Exemestane Breast Cancer

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Hello there, just looking for a bit of advice please. I was diagnosed with BC two and a half years ago. I had a lumpectomy and sentinel lymph node removal. After my treatment finished I was prescribed Letrozole, unfortunately I had to stop taking it as it gave me really bad bone pain. My oncologist then put me on Tamoxifen, I have been taken it for almost two years, but had problems on and off with it. Pelvic pain, two ultrasound scans and biopsy due to a thickened lining of the womb.

The pelvic pain became unbearable and 10 days ago I stopped taking it.

Today I had an appointment with my Oncologist and she has now prescribed Exemestane. I have read a leaflet on the side effects, and there are loads. I just do not think I can go through anymore horrible side effects. I have not started it yet as I am going on a 2 week holiday next Tuesday and do not want to feel unwell while I’m away.I am seriously considering stopping the hormone medication and was wondering if anyone on here has done the same.

Any advice would really be appreciated.

  • Hi Valleyside.  So sorry to read about your side effects with hormone therapy medication.   I was on Letrozole and this was stopped abruptly due to the onset of acute depression which may have been triggered by Letrozole.  I then with my oncologist permission stayed off hormone therapy medication  for 8 months but my oncologist made me restart it again switching to Exemestane.   My oncologist was worried about the risk of reoccurance and strongly adviced me to go back on hormone therapy medication.  I sort a second opinion from a relative who is an oncologist and he said absolutely you must not give up hormone therapy medication because it is protecting your life. If you did come off the hormone therapy meds and if there was reoccurance you may live with guilt.    The only thing I can suggest is if you speak with your oncologist and ask for a temporary break from hormone therapy for your body to recover.  

    By the way Exemestane has not  been as bad as Letrozole for me.   But my metabolism has been affected.  I get more hungry and increased weight gain.

    I wish you all the best and also remember if you have side effects it may well be the result of lack of estrogen causing this as opposed to the tablet itself. 

  • Hello Valleyside. This is purely my own experience and I wouldn’t assume to offer advice. Letrozole didn’t work for me. Instantly gave me a tremendous headache & visual problems so it was stopped after 1 week. I started Exemestane then. Things were not so bad for about 5 months but gradually I realised that the side effects were becoming bothersome. Brain fog, severe bone pain, feeling as though I wasn’t in control of my emotions but worst of all I felt I was bordering on depression. This was added to the hot flushes & risk of worsening my early osteoporosis. I discussed this with my breast surgeon and he advised a 2 month break then review. After 2 weeks, I felt an improvement. He also advised me to use the NHS predict tool ( version 3 because version 2 doesn’t factor in radiation treatment which I’ve had). I’m 71 and 14 months post surgery. The predict tool gave me an 84% survival rate over 10 years without hormone treatment and 85% with 5 years of hormone treatment. Many discussions later with my husband, family and my breast team, I decided not to restart Exemestane or any alternatives. I couldn’t bear the thought of feeling like I had done for the next 5 years to gain 1% survival time. My breast surgeon was totally supportive of my decision. Maybe you could use Predict , it may help you towards an informed decision, and the results may be quite different for you depending on your age, type of cancer and your treatment. I would think any Oncologist would strongly recommend you continue, after all, it’s their job to protect life , but they are not the ones who have to tolerate the side effects. My decision is unique to me and I’m of an age to make the most of what I’ve got- I’m generally fit & active, I enjoy my life and felt the side effects were impacting that too much. I don’t dwell on the “ what if I made the wrong decision “ and as yet don’t have any guilt feelings. Hope this helps

  • Thank you so much for your reply, I found what you said very reassuring. I am 64 and like you want quality of life and enjoy time with my family. I spoke to my GP yesterday and she said it would be perfectly ok for me to start the Exemestane after my holiday.

    I will use the NHS Predict tool and see what it comes up with. I still haven’t made a decision on whether to continue hormone treatment. It’s something I will discuss with my family soon.

    Wishing you all the best for the future xx

  • Thank you so much for your reply. I am still undecided whether to continue with the hormone treatment. It’s something I need to discuss with my family.

    Quality of life is important and the side effects from the hormone treatment is making that impossible for me.

    Wishing you all the best for the future xx