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[Mary G]

Nas, you have been left in a terrible situation, what does your oncologist think you should do?  What do they suggest and how do they think you should cope with debilitating menopause symptoms?  At the very least they should be able to sanction the new non HRT drug.

The late Professor Studd prescribed HRT for women who had a history of BC (his clinic in Wimpole Street is still going strong) and if you Google it, you will find stuff he has written on the subject.  I managed to dig this out which I remember reading at the time:

https://www.telegraph.co.uk/health-fitness/body/ive-had-breast-cancer-but-it-wont-stop-me-taking-hrt/

Can you remind us which HRT regime you were using? 

[CLKD]

Menopause is a natural progression and not a disease!  However, it is obvious from these websites and Davina etc. talking about symptoms, that many suffer from a) symptoms and b) from un-educated medics.

Those that apparently 'sail' through either suffer in silence because they don't appear on MM forums or have GPs with knowledge, or like myself, have few bothersome symptoms.  I arrived here from the Ovacome magazine many years ago, knowing that menopause was the end of periods with a few hot flushes. 

As another aside I do wonder whether the NHS believes that women either don't have bothersome symptoms or that they deal well with using alternatives from H&B for example so 'there's no need' for research etc.. 

[Nas]

Thanks bomb, again, I appreciate your input, particularly as I feel so unheard (along with many) in real life.

The words which struck a chord, were about living being more than just being not dead. I could not agree more and I am bitter that my quality of life is just not considered. The medics knew I was on HRT for a reason and had seen a MS who agreed that I could be prescribed HRT based on my symptoms. Before the hysteretomy, why did they not think what it was going to be like once in surgical menopause with added hormone blockers? It is like adding a flame to petrol!

You have given me a huge plate of food for thought and for that, I thank you and will go away and think long and hard about how I wish to proceed with this.

Mary G, the oncology team would be very happy for me to succumb to the huge and wide range of anti d's, along with higher doses of over active bladder medication. In fairness to my own oncologist today, she did admit that she does not know how to help me. I have referred myself to a NHS meno clinic because the new non hormonal drug which I am on for vasomotor symptoms only, is not yet available on the NHS and comes at a handsome price of £186 for 3 months supply, which is unsustainable for me going forward.

Thankyou also for the link and other information. Again I will have a good read and try to make an informed choice on how I want to proceed. My reality is however, that hormones feed my cancer. But just to feel normal for even a month, would be so great. I often dream of how it would feel; no bladder issues, not having to pay for private meds, having an ounce of a libido again, being stable mood wise and so it goes on. I am also acutely aware that there are women on HRT who are yet to be symptom free and women who have given up and have found alternative interventions.

Anyway, we all have our struggles and that it why so many post on MM.
Time for reflection now 

[Seasidegirl]

Nas, two thoughts from me....

I was prescribed HRT via the Newson Clinic and for the first time felt "heard".  They have a list of GP's who have additional expertise with Breast Cancer.  Again I recognise that you are in a different place to me.   

Have you spoken to Macmillan regarding the cost of private meds?  I wonder if there is any funding.   Ditto do you have a local cancer support group who may be able to help?

Much love to you xx

[Nas]

Thanks Seasidegirl,
Today I did look at the criteria for the Macmillan grant, but on this occasion, I do not meet the criteria (it is means tested).

The oncologist did tell me that a new clinic was opening up, near to where I am treated and it is specifically aimed at women, like myself (and probably lots of others). This won't be until next year though. But I guess it does mean that they are recognising that this is a problem which isn't going to go away any time soon.

I also think that one of the issues is, that few women who have had a primary BC diagnosis, actually take HRT (and if they do, it is under strict lock and key held by a MS). I was always told from the outset " lowest dose possible" and my argument back was always "well what if the lowest dose possible, doesn't deal with symptoms?" I may as well be taking chocolate buttons or squirting myself with shower gel! Then of course, the womb cancer reared it's ugly head, followed by the metastic BC and that was it. I am cross because at some point, they knew the shi* was going to hit the fan, it was just a case of when! They knew that I wasn't on HRT for the fun of it and that I couldn't function without it. Now that moment has happened, no one wants to know!

I know there are women out there like me because I am part of a couple of social media groups. But it is rarely raised because as you rightly mention Seasidegirl, I/the ladies on the social media groups, are in a different situation to you now.

It is a difficult one and an area which just isn't discussed enough and as much as it may "terrify" some women and fuel their health anxiety further, it is a real issue which exists.

Thanks again Seasidegirl 

[CLKD]

I thought that MacMillan donated £250.00 on request, regardless 

[bombsh3ll]

Is duavee (premarin and bazedoxifene) an option for you?

It is seemingly anti-estrogenic on breast tissue.

It may only be available abroad but a couple of months' supply of fezolinitant would probably cover travel etc. or you could get a private script here and get it shipped.

I did 2 rounds of IVF abroad and the logistics of meds and prescriptions were do-able (although that was pre-brexit)

I know bazedoxifene is being explored within the BRCA 1 +2 community. Unfortunately it only comes with premarin at present for commercial reasons (shifting the premarin that nobody now wants). But I'd still take it.

[ElkWarning]

So how did you go from 'feeling like dying' elkwarning to 'thriving'? In 4 years?

Did you wait it out and it got better?
Did you take alternative treatments?
Was this the time you were on Hrt?
Or was this when you were treated for autoimmune stuff (as mentioned in other threads)?

This is the problem for me. How do you 'get better' when feeling like you are dying on a daily basis?

It's also strange that many in this thread are calling this so called 'medicalisation' and so called panacea for HRT - when, across this forum, woman are complaining time and time again of being ignored by their GPs and their symptoms belittled.

And, I'll probably get in trouble again for not reading the article. But quite frankly, feeling as bad as I do at this stage in my life, words dont help me.

Firstly, Nas, I do hear you and I'm sorry that I don't have any answers. Bit of an odd suggestion, but have you tried searching specifically for research from Israel. Big BC awareness there.

Penguin, I feel like I understand your comments. Thank you for sharing with honesty.

To answer the questions:

Autoimmune stuff was before.

Felt like I was losing my mind and myself. Nothing ever got better. For example, I thought cycling to work would help me get fitter. It was hard at first and everyone said it would get easier after 3 months. It never got easier. I did it every day for 3 years. It was agony. I sweated like a pig. I kept putting weight on. I was permanently exhausted. I hated everything and everyone around me. I had no life and was hanging on by my fingernails at work. My idea of a good time was to spend while days in bed.

I went on HRT and wanted it to work so badly that I ended up believing it was, but my mental health was still deteriorating. I was getting into all sorts of problems at work, couldn't see eye to eye with my colleagues - even though it had all been fine for years before. I was becoming paranoid. Couldn't stand the sight of my husband. Constantly eaten up by anxiety. And my god, the rage. My blood pressure sky rocketed and they couldn't get it under control. HRT was withdrawn by the doctor. I went cold turkey.

A friend suggested I see a herbalist, so I did. I took those tinctures for weeks at a time. Another friend pointed me in the direction of a therapist and I found myself in weekly sessions.

Fast forward a few months and COVID hit. Suddenly I found myself at home. All of my inner turmoil was being played out in the chaos of the world around me. It was curiously comforting to watch everyone else experience a bit of my craziness, and something just clicked.

At first it was doing couch to 5k (speedy walking style) in deserted streets. Then I was eating better because it was no longer buried mouthfuls at my desk between interruptions. I got to know my husband again and realised I quite liked him. Crucially, I saw a pharmacologist, in May 2020, in a hospital overrun with COVID calculator. He took my blood pressure, found it was in normal parameters, and told me to stay there hell out of dodge and figure out what I wanted to do with my life that would make me happy and healthy.

I decided to restrain to be a teacher. All very spur of the moment, but everything was so bonkas at the time, it felt like I could be mad and weird and no one would bat an eyelid. Then I pushed the whole thing further at the point I decided to get my full motorbike licence - even though I was terrified of riding and had been trying to do this for years.

A much shorter answer is that suddenly I stopped being scared of dying because there was so much death around me. Something in me decided that I wanted to live, and this energy was totally propped up by my therapy.

I still have weekly therapy. I'll probably be in therapy for another 5 years. That support has also helped me fight for recognition of my other needs. I'm now NHS diagnosed as autistic with OCD and CPTSD. This opens doors, e.g. I get to receive dentistry via the special care dental service, I have adjustments at work, my therapy (although technically private) is funded.

As it goes, I do still have courses of treatment from the herbalist from time to time - most recent because I thought my energy levels were a bit haywire.

Sorry for the essay, but yeah, my breakthrough was finding two women (therapist and herbalist) who actually sodding well listened to me, and the value of their input was confirmed by a medical doctor (the pharmacologist). None of this happened overnight.

[Mary G]

Nas, as suggested Duavive might be worth a try.  I tried bazedoxifine with two pumps of Oestrogel years ago as an experiment but I had breakthrough bleeding because it was too much oestrogen for the bazedoxifine to cope with.  I noticed that my breasts felt empty while taking it so it must divert oestrogen away from that area as well as the womb of course.

I bought a box of Duavive but I didn't bother trying them because I instinctively knew they would be too weak for me back then but fortunately I managed to flog them to someone else because they were quite expensive at over €35.00. 

I would say it's worth considering.

[Nas]

Mary, it says Duavive is for women with a uterus? I’ve had a hysterectomy. Is it prescription only from GP?

[Mary G]

Nas, in the UK, Duavive would be prescription only like all HRT.

I found this which concludes that Duavive is safer on the breast than oestrogen/progesterone but the figures are negligible:

https://pmc.ncbi.nlm.nih.gov/articles/PMC10389232/

I doubt it is highly dangerous to take Duavive without a womb but I would check first. If it is declared to be unsafe for women without a womb, I would ask why.  The SERM will divert oestrogen away from the breasts (and the womb if you have one) and make it safer in theory. 

Have you tried searching for a menopause specialist who specialises in helping women with BC?

[Nas]

Mary, I did find a MS who was happy to prescribe with my history of primary BC. Now that I have secondary BC and on hormone blockers, it’s a non starter. The name of the game is to block all oestrogen from entering my body.

In truth, I’m going to have to suck it up. If this cancer goes AWOL from my lung, I’m on borrowed time!

That said, quality of life and all that.

[dangermouse]

So how did you go from 'feeling like dying' elkwarning to 'thriving'? In 4 years?

Did you wait it out and it got better?
Did you take alternative treatments?
Was this the time you were on Hrt?
Or was this when you were treated for autoimmune stuff (as mentioned in other threads)?

This is the problem for me. How do you 'get better' when feeling like you are dying on a daily basis?

It's also strange that many in this thread are calling this so called 'medicalisation' and so called panacea for HRT - when, across this forum, woman are complaining time and time again of being ignored by their GPs and their symptoms belittled.

And, I'll probably get in trouble again for not reading the article. But quite frankly, feeling as bad as I do at this stage in my life, words dont help me.

Firstly, Nas, I do hear you and I'm sorry that I don't have any answers. Bit of an odd suggestion, but have you tried searching specifically for research from Israel. Big BC awareness there.

Penguin, I feel like I understand your comments. Thank you for sharing with honesty.

To answer the questions:

Autoimmune stuff was before.

Felt like I was losing my mind and myself. Nothing ever got better. For example, I thought cycling to work would help me get fitter. It was hard at first and everyone said it would get easier after 3 months. It never got easier. I did it every day for 3 years. It was agony. I sweated like a pig. I kept putting weight on. I was permanently exhausted. I hated everything and everyone around me. I had no life and was hanging on by my fingernails at work. My idea of a good time was to spend while days in bed.

I went on HRT and wanted it to work so badly that I ended up believing it was, but my mental health was still deteriorating. I was getting into all sorts of problems at work, couldn't see eye to eye with my colleagues - even though it had all been fine for years before. I was becoming paranoid. Couldn't stand the sight of my husband. Constantly eaten up by anxiety. And my god, the rage. My blood pressure sky rocketed and they couldn't get it under control. HRT was withdrawn by the doctor. I went cold turkey.

A friend suggested I see a herbalist, so I did. I took those tinctures for weeks at a time. Another friend pointed me in the direction of a therapist and I found myself in weekly sessions.

Fast forward a few months and COVID hit. Suddenly I found myself at home. All of my inner turmoil was being played out in the chaos of the world around me. It was curiously comforting to watch everyone else experience a bit of my craziness, and something just clicked.

At first it was doing couch to 5k (speedy walking style) in deserted streets. Then I was eating better because it was no longer buried mouthfuls at my desk between interruptions. I got to know my husband again and realised I quite liked him. Crucially, I saw a pharmacologist, in May 2020, in a hospital overrun with COVID calculator. He took my blood pressure, found it was in normal parameters, and told me to stay there hell out of dodge and figure out what I wanted to do with my life that would make me happy and healthy.

I decided to restrain to be a teacher. All very spur of the moment, but everything was so bonkas at the time, it felt like I could be mad and weird and no one would bat an eyelid. Then I pushed the whole thing further at the point I decided to get my full motorbike licence - even though I was terrified of riding and had been trying to do this for years.

A much shorter answer is that suddenly I stopped being scared of dying because there was so much death around me. Something in me decided that I wanted to live, and this energy was totally propped up by my therapy.

I still have weekly therapy. I'll probably be in therapy for another 5 years. That support has also helped me fight for recognition of my other needs. I'm now NHS diagnosed as autistic with OCD and CPTSD. This opens doors, e.g. I get to receive dentistry via the special care dental service, I have adjustments at work, my therapy (although technically private) is funded.

As it goes, I do still have courses of treatment from the herbalist from time to time - most recent because I thought my energy levels were a bit haywire.

Sorry for the essay, but yeah, my breakthrough was finding two women (therapist and herbalist) who actually sodding well listened to me, and the value of their input was confirmed by a medical doctor (the pharmacologist). None of this happened overnight.

Thank you for sharing, it’s a very powerful story and shows the importance of taking a holistic view. You will make a fantastic teacher!

[CrispyChick]

Thank you Elkwarning.

A very detailed account  .

I'm so glad you've come out the other side, of not just the meno, but the place if left you in.

There is hope for us all. I'm seriously considering the AD route now as, despite feeling ill all the time, I know I'm fixating on it and maybe if I get to a place where I don't care as much, that would help.

Thanks. X

[Gnatty]

Nas, do have a think about Mirtazapine. If you can get some good sleep and sort out the anxiety everything else will be easier to cope with. x