@naughty_boob thank you for all of this. I was told to stop vaginal oestrogen. I wasn’t on systematic HRT. I restarted it after a few weeks as I couldn’t cope with sitting on pins as well as chemo 
I think I’ll contact the GP to discuss that low oestrogen option.
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If the GP is no help, go to your breast team or oncologist and if not ask for a referral menopausal specialist. A list can be found here The British Menopause Society. https://thebms.org.uk/
We shouldn’t have to live with these terrible side effects. The main thing the menopause specialist said it’s a balance between quality of life and recurrence. It’s bad enough with the anxiety that goes with a diagnosis and risk of it coming back.
Let us know how you get on 
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Loads of information, thanks for putting it on the forum.
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I met with a new consultant last week due to a change in my health trust and moving.
She suggested oxybutynin to me for the hot flushes and said she would advise my gp of this so waiting to hear from them,
Can you tell me have you tried this and does it help at all, absolutely sweating loads at the moment.
Thank you in advance
Xx
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No I didn’t try it. It was an option the specialist offered but as I’d paid privately it was the only chance to try Fezolinetant, unless I paid again as a GP can’t prescribe yet. Oxybutynin can cause tachycardia so I was wary even though my medication was not listed an an interaction on the BNF website. BNF is only available in the UK | NICE
I hadn’t heard of oxybutynin before and all the others listed British Menopause Society as non hormonal medication for hot flushes interacted with my heart medication.
You are absolutely amazing…you are a godsend for me!!! You post really hit home…
Omg I can’t believe it!!! I really need to know how did you manage to get Veozah on private prescription? My oncologist who I am seeing privately refused point blank to do this for me…his excuse was that there wasn’t a clinical trial done on breast cancer ladies and he doesn’t feel it’s safe even though is a non-hormonal drug…how long have you been taking Veozah and how are you feeling?
I’ve been begging him for so long that I gave up at the end. I am taking antidepressants - was on Paroxetine and more recently changed to Venlafaxine. I also tried oxybutinin with no luck as I had such a dry mouth whilst on it so decided to stop it as didn’t make much difference with the hot flushes too…
I am struggling with so many side effects that I am seriously thinking about going on HRT or stopping Letrozole…
My legs are killing me especially my knees…I’ve been having these awful pains and nothing helps. I’ve been trying acupuncture but it barely makes a difference…
I really would like to have the contact of the consultant who prescribed Veozah to you as I can’t wait until next year please please…I am desperate. I am willing to travel if need be to see them.
Can you message me privately? Or I can give you my email address.
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I’ve sent you a private message.
I have been taking Fezolinetant/Veoza for 6 weeks, I was advised that within 1 month I would know if it worked. I was advised that one patient noticed within 6 days. I found a difference of severity within 4 days and as time has gone on the amount had also reduced. I generally feel warmer than I did before my diagnosis but the hot flushes are a slight warming sensation rather than a surge of heat that I found really hard to disappear. I could be woken up by a hot flush and take 30 minutes to cool down then I was wide awake. My sleep is improving with Fezolinetant and vaginal oestrogen( reducing night time urgency)
I believe the studies suggest 50% reduction
Forgot to add I had already used Yes vaginal moisturiser and lubricant but it wasn’t enough. They are both available on prescription and were recommended at Maggie’s menopausal course as the nearest to our own bodies. I found another lubricant on www.jodivine.com called Sutil which is also very good.
I have been taking letrozole for 2.5 years and recently started getting really bad hot flushes and modd swings half the time up and then screaming like a fish wife at my husband. I sailed through the menopause at age 54 and had no problems at all. Now I think this was because I was awash with oestrogen so that kept me free of one thing while stimulating the breast cancer.
Why I wasn’t born a man I don’t know. So many benefits have been denied me. Sisterhood may be fine but a penis is the greatest way to wealth and power as far as I am concerned and such an easy way of knowing when you orgasm too.
Life just isn’t fair. Should I stop letrozole? I have stabbing pains in my knees, legs and ankles too. Isn’t it time to stop before I go mad? I have a horrible itchy red rash from bellow my breasts to my diep abdominal scar. It was really dry skin which I scratched so now it is much itchier and brick red, driving me mad. Aveeno cream is helping but not much.
Any ideas?
Seagulls
If it was me, I would do my predict score (see my first post for link) and then speak to your team and also asking for a menopausal referral.
It so horrible to have these side effects and it appears the oncologist know they exist but as they have probably not experienced them they generally think you can cope. It’s quality of life as well as risk of recurrence.
There is a lot of information on the www.menopausendcancer.org website/podcast.
Hope you can get some relief soon
Very sorry to hear about your problems like legs and knees. You know, it may help you to have a discussion with an expert ‘someone’ outside of your actual BCN/Hospital network. I talked with Jacky, a nurse expert at Future Dreams House, and she gave me new perspective, a lot of new information and reassurance. And I’ve found, btw, that moving said legs and knees as often as possible - and doing very basic exercises on them (you can find physio advice on You Tube) - has been really really good.
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i have discovered the rash is a bacterial skin infection called folliculitis and i need totake antibiotics for it for three weeks. I am glad I know now what I have but am still very itchy. i put calamine lotion on again this morning after scratching away when I shouldn’t have. So the moral is - put scratch proof gloves on if you cannot resist the urge
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Thank you for all this information. I had a terrible menopause which was eventually well managed privately then via the nhs with HRT. I had to go cold turkey too once I received my diagnosis and my symptoms are back with a vengeance and this is before commencing my letrozole. I’m really dreading the side effects of this drug as am already not coping well with the symptoms I have.
I really appreciate you sharing your story and some helpful information which gives me some hope.
I’m glad you’ve been able to address some of the symptoms you’ve too been struggling with and wish you a good quality of living.
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I thought it was time to do a quick update on my progress.
I’m now 7 weeks on from starting vaginal oestrogen and I can say it’s made a huge difference. No longer sore, itchy or in pain. I can wear what I like and sit without discomfort.
I followed the advice to use everyday for 3 weeks and then twice weekly. I still use moisturiser 3 times a week and lubricant when needed. I’m now past the time that it may pass over into the blood stream (6 weeks) so that’s reassuring.
The Fezolinetant/Veoza has also stopped nearly all of my hot flushes, I’m definitely warmer than before and when I do get a hot flush it just a slight increase in temperature and pass quite quickly. My sleep is improving but I do notice my aches and pains can wake me or I get cramp. I find moving nd stretching helps more with the aches and pains. If I sit too long and get up I look like an 80 year old woman hobbling for a few steps until it eases.
I also just had a clear annual mammogram.
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@naughty_boob thank you for the update, it’s good to hear when things are actually helping. Your progress is champion, if you’ll excuse the pun, well done on your first year result too. Love and big hug xxxx
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Thank you @nannabee I think it’s so important to follow up some threads. I’ve read a few and I think people get ‘better’ and move on and probably forget to update and I’m always wondering how they got on.
thank you for your report on what could be available if i went outside the NHS
for political reasons I could not do this but i can see why you have done a runner towards a more sympathetic sector.
Seagulls
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@Seagulls as well as the BC I’ve just had skin cancer and the treatment left me with an awful large itchy dry flakey area in the centre of my back. My husband has been applying Cetraben Overnight Ointment twice a day and the area is now as he says “as smooth as a baby’s bum”. Not that he’d know how that felt as he never changed any nappies and my boys are now 51 and 48 so a long time ago. I don’t know if it’s been the right thing to use etc but I wasn’t getting anywhere with the creams/salves suggested by dermatologist and ended up deciding to sort it myself (I’m a typical stroppy and impatient old lady). Hope it helps xx
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Another update.
Hot flushes are mainly few and far between, much less severe and pass quickly. I sleep better. Vaginal oestrogen has allowed me to sit on a bike again! Feels more healthy and moisturised.
I have looked at the NICE website regarding the Fezolinetant and it looks like they aren’t meeting until March 2025 and publishing May 2025. That’s several month’s longer than I was advised (January 2025) so I will be reviewing the cost and whether to continue. As it’s not just the prescription, but a follow up consultant fee, prescription handling fee and postage, it adds up. I’m speaking to the menopause consultant soon so will talk this through before ordering more. There is an option on the NHS for Oxybutynin.
Here’s a study published in 2020 with good results.
i have been getting worsening pains in my knees ankles and legs and am finding them so horrible I am thinking of stopping letrozole. I have also been getting hot flushes which I did not get at all diring the menopause. It’s all making myquality of life worse although being an active gardener helps as I find gettomg totally absorbed in physical activity distracts me from thinking about other thins which miraculously reduces the pain to nothing. So worth a try to reduce dependence on pain killers. it annoys me that I have to payfor boxes and boxes of paracetamol and ibuprofen as the GP isn’t prescribing them.
I am thinking of putting in a request. I reallydo rattle and boil rather than rattle and roll.
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