Hello, so I’ve been on Letrozole for 17 months. Have been living with all the usual side effects, weight gain, bad sleeping patterns and most affecting and common I know, awful stiffness and pain in joints to the extent that after I wake up and walk downstairs, my feet are so sore I can hardly get down the stairs. My lower back is permanently aching and sore, but as we all do, you just live with it. However now there’s a new problem. About two months ago I started having a problem peeing in that I need to go, but have to really concentrate to actually have a pee and a lot of the time, I don’t get rid of everything in my bladder. I finally went to see a urologist this week and had a kidney and bladder scan, as well as doing a flow test. My kidneys and bladder are fine apparently, however I’m not emptying my bladder fully and this is because my urethra is affected by the total loss of oestrogen making it not as flexible as it was and not letting urine flow as usual. Which is a very common problem apparently. My urologist said that hopefully it will stay as is, but if it gets worse, my bladder will retain too much residual pee and that can lead to an infection, cystitis, swelling of the kidneys and result in having to be catheterised. Going forward I’ve been told that I would have to learn to self catheterise which has really sent me into a total decline. I’m aware that I clearly have water retention, my face is a bit puffy and my tummy is permanently a bit bloated. I already take Cranberry d-Mannose every day. Does anyone have any tips as to how I can help my poor urethra? Thank you in advance.
Plumcat, I am so sorry to hear this. I am 76 and was encouraged to start Letrozole after I reluctantly decided not to go ahead with chemotherapy due to my caring commitments and fear that I might not always be well enough to look after my husband during chemo treatment.
I have overactive bladder and Follicular Cystitis already and I am concerned that Letrozole might make my bladder symptoms even worse. I am waiting to see GP and will ask for a urological opinion since I am feeling very uncomfortable in the pelvic area.
I know it might seem counter intuitive but please drink plenty of tepid water and keep up the d-Mannose. I was also advised to take vitamin C, together with d-Mannose powder to keep the bladder environment acidic I think they said. They might be able to offer some pelvic floor exercises for you to try to strengthen your muscles. I would perhaps ask your breast cancer team for a referral.
Alternatively you could perhaps ask about an alternative medication to Letrozole or even a break from it, to see whether your symptoms improve. Quality of life is important too and you need to feel comfortable.
I do wish you relief from your symptoms soon xx
PS: I know all about self catheterisation since I have to do this every other day for my husband with stricture disease. Like everything, once you learn how and you have the right tools, it is not as bad as you might imagine and it does bring relief
Hi @Plumcat
I’m really sorry that you’re struggling with this - it sounds quite worrying and must be very difficult for you.
The advice given by @angelina is sound . In addition
I’m wondering if you would benefit from vaginal / topical oestrogen which should I think get close enough to the urethral tissues to benefit them. Some Oncologist / Gynaecologists are now prescribing this for women with vaginal atrophy even with a history of ER + breast cancer who are taking an AI because it’s becoming accepted that it doesn’t absorb into your body system as a whole - the effects are just in the surrounding tissues. Not all Drs. are accepting of that yet so your team may or may not be open to the idea. Women who are taking Tamoxifen are more likely to be allowed to have it .
I occasionally suffer with a bit of cystitis and also vaginal irritation and if it raises its head I also take DMannose . In addition I occasionally use the Bio Active menopause pessaries or Hyalofemne ( the active ingredient in both is Hyaluronic acid which helps to plump up the tissues temporarily) and if I use it I sometimes find an improvement in my cystitis symptoms as well as my vaginal irritation. Forgive me if you’ve tried this already and it’s possible that your symptoms have progressed beyond what these products could do but they’re available online the pessaries I get in Boots so no prescription needed and in your shoes I would be willing to give them a shot while you are waiting for your team to decide what else they can do to help you. Xx
Hi Plumcat
Thank you for your post.
It’s understandable being told that you might have to learn to self-catheterise has sent you into a total decline. We hear from many women who, like you, are struggling with the menopausal symptoms that breast cancer treatments like letrozole can cause.
As you say, weight gain, difficulty sleeping, and joint pain are very common side effects of aromatase inhibitor (AI) drugs like letrozole and are linked to a fall in oestrogen levels. Joint pain may affect the hands, arms, knees, pelvic and hip bones, or, like you’ve said is happening in your case, the feet and back. You might find the information in the previous links on how these side effects might be managed a useful read.
It’s good to read that you’ve been able to see a urologist about the difficulties you’re experiencing passing urine. As they’ve explained bladder/urogenital problems are also very common due to the lack of oestrogen when you’re on hormone therapy. Oestrogen helps maintain the health and thickness of the urethra’s lining. With a lack of oestrogen the urethra lining can become thinner and less flexible/elastic, making it more susceptible to irritation and infection.
As the other helpful forum users have said it’s always important to talk to your treatment team about the symptoms you’re experiencing on letrozole including having a bloated tummy and puffy face which you believe to be related to water retention. Also tell them about any other herbal remedies/drugs that you’re taking like the Cranberry and d-Mannose. This will help them to support you and suggest ways these symptoms might be better managed.
As @angelina says, your treatment team may ask you to stop taking letrozole for a short period of time to see if your symptoms improve or suggest changing to a different aromatase inhibitor drug to see if that suits you better. If there is no improvement you may be recommended another hormone therapy, tamoxifen, if this is suitable, which may help to improve your side effects.
The most commonly used treatment for genitourinary symptoms is HRT (hormone replacement therapy). HRT is not usually recommended for women after a diagnosis of breast cancer. However, some specialists will consider prescribing hormone treatments that are applied directly to the vagina (topical or vaginal oestrogen). If you’re taking tamoxifen, your treatment team may be able to prescribe vaginal oestrogen. If you’re taking an aromatase inhibitor (such as letrozole), vaginal oestrogen is not usually recommended. However, as @ JoanneN says, you can talk to your treatment team about whether they think this might be suitable for your individual situation and about the risks and benefits of this. They may also be able to refer you to a specialist menopause clinic.
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