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

I had breast cancer removed Aug 2013.  Started on Letrozole April 2014 for a year but because of aches & pains I got moved onto Anastrozole.  At first I thought it was better, but been on it now for over 2 years & I'm crippled with joint pain, shoulders, hips, knees, particularly left leg, foot deformed, bakers cyst behind left knee.  I'd asked consultant if I could stop it.  He said no & offered Tamoxifen, I said no.  2 weeks ago I went to GP who offered me a break for a month to see if there was improvement.  So I've stopped taking it.  I value quality of life.  My bakers cyst has reduced & hot flushes have stopped!  I've been cold.  Haven't been cold in over 3 years. In 2 years by bone density has gone from above average to osteopenia of the spine.  I know someone who has been on it for 6 years without any side effects.  It must affect people who are prone to arthritis.  My cancer was the most oestrogen positive you could get, but a risk I'm prepared to take rather than suffering.  Also had the insomnia & itching, take antihystamines to control it & constipation.  But prone to the latter two anyway.

Always remember it is your choice to make. Do some research to back you up, there’s lots on here so that you know more about it the next time you see the doctor. Think carefully about what you want, and the possible risks. Everyone is different. For me the side effects are just too much to bear currently, I’m seeing a shoulder specialist tomorrow because of problems there, and I’ve done my part with physiotherapy , over 6 months, injections and exercise and still I can’t fasten my bra, or sleep at night from the pain.  I need to feel some kind of “normal” for a while. Maybe this will only be a break and I will be given something else later, but it will be my choice.

Best wishes and good luck.

Hi,Ali,

it’s now 10 months since I stopped Letrozole and the joint pains in my legs and muscle pains have all but disappeared. I tried Tamoxifen for a short while but that was the same so stopped. It does take a long time for the side effects to disappear. 

Re your shoulders, get some physio if you can before it stiffens. I had that too and was told it’s common after radiotherapy, unfortunately mine developed and I had to have a shoulder replacement due to arthritis. Sometimes you think these pains are never going to end but one day you realise how much better you are and you haven’t noticed, I hope this helps. 

Hi Ali,

I have had 2 bouts of breast cancer. The first time I had a lumpectomy followed by Tamoxifen for 1 year. For the second bout, I had a double mastectomy, followed by Letrozole for 6 years. I did not have any radiotherapy or chemotherapy.

I had side-effects with both Tamoxifen and Letrozole. I stopped taking the Letrozole in July 2017, but am still having pain in both arms, legs and back.

Kind regards,

Jolamine xx

Hi Judy,

Make sure to have a chat with your oncologist or breast care nurse first, before you stop taking the Letrozole.

I hope that your joints settle down, along with all of the other side effects.

Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

I’ve got an appointment with my oncologist tomorrow. But I’ve stopped taking them 3 days ago and already I feel so much better. The aches have reduced tremendously, itching not as bad , last night I slept right through. My quality of day to day has improved so much in days.