Deciding whether to take Letrozole

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Hi. I was diagnosed with high grade DCIS in April,  had a therapeutic mammoplasty in June and currently on 5 days radiotherapy. Op went very well, tho they did find a small, 2mm grade 1 cancer in the bits which had been removed.

I've been given the option of taking Letrozole but feel the risks might outweigh the benefits. Any thoughts on this would be welcome.

For context, I'm 65 and take tablets for high cholesterol and blood pressure. Also waiting results of bone scan as Letrozole can affect bone density. 

Has anyone had any positive or negative experiences of Letrozole.

Best wishes to everyone 

  • Hello Sandy,  Glad that you have finished your surgery and soon your radiation treatments will be done too.  It is nice to tick off the boxes.  
    My situation was a bit different but will share how I made my decision to take Anastrazole which is one of the aromatase inhibitors.  At 71 I was diagnosed with low and medium grade DCIS in right breast and then in MRI saw something on left breast and I had surgery and it was a 3 mm invasive ductal cancer with 6mm DCIS. Had lumpectomy on right one too.  Had bilateral radiotherapy and then it was recommended I take Anastrazole.  My ER and PR was 100% positive in both breasts.  My bone density was good and I did not have any chronic issues so I decided to try the Anastrazole.  Had some side effects mostly joint discomfort, some fatigue, hot flashes, dry vagina etc.  Did that for 3 1/2 years then side effects became too much so Medical oncologist put me on letrozole.  Well after 6 months of being on it I couldn’t stand my IBS symptoms anymore so went back on Anastrazole.  Been a wild ride but I have about 9 months to go on it and my IBS  has lessened some.  
    i think if you decide to take it will be important to have blood pressure and cholesterol monitored.  You could give the medication a trial run and see how you do and talk to your Dr if having issues.  
    You can use the Predict tool to see if you are getting benefit from taking an aromatase inhibitor.  
    Here is the link.  https://www.google.com/url?q=https://breast.predict.cam/tool&sa=U&sqi=2&ved=2ahUKEwjrsrLajLWWAxXr48kDHRJUJKUQFnoECCAQAQ&usg=AOvVaw3kTEmnB8QVnZVHj8Mn3QwV

    Barbara

    Barbara 

  • Hi Sandy . Like you I’m in two minds about Letrozole . I was diagnosed with left breast stage 2 ductal carcinoma after a routine mammogram in March . I had a lumpectomy and lymph node biopsy in May , and I was lucky to be told that there was no spread . I have just finished 5 days of radiotherapy which apart from a very hot breast I am managing well . I am 78 and like you take a blood pressure tablet and statin daily . 2 years ago I had problems with my heart beating too fast which is now under control . I have decided not to take Letrozole as at my age I think I would prefer to keep feeling as well as I do at the moment and I really don’t want to risk any of the associated symptoms that a lot of people are experiencing on Letrozole . I think if I was much younger with young children it would be a different story . 
    whatever your decision I wish you well . 

  • Hi Hat and hopeful Barb (Sorry, haven't worked out how to tag people yet).

    Thank you so much for your replies. Absolutely agree I'd prefer keeping well without any long term associated symptons. 

    Had an interim review of the radiotherapy last week and the lady I saw went on Predict and there was about a 1% chance of Letrozole benefitting me. I don't feel its worth the risks taking everything into account, but will have a think.

    Thank you so much for your helpful replies. Would be lovely to keep in touch.

    Best wishes to you both xx

  • Hi Sandy . I’m sure you’ll make the right decision for you . For me quality  of life at this stage of my life is paramount . Let me know how you get on x

  • Hi

    I took Anastrozole for 18 months and the joint and muscle pains, hot flushes, etc got too much. I took a break and now im on Exemestane.  Its been three months and all the pains have come back, including carpel tunnel, itchy skin  hair growth on my arms and headaches. The side effects seem worse than Anastrozole.  Im seriously thinking of not taking any blockers. 

  • Hello I’m so sorry that you are going through this . It does seem that a lot of women are suffering very extreme symptoms on these tablets . As I said earlier only you can make the decision not to take them but for me the quality of life is important . I wish you well with your decision x

  • Thank you everyone for your helpful replies. It does seem like the risks and side affects of Letrozole far outweigh any benefits so I'll give it a miss. It might be a different decision if I was younger but for now I'd prefer to carry on enjoying good health.

    Best wishes xx

  • Hello,  raining here in sunny Florida.  Need it so no complaints about it as been in a heat dome.  
    The decision to take an aromatase inhibitor is a difficult one.  You are doing your due diligence and weighing everything which matters as your health issues could be made worse from the medication.  
    I opted to take an AI after much deliberation as one of my issues was fear of recurrence.  I don’t think the Predict tool measures that as it focuses on survival.  
    I have my mammogram and bone density tomorrow so busy day.  
    Take care and stay well.  Dancers‍♀️

    Barbara 

  • Hi Barb, no rain here in sunny Wiltshire, we need it tho.  I've definitely been doing my due diligence, the more info the better for me!

    My op was so trouble free, I felt completely fine both mentally and physically, and haven't even had any ill effects from the radiotherapy yet (guessing that might change). So I'm less worried about recurrence than long term side affects of Letrozole.

    Best wishes with your bone density and mammogram tomorrow.

    Stay safe and keep well.

    Best wishes xx

  • So glad that all is going smoothly.  I did really well too and was not too worried about my lumpectomies other than being lopsided but came out fine.  I am small breasted 34A so not much to work with so good thing caught on mammogram.  
    I really was worried about side effects from radiation as I am fair skinned and sensitive skin.  Had 16 treatments to each breast and a boost of 5 extra to right side as margin was a bit too close but negative.  Did rather than another operation.  Decided the boost was a good option for me.  I did well with very light redness but nothing to complain about.  Did have some itching but hydrocortisone did the trick.  I did breast massage for a year to each breast and think that helped to keep my breasts feeling fine.  If you want to know how it is done I have a video.  My radiologist told me to do it but his explanation was almost comical so found an excellent video from a radiation facility and it helped.  There are masssgd therapists who specialize in it too so you may have that option in your country. We have to pay for so many of the things that the Government deems not necessary.  Boo hoo!!
    Keep up the good work and positive attitude.  

    Keep in touch.  

    Barbara