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[Pbjb]

Hi All

Is there anyone out there, like me, who can't take HRT?  I had breast cancer in 2020.  Had chemo and am now on Tamoxifen.  Because of the breast cancer, I can't take HRT (or lots of the specialists out there say I can't and some say I can, but I don't want to risk it)

Without realising it, I went into a crushing early menopause.  I believe it was mentioned by my oncologist, but I had NO idea what I was letting myself in for!!!  Here's a list of the symptoms: Heavy chest, tight neck and shoulders, physical feelings of overwhelming anxiety (I have nothing really to be massively anxious about), dry/burning mouth which is also in my eyes and stomach, exhaustion, lightheaded low mood, don't often want to be with anyone (my poor husband, who is AMAZING).  The most terrible thing is being like this in front of my children.  They are 19 and 16 and probably don't really notice (teenagers!!). And I try to hide it all from them.  But I feel SO VERY SAD about the fact that I can't be there for them the way I used to be. 

I'm nearly 50 and have been going through this for about 5 years.  I eat really well, drink loads of water, sleep quite well at night, do yoga, pilates and meditation and exercise whenever I can.  I do see improvements, but on bad days...god it feels dreadful!  At the moment, there's almost a perfect pattern of one day good, next day bad, next day good, next day bad!!!!  Why???  I seem to have not a lot of say in how my body feels.  Apart from having children, I am used to controlling my life quite well and this just sends me into a head spin!!!!     

Is anyone else not able to take HRT and if so what things have you found that help?  Thank you so much ladies for this forum.

[GraceM]

Firstly I would explain to your children exactly what you are going through and stop trying to hide it.  They are old enough to understand and I'm sure would rather know its menopause then some other illness. 

As regards your anxiety, have you spoken to your gp?  If not, why not?  Go to your gp and ask for help.   You may be prescribed anti-anxiety meds, you may be referred for counselling or it could be both.  Give it time to work and hopefully you will notice positive changes after a few weeks. 

[CLKD]

Quality of Life?  Many oncologists are now prepared to discuss HRT requirements, after all, it mayB years++ B4 any cancer is triggered.  If replacement is so dangerous then women should be advised to have bilateral mastectomy because most will need some form of HRT.

Don't dismiss treatment for vaginal atrophy, this is totally different to other forms and may be essential to keep symptoms under control.  I think it depends on how old we are when we consider if HRT will ease symptoms.

[bombsh3ll]

I would ask for a referral to your local menopause clinic.

Whilst hormone therapy is by far the most effective treatment for menopause, there are other options including certain antidepressants, pregabalin etc that can benefit some people.

As anxiety seems to be your main issue there may be more mileage for you than someone with predominantly physical symptoms.

They should be experienced in providing care to breast cancer survivors.

It is also worth getting an oncologist's opinion regarding the real world risk of recurrence, because there are some really good predictive models of this and risk is often much lower than people imagine - for example women are often prescribed 5 or 10 years of anti- estrogen treatment with horrendous side effects, which is only actually reducing their risk by one or two percent.

Also are there any alternative measures of protecting yourself that would enable you to consider the possibility of low dose hormone therapy, such as bilateral mastectomy?

[CLKD]

Tamoxifen almost killed me.  As a medication prescribed on an 'in case' basis I stopped it after 3 months.  Never again!

U might not need to take HRT for long and if it eases symptoms? 

[Pbjb]

CLKD, bombsh3ll and GraceM
Thank you very much for your advice and suggestions. I really appreciate the time you’ve taken to help me.
You’ve given me lots to think about.
Going to look up bilateral mastectomy now!

[CLKD]

That will depend on the relationship that you have with your breasts.  If it meant that I could take HRT should a battle ensue, then I would certainly consider the surgery.  I wouldn't have implants or reconstruction either, 1 lot of surgery would be enough.

MayB ask your health provider/s whether such a drastic measure is really necessary in order to take replacement - which U may not require for very long and which may well outC any risks.

Let us know! 

[bombsh3ll]

Just to add I have been happily breast free since age 29 because I had 7 affected relatives - mastectomy is a very low risk surgery in healthy women because it doesn't involve opening up any major body cavity such as the abdomen, chest or skull.

I was in hospital for 2 nights and would have been only in for one had I not been forced to have implants, which thankfully seldom happens now (unless you want them).

The best thing about it in my experience is the freedom to take hormones without any fear. For example it has enabled me to do 20 years of continuous COCP to halve my risk of ovarian, and when I graduate from that I will be straight onto MHT. I also never need to have a mammogram.

Whilst I never had cancer, the risk is probably not much greater for someone remote from successfully treated early stage cancer.

[Meg]

I have a good friend who has had breast cancer and was prescribed venlafaxine because she could not take HRT.  This was prescribed by her oncologist.  She has been on it for several years and will probably continue on it as it has helped her with her menopausal symptoms a lot.  As you probably know it is an antidepressant.  Everything is a personal choice, not everyone can take HRT for various reasons.  Maybe you could look at the limited other avenues.  I empathise with you.  I think my friend is taking a time release capsule.

[MummyClanger]

I’m not in the same boat as you but just wanted to say definitely tell your children what it’s going on as they are definitely old enough to understand what is going on and as others have said they may jump to conclusions that you’re unwell. I’m so sorry you’re going through all this it’s horrible I had awful anxiety and depression before HRT and didn’t realise that it was peri menopause. I hope you get something to help x

[joziel]

Have a read of the book called 'Estrogen Matters' by Dr Bluming (available on Amazon). It summarises all the existing research into BC and HRT and will hopefully put your mind at rest.

Be assured that women on estrogen only had a LOWER risk of BC than women on no HRT or on combined, even in the WHI. And that estrogen was once a treatment for BC....

[Pbjb]

Wow! That’s all so helpful and interesting. Thank you.
I often think about having my other breast removed. But haven’t gone further than the thinking stage 
I’m also so entrenched with trying to find another way of battling the symptoms, rather than HRT, that I probably haven’t faced up to the fact that I should be discussing this all in more depth, again, with my consultant. It’s just been so hard to get anyone properly in the know to answer my questions about HRT, etc. They all seem to have different ideas/read different research, etc. 
My children are well aware that it’s the menopause that’s causing my exhaustion, anxiety and other symptoms, and I have to tell them quite regularly  I just hate the fact that I’ve changed so much from that fit, bubbly, supportive Mum who could take on most things. It’s not the kids fault and I hate that my menopause effects others!! I do realize that they probably don’t notice most of the time as they’re off doing their own things.
Thank you again, you’re helping to clear a little way through all my brain fog! Ps. I’ll have a look at the book Estrogen Matters. I definitely need to be more informed.

[bombsh3ll]

You definitely have options and deserve the best possible quality of life achievable.

Personally I think the practice of leaving breast cancer survivors with one breast is beyond cruel unless that is the patient's own preference.

[Pbjb]

Ikr!
My way of coping with one breast: I’m an Amazon from ancient history. I’ve had one breast removed because I’m a warrior and am as hard as nails 
Thank you for sharing that you had both breasts removed. That was a brave, strong decision to make. Respect! And you are inspiring. Thank you.