Vaginal atrophy caused by Letrozole

Hi everyone,

It seems that I have begun the VA process, 13 years after the menopause, brought on by Letrozole.

Thanks to searching the forum for mention of VA, I have started using vaginal moisturizers, in particular Yes and Vagivital.  They only give limited relief.  Having researched it on menopause forums, I only want to use Ovestin cream not Vagifem. 

I am well aware that most oncologists won’t sanction the use of estrogen pessaries and creams if your cancer was endocrine based (mine was e=8/8, p=6/8, HER -) but that some feel that the amount of estrogen contained in the VA treatments is not material.  Whilst I haven’t had the opportunity to speak to mine (or the non-existent BC nurses in my HA), when I have asked questions in the past, she just shuts me down and tells me to trust the process so can’t see her as the type to agree.  I would have thought there is still a net benefit in taking an AI even if using Ovestin.

So my question is: has anyone been able to persuade their oncologist to allow them to use any estrogen-based VA treatments?  If so, what arguments persuaded the oncologist?

From my perspective, this is such a massive hit to the quality of life that all the arguments about Letrozole saving your life just makes me think “what life?”.

I’m aware that you can order these things from online pharmacies like Superdrug but you have to tick a box to say whether you’ve had BC and I feel to lie about it would go badly if they check (they also ask you to allow them to check your NHS summary record - I’m assuming if you don’t, they won’t action the prescription). It all seems so underhand and suspicious doing it that way.

Any suggestions gratefully received. 

Hello @Tigress  

I’m sorry to hear that you are not having much success in persuading your team that your issue needs to be addressed 

I don’t know if my suggestion will work for you, but it might be worth a try. 
I’m a lawyer specialising in one particular area of the law (as is my husband) and when I was diagnosed and went through treatment I found it helped to draw parallels between the legal and medical professions in terms of understanding how each person within the profession fits in: ie the oncologists and surgeons have very different skill sets to the nurses and GP’s so my job is the equivalent of a consultant I know an awful lot about buying/selling/leasing commercial property however if you ask me what to do about how to sue someone for a debt owed to you I wouldn’t be able to help but I would be able to refer you to someone who does. Both in the legal and medical professions you will encounter people who work within their specialised areas some who will be open minded and willing to move out of their area and develop and understanding of different areas and specialities (this was brought home to me by my breast surgeon actually saying to me “I don’t know the answer to your question you will need to ask the oncologist”) 

So drawing on this analogy GP’s are like what are termed High Street Solicitors or advisors in CAB units they have a far broader knowledge base across lots of different areas but when asked about something which a requires a more specialist advice you then get your referral. 
Sorry if this seems a bit long winded, but my point is you might get a better response from a sympathetic GP or nurse practitioner who are more used to helping ladies with menopause symptoms and to the extent that they have read the headline “Do not prescribe any form of HRT to any lady who has had breast cancer” present them with the research you have done? 
If you’ve come across Dr Liz O’Riordan and/or Dr Annice Mukherjee they are both highly regarded breast cancer and hormone specialists (both of whom have had breast cancer themselves) who both regularly advise that vaginal HRT does not cause an increase in BC recurrence they would both also advocate that for ladies whose quality of life is so badly affected by symptoms which can only be treated using HRT then so long as the patient is aware of the risks then it can be prescribed. 
Finally if you don’t get anywhere persuading a professional medical to endorse your decision to want to try a hormone based lubricant and you feel you are sufficiently satisfied by your research versus your quality of life then by all means if you can source it elsewhere then I’d do it. 

Hopefully there will also be some ladies on the forum who can give you some real life experience of getting this prescribed  

AM xxx

I went through menopause at the age of 40 with no problems. I had ER breast cancer and lumpectomy in 2018 so have been talking letrozol for nearly 4 1/2 years. Everything was fine until 12 months ago. I had several UTIs and haven’t let my husband anywhere near me. I’m using Yes moisturiser every other day, sometimes every day if I feel the need(I have individual doses on prescription) but the thought of intimacy scares me. My consultant surgeon has said he will let me have vaginal oestrogen only if I change over to Tamoxifen. I was hoping to come off the letrozol Sep this year but now so unsure what to do. If I come off letrozol will things get better naturally. If I change to tamoxifen will I get even more side effects. Its a minefield out there, meanwhile my marriage is falling apart

I’m so glad to have found this thread! I have primary bc for the second time. First dx was in 2005 when I wax 45 and treatment then was Zoladex and tamoxifen.  This time it’s letrozole. My ( ipsilateral) tumour was Er+ 8/8 PR 6/8 and a nasty Grade 3. I didn’t have chemo because Onco DX score was 12. I really don’t understand how high grade cancers can have low Onco scores but that’s a different matter!

I have tolerated letrozole well on the whole except for painful sex and UTIs. Hurrah, eh? Before my dx in January last year I was using vaginal oestrogen and it was keeping things quite comfortable ’ below’. Now research has shown there are more recurrences in women using vaginal oestrogen who are also taking AIs. Tam is different in that it blocks the oestrogen receptors rather than reduces total oestrogen but it’s not as effective at preventing recurrence.

So, what to do? I’ve never seen an oncologist ( this time), only one of the surgical team annually. V different from 2005… The surgeon’s oppo told me in December (predictably) that no, I couldn’t have oestrogen cream. I’ve used Replens and that started a brown discharge which was investigated vis hysteroscopy.  I think it should be a known s/e of Replens. There’s plenty on line about it. Anyway since negative findings with the hysteroscopy I’ve restarted Replens. It’s better than nothing, I suppose. I’ve also bought some hyaluronic pessaries and mean to try some lactobacillus ones too ( Canesten) as they might help, especially re UTIs. 

Meanwhile I’m not exactly an eager partner in bedroom activity  but I was interested to read of Seagulls experience with perseverance!

At the moment I’m thinking that I might, after 2 years if no recurrence,  ask to go on tamoxifen for one year so that I can use some oestrogen. All in all it’s not very nice, is it? However,  Zoladex premenopausally was worse. Its just that after that my own oestrogen came back for a while as compensation. Ñ