Hi Lise,

I have also had two bouts of primary breast cancer in the same breast. I was first diagnosed 7 years ago and had a lumpectomy followed by Tamoxifen. Almost a year to the day, I found a second cancer in the same breast. I had a double mastectomy (1 was just prophylactic), followed by Letrozole.

I have taken Letrozole for 6 years and only finished taking it a few months ago. Like you, I have had all sorts of side-effects. I have Lymphoedema in both arms now. I have nausea, night sweats, severe  eye sight problems, weight gain, arthritis pain in all my joints, Diabetes, small fibre neuropathy in both legs, insomnia, intense fatigue, liver fibrosis, kidney problems, lack of concentration, memory loss, chronic constipation,  fitting (due to medication), itchiness, tooth decay, dry mouth and a host of other symptoms. I had some of these problems with Tamoxifen too, particularly with the sweating. One of my nurses suggested taking a low dose of Venlafaxine for this. This is a prescribed anti-depressive, but it has reduced the sweating considerably. It might be worth asking your care team about this, if you continue to have problems. Acupuncture can also help.

Can I ask when you were first diagnosed, what type of breast cancer you have, what stage it is at,  how soon after your first bout did you fall prey to the second one, is there any history of breast cancer in the family, and what age you are? I am 68 and my Mum had breast cancer for 12 years. It metastasised to liver, lungs, brain and breast in her final year..

Are you scheduled to stay on Letrozole for 10 years or are you due to finish after 5? I was told that although the recommendation is now for 10 years, that, for my type of cancer, it would do no good continuing to take it after 6 years.

Have you discussed some of these side-effects with your care team? They can give advice on how to combat some of these side-effects.

I hope that you can get some relief from these and that you don’t find any more  lumps in your breasts.

Please keep in touch and let me know how you get on.

We are always here for you, whenever you feel like talking.

Kind regards,

Jolamine xx

Strange i get pain in the opposite side to the cancer ie my right shoulder really hurts if i reach out for anything so bone pain is an issue with Letrozole . I had left side breast cancer treatment yet my right shoulder hurts on Letrozole and many other things like nausea and diarrhea every morning . Told oncologist but she seems disinterested . told GP they seeking other tests ie have i got infections etc.. i know its Letrozole ..havent felt right on it for 6 months now so stopped it

Hi Recovery,

Have you tried different manufacturers of Letrozole? Some people find that this helps. Sometimes you really have to insist that your care team do something, as side-effects are so common that they sometimes tend to ignore them.

Kind regards,

Jolamine xx

I had bone and joint pains too with Letrozole, especially shoulders. I now take exemestine, also known as aromasin, and I am much better. 

There are many alternatives to Letrozole so take it up with your consultant or breast care nurse. Go armed, do your research on here, show that your complaints are legitimate.good luck.

I had bone and joint pains too with Letrozole, especially shoulders. I now take exemestine, also known as aromasin, and I am much better. 

There are many alternatives to Letrozole so take it up with your consultant or breast care nurse. Go armed, do your research on here, show that your complaints are legitimate.good luck.

Hi Snowdrops,

I had a lot of bone and joint pains throughout my body too.

I agree that there are a number of alternatives to Letrozole and, would certainly advise anyone to explore these options before stopping hormone therapy altogether.

Kind regards,

Jolamine xx