI's either due to the potential bone issues - can't say I'm crazy about Tamoxifen either but after 3 years on it I'd rather take it than not take it just for some sort of peace of mind.

I haven't looked at Predict since 2019 when I was diagnosed. I think I'll take a look and see what it says.

Yes I had read that Tamoxifen was good for both pre + post menopausal women but I had also read that an AI was slightly better if you were definitely post menopausal. The margins are not great - they do not say that an AI is massively better just a bit better. 

Having slept on what the BCN said to me yesterday I think I'm going to see how it goes again with the old time of the month - if I get to 12 months again (later this year) without a period then I'll request blood tests and do those again. Then I can decide if to stay on Tamoxifen or switch to an AI.

Thanks for sharing experiences - all the best x

 

Optimisticmz
Member

Re: Managing Medications through the Menopause

Hi Jaynemc Thanks for resurrecting this thread and lovely to hear from you. No changes for me. I am coming up for my 5 year and final review in the summer so it will be interesting to hear what my consultant says in respect of hormone treatment. My understanding is that tamoxifen is suitable for pre and post menopausal women. I am not keen to take an alternative AI as my Mum has very bad bone issues. The only other thing I stumbled on is that the "Predict" website has been updated with the findings from staying on Tamoxifen for a further 5 years (total of 10 years). Interestingly, based on my personal details, it reports that there is zero benefit for staying on Tamoxifen for a further 5 years. I will update you when I see the consultant in August. Michele x
jaynemc
Member

Re: Managing Medications through the Menopause

Bit of a thread revival here folks 

Just thought I would post in case any of you lovely people are in the same boat as me and navigating the tricky journey to gaining that badge that says 'post monopausal' 😄

So I'm 54 now and have been on Tamoxifen since 2019 when I had ER+ breast cancer. 

Back then I was having regular periods - now I don't really have any - I've had some big gaps with nothing (longest 11 months - currently up to 7 months). I had the 4 blood tests last year to see if I was post menopausal - 3 of the tests said I was the 4th one said I wasn't.

I spoke to my Breast Care Nurse today and asked if we could do blood tests again with a view to switching to an AI if I am post menopausal. This time the response was that I should just stay on Tamoxifen for a full 5 years regardless of menopausal status. That to me seems like a blanket approach. That would take me to summer of 2024 when I'd be age 56. 

The BCN said this is the latest medical thinking on this. I don't quite know what to make of it or who else to ask for an opinion. 

carla.andresco
Member

Re: Managing Medications through the Menopause

Thank you for posting this. My menopause was induced by the chemotherapy in 2017, when I was 51, following a stage 2 breast cancer. I have been on endocrine therapy Tamoxifen since. My oncologist tried to pass me on anastrazole after 2 years of Tamoxifen in 2019, it was okay for the first 3-4 weeks, but after that all my body was so stiff, I had unbearable pains in my arms and restless legs at night, feeling tired and mentally exhausted, I had to stop it. They put me back on Tamoxifen which I can tolerate and said that this would still protect me even after menopause. My problem now is whether to stop it or to carry on for another 5 years after the first 5, as the oncologist suggested. I was discharged 2 years ago though so I will have ask my GP to discuss this with an oncologist when the time comes. Menopause was truly horrible, better now that I am postmenopausal although feeling fairly flat at times (at least not exhausting like when I had swinging moods),  Sometimes I think that I might feel better stopping the Tamoxifen, letting some of the good hormones recover, but it is a tricky decision

jaynemc
Member

Re: Managing Medications through the Menopause

Hello everybody x

Just resurrecting this thread as I'm still navigating my way through endocrine therapy and the lovely wonderful menopause 😎

I'm age 53 + 4 months now and have been on Tamoxifen for 2 years following breast cancer in 2019 so a few months back my BCN wanted to know if I have had the menopause (no sign of a period for quite a while) and if so then I would go onto an AI.

So I have just managed 9 weeks off Tamoxifen - this time it was much easier to stop it my head was in the right place (the 1st time I tried to stop it I lasted 18 days before I started taking it again - see my 1st post here). Didn't really notice any side effects/withdrawal from stopping Tamoxifen and at the end of the 9 weeks I felt a bit better without it - not a huge difference for me though as I think a lot of the way I feel at the mo is down to the natural menopause anyway. I certainly tick all the boxes - hot flushes, fatigue, mood swings, aching joints, brain fog ...... 

So I had the blood tests to test for ovarian function (FSH, LH, Oestradiol) - blood tests at week 6 off Tamoxifen and again at week 9 - and the results were ......... inconclusive 🙄😁

Just so typical of me that! 😅

My BCN says that each test has to meet their criteria for showing I'm post menopausal - some of my test results did and the others didn't - so on that basis I'm straight back on the Tamoxifen for another 6 months and then we repeat the same exercise.

Hope this helps some of you out there in a similar situation x

 

jaynemc
Member

Re: Managing Medications through the Menopause

Hi there Kitkat,

Many thanks again for your reply x

How your onc + team went about it with you sounds very similar to what was proposed for me ..... you may be post menopausal lets do the blood tests, come off Tamoxifen then have 1st blood test at 6 to 8 weeks then 2nd blood test several weeks after that. 

Good to know you are definitely through the menopause when you start an AI though.

Thanks for sharing - take care x

Kitkat23
Member

Re: Managing Medications through the Menopause

Hi Jay

im 55.....so was 53 when I went on tamoxifen and was still having periods albeit not regularly...my Onc said that the menopause blood test is only reliable if I was off tamoxifen for 6 to 8 weeks......then I had a follow up blood test 8 weeks after this ( protocol at my hospital) by that time I had nearly finished chemo so was able to start letrozole confident that I was menopausal....I think I would have been menopausal even without tamoxifen as I’m 55 now....but Onc said she couldn’t risk starting an AI without confirmation.

take good care

jaynemc
Member

Re: Managing Medications through the Menopause

Hi there Kitkat,

Many thanks for your reply and sharing your experience here x 

It sounds like you have really been through it having had a recurrence and just 2 years later - life can certainly dish out some tough times. How old are you now if you don't mind me asking? I was just reading the average age for the menopause in the UK is just 51. I'm 53 next month but having been on Prostap for over a year I've not had any periods during that time as they stopped as soon as I started Prostap.

Interesting to hear that you were given blood tests and they were obviously reliable for you and did in fact show that you were post menopausal. At least now you are on Letrozole which would seem to be right for you given your blood test results. 

Hope everything goes ok now - many thanks again and all the best with it x

jaynemc
Member

Re: Managing Medications through the Menopause

HI there Michele

Many thanks for your reply and lovely to hear from you again hope you are ok x Sorry to hear that stopping Zoladex hasn't stopped your side effects that really isn't very fair at all. I know a combination of Zoladex (or Prostap in my case same thing) + Tamoxifen is quite a tough call - I certainly have found it to be and I think that's why my breast care team don't recommend it routinely. 

I have also heard people say that measurement of a woman's ovarian hormone profile via blood tests isn't reliable but have also heard the opposite just as many times as well and it really is the best science we have for it at the moment. Its interesting that they are letting you get to age 55 and you are still on Tamoxifen. I'm not sure I would be entirely happy with that given the average age for the menopause is a few years earlier than that. You may be right you may be the same as your sisters with a late menopause but if you are in fact post menopausal then Tamoxifen would not be prescribed and you would be on an AI. This is how I feel about making sure I'm on the right medication and getting optimal endocrine therapy. 

We are in exactly the same territory - how long are you going to wait to see if periods reappear? Sounds like you have gone 3 months so far? That seems like a reasonable amount of time to me to say the Zoladex will be out of your system and oestradiol levels be allowed to return if they were going to. On that basis if you really wanted I would push for the blood tests on the grounds that you are not happy with being potentially post menopausal and taking Tamoxifen. I would have  no problem in my breast care team agreeing to the blood tests - my problem is me stopping taking Tamoxifen for the 9 weeks they requested - felt a bit like jumping out of a plane without a parachute.

Let us know how you get on and all the best with it. Take care x

 

Kitkat23
Member

Re: Managing Medications through the Menopause

Hi Jay 

I can’t comment on your experience but just adding my own.....

I was on tamoxifen for 2 years In 2018 for a 4/8 ER+ non invasive DCIS ..... unfortunately I developed another primary ( in other breast ) In 2020 so came off tamoxifen on advice of Onc whilst I had surgery etc and 8 weeks later had blood test which confirmed I am now menopausal - this new cancer is invasive 1.2cm ER+ 8/8 1 positive node.... however, unlike you,  I have had both chemo and rads.....I’m now on letrozole which I’m hoping will be more effective than tamoxifen at reducing the risk of a further recurrence.

I hope everything works out for you

 

Optimisticmz
Member

Re: Managing Medications through the Menopause

Hello Jaynemc. Thank you for starting this thread and its interesting to hear other ladies experiences. I know I replied to you on another thread. My diagnosis is very similar but I am a couple of years ahead of you. Diagnosed 2017 at 51. IDC 15mm PR/ER strongly positive. Lymph node involvement. Joined OPTIMA trial and outcome was go straight from surgery to radiotherapy and tamoxifen. As part of the trial it was a requirement to go on monthly Zoladex injections for 3 years (I was still having monthly periods at diagnosis)

When I had my Annual review last year I asked the surgeon if my hormone levels get tested and he said no, just stop the injections. When I went to the GP for my final injection she also refused my request to have a test saying they are not reliable. My last injection was in November and would have been out of my system by mid December. I haven't noticed any easing of side effects from stopping zoladex 😞

My understanding is that I might be switched to an AI at my 5 year Anniversary?? I did feel like I had PMT last week but no sign (yet) of a monthly bleed. My sisters both had a late menopause so it is interesting to know that other ladies are being offered testing. Michele x

jaynemc
Member

Managing Medications through the Menopause

Hello everybody,

I thought I would start this post and share my experience so far of trying to navigate a pathway through the menopause whilst trying to ensure I am on the optimal endocrine therapy. Its not been easy so far and I appreciate there are different ways to go about managing this - hence why its so useful to be able to discuss it with you all here and to also hear your thoughts + experiences is really helpful.

I was diagnosed April 2019 at age 51 and had a 30mm tumour removed with spread to 2 lymph nodes so then full node clearance which was all clear - Er 8/8 Pr 8/8 - 15 sessions of radiotherapy - no chemo (oncotype score of 8). Breast care team put me on Tamoxifen as I was still having periods. I did a lot of research and decided I wanted to also be on Prostap (same as Zoladex). Breast care team didn't support this at all so I went to my GP and he was in favour and we started 3 monthly injections. Periods stopped instantly + welcome to full on immediate menopausal symptoms but at least my head was in the right place knowing that my estrogen levels were now on the floor. I have a history of very bad dysmenorrhea from age 15 so I needed that peace of mind. 

Fast forward to earlier this year and one of the breast surgeons phones me completely out of the blue to say she had got my message that I wanted to speak to her - well I didn't and there hadn't been any message from me - I was quite happy doing what I was doing. So we had a bit of a chat anyway and I told her I was quite happy on Tamoxifen + Prostap. Oops that went down well - there was no mention on my records I was on Prostap she claimed my GP had not told them. In fact he had as I got in touch with him + received a copy of the letter he had written to them when I 1st started on Prostap - they just never got the memo as they say! 

So she wasn't best pleased and said that I'm just about 53 now so they wanted to know if I'm through the menopause so that I can switch from Tamoxifen to an AI. That means I should not have any further Prostap injections + stop taking Tamoxifen. They had decided I should stop taking Tamoxifen for 9 weeks in total - at week 6 there would be a blood test + then another at week 9 - these blood tests are for ovarian function (oestradiol, FSH, LH). I agreed to this and on 1st Feb as instructed I stopped taking Tamoxifen. I lasted 18 days then I started taking it again. I didn't expect it to be that difficult but it really did mess with my head - my BCN was so lovely + so very supportive she knew I was struggling. She went back to the team + they accepted (reluctantly) my decision. 

The difficulty I have with what they have asked me to do is the timing of all this - the 1st blood test was scheduled for 15th March - that's the day my 3 monthly Prostap injection would be due. I sought advice from my GP and we both thought my estrogen levels would be very low at that point and even 3 weeks later for the blood test at week 9. This potentially leads to misleading results where I could be put on an AI but then some ovarian function may return as the Prostap wears off completely. Also I have only been taking Prostap since Jan 2020 and at that point periods were still pretty regular. So my breast care team are expecting I will have got thru the menopause + be done + dusted with it in just over 12 months? Maybe but then maybe not.

So where I'm at right now following advice from my GP, discussions with the very helpful breast care nurses here, a chat with 'Someone like me' from here along with several private messages with lovely ladies on here x is that I am still taking Tamoxifen and will continue to do so for 3-6 months. As my next Prostap injection should be due on the 15th March (which I will not have) then the effects of the Prostap will slowly wear off and I will just see what happens. 

Its not easy making these decisions and I certainly haven't done this on my own. Maybe you have a similar experience or a complexly different one - do feel free to contribute x