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[GypsyRoseLee]

Very long story short, history of PMDD, followed by PND, followed by horrendous depression & anxiety in the peri menopause. I became suicidal and ended up under the Crisis Team who were useless. Then found my way here and through here, ended up under Prof John Stuff who saved me.

All was good for the next 4 years, apart from the occasional nasty slump. Then was diagnosed with very early BC. Had surgery + radiotherapy + Tamoxifen and had to give up HRT. Was terrified of ending up suicidal again but very surprisingly I weaned off it and was okay. All was good for next 2.5 years apart from the occasional nasty dip, but I mainly coped fine with no HRT (except testosterone) and taking Tamoxifen, and my periods were light but still regular.

But, I haven't had a period now since May and I'm feeling increasingly worse. Nasty joint pain. Bloating. Swollen fingers. But worst of all my nemesis of very low mood + anxiety keeps rearing its friggin head. Since May my nasty mood slumps are getting progressively more frequent, my run of 'good days' getting less and less. It's ruining so much of my day to day life and I'm getting scared. I already take 100mg Sertraline to help with the hot flushes.

I know that Tamoxifen can interact negatively with Serotonin especially in women with a history of PMDD and PND. And I *know* I need some estrogen to feel okay in myself. But if my periods have stopped that means my estrogen has finally tanked and what tiny bit might be left will be blocked by Tamoxifen.

Does that make sense? Even my oncologist has admitted that Tamoxifen is only of very little benefit to me (less than 1%). So I'm thinking of having a break from it to see if these awful side effects stop. Sorry to waffle on for so long but it helps to lay it all out and I know how incredibly knowledgeable and supportive this place is x

[Dotty]

Hello 👋 GypsyRoseLee….nice to hear from you again.

I have no knowledge of breast cancer and hrt I’m afraid, but all I can say is that my symptoms got a lot worse in post menopause. I think your oestrogen levels continue to drop a long time after your last period, so it could be that your oestrogen levels are still dropping. I got worse 3 years after my last period. x

[CLKD]

Hi!  Sorry that after getting some stability that you have been faced with breast cancer.

I stopped 'tamoxifen' as it nearly killed me in 1990s.  It heightened my sense of smell which stopped me eating [long story short].  After 3-4 months: because it was a precautionary treatment: I wasn't prepared to continue.

Could you take anti-depressant and/or anti-anxiety medications, regardless of the Tamoxifen.  Nothing like not taking other meds with that was explained.  This may be a more recent discovery. 

Periods waxing and waning = perimenopause.  With all its ups and downs.  There is a thought that regardless of having had breast treatment, 1 should continue with a dose of oestrogen ........ I can't remember the Consultant's name off the top of my head.  Certainly, if HRT is so dangerous, why aren't we advised to have bilateral mastectomy knowing that a huge % of women will require replacement?

How do U feel overall?  Tamoxifen can also cause womb cancer ......... was that explained to you?  See how you feel by stopping, keeping a mood/food/symptom diary to chart progress.  Let us know how you get on!

[GypsyRoseLee]

Hello 👋 GypsyRoseLee….nice to hear from you again.

I have no knowledge of breast cancer and hrt I’m afraid, but all I can say is that my symptoms got a lot worse in post menopause. I think your oestrogen levels continue to drop a long time after your last period, so it could be that your oestrogen levels are still dropping. I got worse 3 years after my last period. x

Hi Dotty. Nice to see you again. Have your symptoms improved at all? Has HRT helped you at all.

[GypsyRoseLee]

Hi!  Sorry that after getting some stability that you have been faced with breast cancer.

I stopped 'tamoxifen' as it nearly killed me in 1990s.  It heightened my sense of smell which stopped me eating [long story short].  After 3-4 months: because it was a precautionary treatment: I wasn't prepared to continue.

Could you take anti-depressant and/or anti-anxiety medications, regardless of the Tamoxifen.  Nothing like not taking other meds with that was explained.  This may be a more recent discovery. 

Periods waxing and waning = perimenopause.  With all its ups and downs.  There is a thought that regardless of having had breast treatment, 1 should continue with a dose of oestrogen ........ I can't remember the Consultant's name off the top of my head.  Certainly, if HRT is so dangerous, why aren't we advised to have bilateral mastectomy knowing that a huge % of women will require replacement?

How do U feel overall?  Tamoxifen can also cause womb cancer ......... was that explained to you?  See how you feel by stopping, keeping a mood/food/symptom diary to chart progress.  Let us know how you get on!

Hi CLKD. Lovely to hear from you. I have been on Sertraline for about 6 years. I genuinely believe it was a combination of starting it + HRT saved me. Prof Stuff told me that sometimes women really do need both.

I'm going to have a 6 week break from Tamoxifen and see how I go on. If nothing improves then there is the option to increase my AD dose, I guess. I have recently read that hormone fluctuations can disrupt SSRIs activity on serotonin in your brain. I think this explains a lot because ADs don't randomly just stop working for 2 weeks to then magically just start again.

[Hurdity]

Hi GypsyRoseLee

Good to hear from you but sorry to hear about the breast cancer as well as your ongoing symptoms.

First - re the anti-depressants - some years ago there was a paper produced about the effectiveness of different types in combatting hot flushes for those who are unable to take HRT, and especially following breast cancer, and also in  conjunction with Tamoxifen. I haven't checked whether there has been an update since but you might find it interesting/useful if you haven't seen it already? Here is the link to the message about this and the paper which I copied in full: https://www.menopausematters.co.uk/forum/index.php/topic,45003.msg723280.html#msg723280 and I'll also bump it for you and anyone else who is interested.

Second - as per Dotty oestrogen levels fall sharply for around two years following the last period when it stabilises at a lower level ( though some is still produced - we are women after all ) but from what I understand and have read about the stages of reproductive ageing there may still be some fluctuation - though of course nothing like in peri or in our fertile years.

Re your symptoms - it must be frustrating that sertraline is not helping your mood because ideally if you are unable to take oestrogen due to BC ( though I gather this is controversial) it would help with both flushes and mood. As above perhaps a different preparation might suit you? The symptoms of join pain - yes that is a typical menopause symptom but not sure of other alternative treatments that are proven to help. Bloating and puffiness/swollen fingers - I don't think these are menopausal symptoms but potentially side effects from the Tamoxifen? As they are physical symptoms I presume you have had these checked out?

Re taking testosterone - if you are still taking this only and intend to continue then I imagine you are being monitored. because as your oestrogen levels fall over the coming months ( if you have reached menopause) then the balance between T and oestrogen will change and you won't want to become more T dominant than is usual in post-menopause? I have no idea how it interacts with Tamoxifen or sertraline though I doubt it has been studied in women?

Anyway wishing you all the best and hope you manage to resolve your symptoms - do keep us informed.

Hurdity x

[Dotty]

Hi GypsyRoseLee…hrt got rid of all my horrific symptoms and I’m still on 4 pumps of Oestrogel 5 years later.  My symptoms were awful, both physical and mental. I was very poorly. It took a while to get things right, but eventually I got there with the help of a private specialist. xxx

[Kathleen]

Hello GypsyRoseLee


I remember you from back in the day!

Actually I think I sent you a pm about a year ago asking if you wouldn't mind updating the forum about your experiences. I thought your journey might be of interest to everyone  and especially the ladies who had commented on your posts while you were struggling.

It's a shame that you are having problems again but fortunately there are still many ladies here to help and advise you.


Take care.

K.

[Wrensong]

Hi GypsyRoseLee, it's good to see you here again, though I'm sorry to know of the worry you now have.  The dilemma for symptomatic women at menopause & the use of HRT after breast cancer have quite recently been discussed on a couple of threads started by Ann B you may like to look at.  Some of the lengthy posts & links were frustratingly lost to a technical glitch that wiped out posts & PMs over several days in August, but there is still quite a bit you may like to see.

The 2 threads are called "Avrum Bluming - American Oncologist - HRT After BC" & "The use of vaginal oestrogen post-breast cancer".  The discussion on the 2nd thread is not confined to vaginal HRT.

I'm pasting in here an extract from the first thread as it contains a list of podcasts you may not have already heard that might be helpful.  I didn't include the links to these four articles on that thread as as some contain commercial content.

1) Taking HRT after breast cancer with Dr Tina Peers
The Latte Lounge

2) Postcards from Midlife
How to live a longer happier & healthier life with Dame Lesley Regan (interview starts 29 minutes in; HRT discussion starts 43 mins in)

3) Dr Louise Newson podcast no 138
Explaining what the evidence shows to offer choice to women after breast cancer, with Avrum Bluming

4) Dr Louise Newson podcast no 051 - Breast Cancer & Menopause - Dr Tony Branson

There are several other interviews on menopause & breast cancer with various authorities in the Newson Health podcast series.

There is also a Newson Heath leaflet here:-

Newson Health Guide to all things Menopause for women after breast cancer
https://d2931px9t312xa.cloudfront.net/menopausedoctor/files/information/601/Been%20through%20breast%20cancer%20(with%20links).pdf

and a BMS link here including a short section headed Symptomatic women with previous breast cancer:-

https://thebms.org.uk/wp-content/uploads/2022/12/12-BMS-TfC-Fast-Facts-HRT-and-Breast-Cancer-Risk-NOV2022-A.pdf

Lastly, among various others on this BMS TV link, a podcast from Dr Paula Briggs entitled "Post cancer treatments".

https://thebms.org.uk/publications/bms-tv/

I hope I haven't duplicated anything & that the links work.

Wx

[CLKD]

 

[GypsyRoseLee]

Hi Hurdity. As always a hugely informative and helpful post, thank you. Overall, I think Sertraline works very well for me until it doesn't - I don't think it fares well (and basically stops working) when I get these random hormonal changes. And from my reading I think this would be the case for any SSRIs. I am monitored for my T levels by my GP and whilst they're high it's not enough to have me shaving my chin every day.

Interestingly, within 24 hours of stopping Tamoxifen my mood improved massively, and 2 days later is still good - and no joint pain.

I have recently done some reading into the existence of the 'PMDD gene' known as the ESC/E(Z) network. Lots of studies show that women who suffer with PMDD and PND have an abnormal expression of this gene network - and an unusually severe reaction to hormonal fluctuations. I believe that so many of us on here who struggle so horribly with the depression and anxiety during peri menopause and menopause most likely have this abnormal gene network. It explains so much. And proves that it is our specific biology that we have no control over.

[GypsyRoseLee]

Hello GypsyRoseLee


I remember you from back in the day!

Actually I think I sent you a pm about a year ago asking if you wouldn't mind updating the forum about your experiences. I thought your journey might be of interest to everyone  and especially the ladies who had commented on your posts while you were struggling.

It's a shame that you are having problems again but fortunately there are still many ladies here to help and advise you.


Take care.

K.

Hi Kathleen. I remember you very fondly. For a long time I forgot my log in password for here so couldn't read my PMs but I'm very happy to speak about my experiences if it will help others x

[GypsyRoseLee]

Hi Wrensong. Lovely to hear from you again. I'm excited to read all those links and I can't thank you enough for taking the time to post so helpfully. People on here are so incredibly supportive. Let me read through them and get back to you. Thank you again x

[Mary G]

GRL, it's good to hear from you again but sorry to hear you are faced with the BC/Tamoxifen/HRT challenge.

Wrensong has provided some good links but ultimately, I think this is one for a menopause specialist.  I would definitely read all available material and then seek out a sympathetic specialist.  The late, great Professor Studd prescribed HRT to women with a history of BC so it might be worth contacting his successors at his old practice - I think telephone appointments are available. 

Obviously you want a balanced and unbiased view but be prepared for doctors to disagree on this one - in my experience, doctors often disagree on treatment strategy.  Oncologists will instinctively say no to HRT.

Ultimately, you will make the decision going forward and it sounds like it's time to ditch the Tamoxifen but what type of oestrogen (if any) you decide to take needs careful consideration but perhaps something like a very low dose Menostar patch would be an option.

Please let us know how you get on.

[Kathleen]

Hello again GypsyRoseLee


I am so pleased that you were able to re connect with the forum when you felt the need.

I cannot add to the helpful comments given to you by the other ladies but I hope you find a successful regime and please let us know how you get on.

Take care.

K.