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[Bj118]

Hello, am new and this is my first time posting.

Am so relieved that I found this forum as I have been really struggling with menopausal side effects and I thought I was going nutty.

I was diagnosed with breast cancer, have gone through mastectomy, chemotherapy and now on medication for 10 years. The treatment has pushed me in to immediate menopausal state.... at that time, didn't know what hit me as I was focusing on my treatment.

Have horrendous hot flushes, practically every hour, night sweats, joint aches, so very dry skin especially at lady's garden, mood swings, anxiety, etc, etc.

Looking forward to gain more info and support

[CLKD]

Welcome.

In the 1990s I had a lump removed which was oestrogen dominant but if I were having symptoms I would push for HRT.  Which medication were you given?  tamoxifen almost killed me  .

As oestrogen levels drop off the body may become dry: nostrils, deep in the ears, skin, vagina ......... have a read of the threads on vaginal atrophy and 'my bladder etc..'.   The muscles may become lax = aches and pains. 

Do read the treatment area in the green banner above.  There is an alternative section too.  Make notes ;-)

Do you see your Oncologist still?  Although many do not advise HRT following breast disease it may be necessary to really consider if other products don't ease symptoms, it's about Quality of Life.

[Bj118]

Thank you, CLKD for your welcome and kind response.

Am on Tamoxifen 

Yes, am still seeing my oncologist and my surgeon. Recently, finally, I spoken to them about all the physical side effects ..... and I couldn't understand why I was becoming such an emotional wreck. Both of the drs gave me the same answer..... the chemotherapy and Tamoxifen has suppressed my hormones and that's why this is happening to me and they definitely said NO to HRT. It is such a struggle for me 

Thank you very much for pointing me to the treatment area. Am still learning the handles to navigate through this forum.

Were you given an alternative to Tamoxifen?

[CLKD]

Nope.  I hadn't felt ill throughout my treatment so I didn't think that I needed any chemicals that were going to make me feel worse.  Also, I was told that it was for 5 years "in case there are any cells left after surgery" - in case, I was happy to risk it rather than feel so ill.  Once I stopped taking it I stopped feeling sick, dizzy, began eating again ........

I thought that Tamoxifen was to suppress oestrogen so you would have had symptoms - have they become worse recently?

I often wonder why, if there is *such* a risk with HRT regarding breast disease, why consultants don't offer mastectomy anyway.  It would be a huge step for most women but I have never met any lady who has been offered it, rather than being given a blank 'no'.  After all, quality of Life is important and I don't think that Consultants realise how debilitating menopause can be.  It can also go on for years ......... which are lost for ever.

I would be asking them what evidence they have that ladies with my type of breast disease, having taken HRT, get cancer? ;-)

Let us know how you get on.

[Hurdity]

Hi Bj118

 

So sorry to hear about your breast cancer - and I presume this is quite recent? When you say 10 years I presume you mean you have to take medication for 10 years rather than that you had cancer 10 years ago?

Firstly regarding your "lady's garden" area - if you are suffering from vaginal atrophy and dryness there as a result of menopause then usually with agreement from your doc it should be possible to have local oestrogen treatment as very little is absorbed into the system. Please do pursue this option if you can - the treatments listed are here:
https://www.menopausematters.co.uk/local.php.

As you are unable to take systemic HRT due to your breast cancer, (although possibly you may be able to some time down the line - depending on your age now?) there are prescribed alternatives, which although they do not replace oestrogen, do eliminate flushes and sweats in many women.

There is a scientific paper about this and you might like to look at the suggestions (it's not technical): http://journals.sagepub.com/doi/full/10.1177/2053369117711646?hootPostID=6690d93930a10b86869c48433ab506e7 (Consensus statement for non-hormonal-based treatments for menopausal symptoms) recently published by the Journal of the British Menopause Society.

It reviews the SSRI drugs (anti-depressants) available and even though you may not be depressed these are the best non-HRT drugs for flushes and sweats for those taking Tamoxifen:

"Venlafaxine is the preferred treatment for breast cancer survivors taking tamoxifen, and at 75 mg, there is significant reduction in hot flushes with concomitant improvement in fatigue, mental health and sleep disturbance."

The paper also looks at behavioural therapies and stress reduction because of its favourable effect on mood and therefore perception of symptoms, and also other treatments for breast cancer survivors:

Most women diagnosed and treated for breast cancer will live with their cancer, rather than die from it. A common consensus is to avoid estrogen replacement therapy for breast cancer survivors. More research is needed into the safety of possibly using estrogen-based therapies particularly in receptor negative patients but for the moment most clinical guidelines will consider estrogen treatment contraindicated. Even BrCA gene carriers who become menopausal following risk-reducing surgery will be guided to take estrogen replacement only up to the age of 50. There are a variety of position statements, guidelines and consensuses for management of vasomotor symptoms in breast cancer survivors from International and National Societies on the value and safety of alternatives. A meta-analysis of adverse effects in non-hormonal drugs in breast cancer survivors shows a much higher level of adverse effects with 81% of SAEs in one treatment group compared with those on placebo, low dose therapies and acupuncture. The NAMS Consensus Statement September 2015 looks for solid evidence of a few therapies that work so as not to waste patients' time experimenting with things that really do not work. NAMS recommends SSRIs, SNRIs, gabapentin, pregablin, clonidine, CBT and clinical hypnosis. The UK guidelines, i.e. NICE CG 23 and NICE CG 80 indicate that SSRIs, SNRIs and gabapentin are no better than placebo and that paroxetine and fluoxetine may reduce the efficacy of tamoxifen. For breast cancer survivors, NICE CG 80 recommends clonidine, venlafaxine and gabapentin although the NICE 2015 indicates that only St John's Wort may improve symptoms, although not recommended because of serious drug interactions.

Isoflavones, red clover and Black Cohosh are not recommended for breast cancer survivors by any of the international bodies.

I hope this helps and you are able to find some relief and suitable treatment soon.

Hurdity x

[Bj118]

Hello CLKD, thank you for your kind reply.

NOw they prescribed Tamoxifen for 10years. Really have no idea why dr refuse to prescribe HRT.

Yes, my side effects are getting progressively worse ..... especially, my anxiety......at first, I thought that it was due to the chemotherapy but still around after the treatment!! Am so so silly that I never even realised that I was experiencing menopausal side effects..... I don't have anyone, mother, aunt or grandmother who would share this with me so I was in the dark all the time!!! Until finally, I talked to my dr.

Yes, you are absolutely correct....... menopause is so very debilitating !!

Are you also experiencing menopausal symptoms??

[Bj118]

Hello Hurdity,

Thank you for your welcome and comprehensive advise.....plus giving me some pointers and links.... really appreciate it!!!

Yes, I meant that I had to take Tamoxifen for 10 years.  I am 49 years old, female and married with no kids..... only have fur babies ..... 5 doggies 

The strange thing is that, I have told my dr about the frequent hot flushes and if there's any medications and he just told me that it is part of the side effects and do not prescribe me any medications...... so I have been living with it.

I feel like I am living in 2 climates...... close covers, opens covers, close covers, open covers..... never ending. Have to bring a little fan whenever I go....

Vaginal dryness was driving me up the walls..... so itchy that I keep scratching till blisters 

My low moods.... no moods.... moods swings, anxieties are so unlike me but making me nutty

Weight gain, tiredness, can't handle work as before..... the list seem to go on

Sorry for rambling on.

Many thanks once again for your kind reply and advise.

 Bj

[CLKD]

When you say 'Dr' which do you mean, your GP or those Consultants?

Browse round. Make notes.  We have a thread on 'dog breeds' too ....... 

Have a chat with your Practice Nurse maybe?  Take a list of symptoms which should be treated separately from your chemo etc.!  Also, has the Oncologist told you of the risks with Tamoxifen  .

Some ladies find that a private visit to Prof Studd is useful, it may be worthwhile keeping him in mind.  If necessary you could ring his secretary to see if he advises ladies with your medical history - if you don't ask, you don't get ;-)

[Bj118]

Hello CLKD,

Yes, when I mentioned dr. .....it is not the gp...... it's my surgeon and oncologist 

I have been browsing around..... there's so much info and so much to read..... getting dizzy 

Ooohhhhh...... that's interesting.... thread on dog breeds.....where can I find this?

No, my oncologist has never discuss on the side effects with me. Yes, you are right, I should make a list and ask on my next appointment.

Sorry CLKD.....sounding really daft..... but who is Prof Studd???

[Bj118]

Hello,

Have 2 questions and hope someone can help me

1. What is Calm App?

2. Who is Prof Studd?

Thanks xxx

[peri]

Hi Bj118 Professor John Stuff is a consultant gynaecologist who specializes in menopause and hormone replacement therapy.  Google him and check his website out.  Lots of ladies on here have been helped by him when they couldn't get joy from the nhs. I also follow his regime but I haven't had to go see him, I learnt everything I know from this website and then got it from my (very obliging) GP x

[Bj118]

Hello peri,

Nice to meet you.....Thank you for filling me in on Prof Studd..... have just checked out his website!! 

Are you also facing menopausal issues?

Bj xxx

[peri]

Hi there, yes but I'm settled on my hrt regime so things are much better for me now.  I'm interested in hrt and it's  implications for breast cancer as a close friend of mine has had it + mastectomy and treatment, and struggles with menopause symptoms x

[Bj118]

Hiya peri,

Thank you for your reply.

Your friend seem to be similar to my situation. I was diagnosed with breast cancer, had mastectomy and treatment and am struggling big time with menopausal symptoms......both physical and psychological symptoms

My dr absolutely will not prescribe HRT to me. To be honest, I am at my wits end .... am trying so very hard to handle all the symptoms.... more so the psychological aspects as I have developed anxiety, being weepy, am an emotional wreck

Since I found this forum..... at least, I found out more info to understand better.

Have a lovely weekend.

Bj xxx

[peri]

Hi my friend chose not to go down the hrt route, and instead takes a drug which helps with mood, flushes and bones (not tamoxifen).  She says it really helps, I'll find out what it is and pm you x