Oncologist won’t see me

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1

Hi,

I had my diagnosis in 2022 so still within my 5 year access to the breast care team. I phoned them recently asking if I could talk to my oncologist about letrozole and its side effects which have got worse recently and to discuss the possibility of vaginal oestrogen. I was told I could not have an appointment and was told to contact my GP which I have done. Firstly, I don’t think it’s very good that I can’t discuss my medication with an oncologist , when all the advice says to do so if you are struggling. Secondly, I don’t know if the GP can prescribe vaginal oestrogen without an oncologists agreement. I am really struggling with fatigue, UTI, low mood, anxiety and joint pain and I have been effectively turned away from the breast care team who are supposed to help. What is your advice please?

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I would actually speak to your GP - explain how miserable you are how the medicine is making you feel etc. If they need to speak to your Oncologist before prescribing anything then they will do that and you will have your answer though probably not very quickly . They may also refer you to a Urology or Gynaecology specialist or Menopause clinic who might consider prescribing vaginal oestrogen for you.

You might get a quicker answer from your Breast Care Nurse - you should still have access to a BCN . Obviously they won’t be able to prescribe but they will know how open your particular Oncologist is to prescribing vaginal oestrogen . It may be that they can offer other treatments / afvice that they will want you to try first .

I’m so sorry you are feeling this way . I can recommend D Mannose and lemon barley for UTI Hyalofemme and Dr. Wolf V- San cream for the dryness and the V-San intimate wash as well to use in the meantime. Forgive me if you have tried these already and I’m sorry that you have to negotiate this - it’s such a difficult issue and it causes so much misery.xx

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Thank you so much for your kind words and advice! I did speak to the BCN who told me the oncologist wouldn’t see me. And then she just gave me the stock standard info of not being able to have oestrogen etc. No discussion or info on my particular circumstances, hence why I wanted to speak to onco to have a proper balanced discusssion.

Have used ALL the non hormonal options. YES works quite well. I already see a UTI specialist. They can’t prescribe oestrogen for me. It’s the last thing on my list that I’ve not tried. I really appreciate your reply, thank you xx

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I went to my GP pre radiotherapy about various menopausal symptoms including vaginal dryness. She offered me vaginal oestrogen without me asking. I think she said amount absorbed was the equivalent o single HRT pill a year but it may have been a month so tiny dose whatever. I decided to wait until after radiotherapy mopped up any stray cancer cells but shall be going back for it.

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I phoned my BCN and told her in no uncertain terms that I was stopping Letrozole after three years and to put that on my record. That triggered some form of red alert and I had an appointment sent to me for a telephone consultation with the head honcho oncologist within a week. We had a good discussion and she agreed I could stop taking it. Maybe a more direct approach, whether you intend stopping or not, would get you the appointment which, IMO, you are entitled to?

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Ha, thanks! Yes, if I have no success with GP that’s what I’m going to do!

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My GP prescribed vaginal oestrogen 2 years ago (when I was 3 years post diagnosis) without discussing with an oncologist. She has had breast cancer herself and was/is well read on current research etc so I was very fortunate. As others have said, she said the dose is very low and localised so extremely unlikely to get into bloodstream. I was given it for my terrible ongoing UTI like symptoms resulting from vaginal atrophy caused by the Letrozole. It completely sorted that out for me and I now only use it every 4 days to keep things at bay. Hopefully your GP will be able to help.

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I was first diagnosed with breast cancer in 2019, when I had DCIS in my right breast. In 2024 I had cancer in my left breast, leading to a mastectomy and lymph node removal. I have taken vaginal oestrogen through all of this, with the blessing of my oncologist. I absolutely couldn’t manage without it. There seems to be widespread ignorance amongst GP’s, oncologists and breast nurses, that vaginal oestrogen is safe for women who have had breast cancer to use - and it will help them to stick with Letrozole for longer.

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Sorry you are having problems. Try seeing if there is a GP in the practice that specialises in this. I have oestrogen positive breast cancer and use vaginal oestrogen which I discussed with my oncologist . I find the cream works better than the pessaries . I couldn’t manage without it . Maggies the charity also have some really good online workshops which may be worth looking into. As one of the previous ladies said - the dose is equivalent to 1 HRT tablet a year and the gain in QOL is worth much more .

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Hi @Jedigirl,

Thanks for posting on our forum.

We hope to be able to respond to you soon.

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Charlotte

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11

I would try the GP and you may have to keep complaining . Everyone is being cautious and you obviously have one of those teams like mine that don’t want to consider vaginal oestrogen and they’re hoping you will just go away so that they don’t have to make the decision whether to give it to you or not . There are doctors who are open to prescribing vaginal oestrogen to women with a history of breast cancer - I know of at least one Gynaecologist who does this . You could also find the name of your Oncologist’s secretary and send an email or letter explaining that you are feeling totally miserable and have tried the non hormonal preparations without success . Say that it is making you consider giving up your oestrogen blockers ( even if it’s not ) . And that you have already tried to approach them via your BCN and that they could not offer any further advice .

Another thought - I decided to start taking a collagen supplement for my joints and to protect my eyes after having posterior vitreal detachment in both eyes in 2024 following retinal vein occlusion in one eye in 2019 . Collagen can help to support and improve the texture and resilience of pretty much every tissue in the body . I’m currently taking ELAVATE (- one of the claims on the advert is that it can improve vaginal atrophy ) DOSE was also effective . I was given the go ahead by my team to try it so it’s something else that if you haven’t tried might be worth considering even if you want to run it past your team first . I’ve found it has made a positive difference to my joints my nails my hair and I’ve had no further deterioration in my vision . My intimate area I think may be benefitting a little . One of my problems is that I like to swim a lot which is generally very good for you but neither sea water nor chlorinated pool water are particularly good for the intimate area Xx

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Were you prescribed cream? I’ve just been prescribed a ring you have to insert and keep in which is not very appealing!

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I’ve not been yet as that GP is on holiday and I want to go back to her.

If the ring isn’t working for you go back and say so.

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Hi @Jedigirl,

Thanks for your post.

Vaginal dryness, together with other menopausal symptoms like genitourinary symptoms, joint pains and aches, fatigue are common in women who have had or are having treatment for breast cancer.

This is because some breast cancer treatments like letrozole block or reduce the amount of the hormone oestrogen in the body. Oestrogen helps maintain the vagina and vulva’s moisture and elasticity. A lack of it can cause the vagina and the surrounding tissues to become dry and less supple, causing pain, soreness and discomfort. This can make sex or intimacy difficult.

Vaginal dryness and irritation can be distressing and difficult to talk about. But, if not treated it can get worse, so it’s important to get help from your GP or treatment team.

It sounds like you have had a difficult experience, as others have shared they have had too, when reaching out to your breast care team and being told you could not have an appointment. We would suggest contacting your treatment team again, you could try contacting the medical secretary to arrange an appointment with the oncologist and discuss management for the side effects you are experiencing.

Vaginal dryness and irritation can also be caused by infection so we would always suggest you make an appointment with your GP to rule this out first.

There are a variety of non-hormonal treatments that can help with vaginal dryness, including vaginal moisturisers and lubricants. Pelvic floor exercises can also help improve vaginal dryness by increasing blood flow to the area.

For some, vaginal moisturisers can help give relief from dryness and discomfort. They should be used regularly, every few days for best effect.

Vaginal lubricants tend to be shorter acting and are either water or oil based. You will need to avoid oil-based lubricants if you are using condoms, as they can cause the condom to break. Lubricants are often used to help prevent friction and pain during sex and intimacy.

Moisturisers and lubricants can be used together.

If you continue to have vaginal dryness and irritation and cannot find a product that suits you, do talk to your GP, breast care nurse or treatment team as they may be able to refer you to a specialist menopause clinic.

Some people also benefit from a referral to a physiotherapist specialising in pelvic problems. Do ask you treatment team about whether this would be appropriate for you.

The most commonly used treatment for vaginal dryness is HRT (hormone replacement therapy). HRT is not usually recommended for women after a diagnosis of breast cancer. However, some specialists will consider prescribing low does hormone treatments that are applied directly to the vagina (topical or vaginal oestrogen). These include oestrogen pessaries, creams or a ring.

As you’re taking letrozole, vaginal oestrogen may be used sparingly in combination with a non-hormonal moisturiser or lubricant. Do talk to your treatment team or a menopause specialist about the risks and benefits of this.

You mention that you are also struggling with fatigue, low mood, anxiety and joint pain. Although vaginal oestrogen may benefit your vaginal dryness and UTI it won’t have an impact on these other issues you are facing as its not absorbed into the blood stream. The charity Menopause and Cancer is a good resource for information on how to manage these symptoms. Many of these include looking at diet and exercise which is proven to help in many ways. The World Cancer Research Fund have lots of information regarding this.

Your GP or treatment team will usually prefer you to have tried non-hormonal treatments before considering topical hormone-based treatments.

Our booklet Your Body, Intimacy and Sex also has information about vaginal dryness.

Our upcoming webinar on Menopause and Cancer and Sex and Intimacy may be of interest.

We offer a range of free supportive services which you may be interested in. They include face to face and online courses and events.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

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Breast Care Nurse

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