Letrozole

Hi I have had surgery and been given letrozole to start before radiotherapy in a few months time. The consultant said for me to start the medication when I was ready to. I have heard a few horror stories about the medication does anyone have any suggestions when I should start taking it, as I seemed to not think to ask when I was at my appointment. 

  • Hi Mitch 24,

    A very warm welcome to our forum.

    There are some horror stories about Letrozole, but some people sail through treatment. Unfortunately, I wasn't one of them, but it has worked so far. I have had 2 bouts of breast cancer. The first was 15 years ago and then again the following year. Would I take it again? - yes certainly. Cancer feeds on Oestrogen and Letrozole helps to lower the levels of Oestrogen in the body, which slows the growth of certain cancers. Many of us are nervous about taking this, in case of side-effects, but if you don't try it, you'll never know how you'll react. I am not a doctor and I suspect that this is why your surgeon has left it to you to decide when you're ready to start, but, the sooner you start it, the sooner you start fighting this disease.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hi Mitch24 hope you are healing well , I was started on tomixmfimmi (can not spell soz) then changed to letrozole which I have been taken for nearly a year really its much better only a couple of hot flush now and then .. .after getting  used to it which was about 3 weeks . 

  • I started taking Letrozole immediately after seeing the oncologist three and a half weeks ago. I start 20 sessions of radiotherapy next Monday. You can take the tablet at any time of day but I have mine at lunchtime with food. I have found that it minimises the effect on my digestive system. At first I had indigestion and bad stomach ache but these symptoms are beginning to lessen now. As Jolamine says it lowers the risk of cancer returning so I think it is worth starting straight away and disregarding some initial discomfort. I understand that side effects could disappear in time so I am prepared to be patient and keep on taking it. 

  • I would start taking it now. If you have any adverse reaction you can stop taking it I didn’t have any reaction and I’ve been on it for over 3 years. 

  • I have been taking Letrozole for nearly 5 years but started on Anastrazole. Had some joint pain with Anastrazole so was changed to Letrozole which wasn’t quite as bad. Was hoping to stop taking it this year after 5 years was up but was diagnosed with breast cancer again this year in the other breast. Just had mastectomy and will now have to keep on taking it! 

  • Hi Mary,

    Welcome back to our forum, although I'm really sorry to hear why you've returned. Is this still a primary cancer of the same type? I hope that you are recovering well following your mastectomy. I took Tamoxifen for the first year after my lumpectomy, then discovered another cancer in the same breast. 

    At that stage my consultant changed me to Letrozole, as he said that the Tamoxifen hadn't worked for me. I can fully understand how gutted you feel having taken Letrozole for almost 5 years. Has your consultant suggested changing your treatment, when you have developed a second cancer, despite having taken Letrozole for so long?

    Please keep in touch and let us know how you get on. As you know, we are always here for you.

    Kind regards,

    Jolamine xx

  • Hi Jolamine thanks for your reply. Last time it was DCIS, had lumpectomy and radiotherapy for the right breast which was picked up on a routine mammogram 5 years ago. This time I felt a lump in the left breast, very obvious. It is a lobular type quite large cancer. Mastectomy was done and 5 lymph nodes taken nearly 4 weeks ago. Have had more pain from the lymph node area than the mastectomy site.

    Have appointment this afternoon to see my brilliant Consultant for results of Oncotype DX testing to see if chemotherapy will be needed. I’m pretty sure he said I would continue to take Letrozole in the future. Will ask this afternoon.

    Will definitely let you know how things go and what the plan is going forward.

    All best wishes.

    Mary xx

  • Hi Mary,

    I am now nearly 15 years down the line. I had a double mastectomy second time around and, like you, had more pain from the site where the lymph nodes were removed. I hope that the appointment with your consultant went well this afternoon and that there is no need for chemo. Did you get the chance to ask about continuing to take Letrozole?

    You should soon know the plan for moving forward and, I'm sure that you'll feel better to know how your future is planned out.

    Kind regards,

    Jolamine xx

  • Hi Jolamine saw the registrar this afternoon. Everything is healing well and lymph nodes all clear. Unfortunately the results of the Oncotype DX not yet back. If no chemo needed will have to take Exemastane which I don’t know much about xx

  • Hi Mary.

    I am glad to hear that your lymph nodes are clear. I'm sure that you were disappointed that your Oncotype results weren't back yet. Have they said how much longer they expect it to take, before these results come back?

    As far as I know Exemestane also goes under the brand name of Aromasin  and is an Aromatase inhibitor. Side-effects are pretty similar to those of hormone tablets. Here's hoping that you won't need chemo.

    Jolamine xx