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Letrozole & Thereafter ?

daisies4ann
Offline
Hi, I hope for kind sharing / advise on the situation I am in please. I have listed down alot of questions that comes to my mind (thinking from out of the box) and I sincerely apologise for the length of them. I would just like to ensure I am well prepared and informed before I speak with my medical team / breast nurse.
  1. I will be having a telephone discussion with my breast clinic in another week or so to discuss about my letrozole intake. In my meeting with a doctor last year (as there was a concern with some changes to my breast and weight, thank God I am well), I was told to continue taking letrozole as it is good for me. The information of me to continue taking letrozole wasn’t stated in the visit summary letter that was posted to myself and also my GP after the visit. My GP recently found a letter (probably dated last year, I can’t remember) that says I was supposed to stop taking letrozole. In my discussion with my GP, she referred me back to the breast clinic for further discussion.
  2. I have taken the following courses of medications (amongst some other treatments etc) :
  • Appx 2 years of Tamoxifen.
  • My ovaries were then removed.
  • Approximately 9 years of Letrozole.
  • The cancer I had was triple + breast cancer.
  • Some treatments I have had : Chemotheraphy, Radiotheraphy, Zalodex, Tamoxifen (after that, Letrozole). I have also removed my ovaries.
  1. I am trying to find information if there are researches for taking Letrozole for more than 10 years. Any guidance on this would be very much appreciated.
  2. After much consideration, I would like to continue taking letrozole. I read in another forum that this is something considerable. Please advice thoughts on this please, thank you. 
  3. What other options do I have should my medical team disagrees to my intent of continuing with my preference in taking letrozole ? Do I have a choice to make decisions on this ?
  4. Are there any natural supplements that mimics letrozole ? Or supplements that help lessen the production of estrogen in one’s body ?
  5. What is the protocol / steps and what to expect when letrozole is taken off one’s medical list ?
  6. If you are in my situation, what would you do should your medical team decides to take Letrozole off you and you would like to continue taking it ? What other options that can be done on this regard ?
  7. If you are in my situation, what supplement would you take to protect / look after yourself should your medical team decides to take Letrozole off you and you have no choice but to submit to the decision ?
  8. Any information at all, or sharing of experiences be it relevant to the above or not are very much appreciated.
My very sincere apologise for the so many questions. I am feeling concerned, stressed and worried. For me, Letrozole is a safety net to me. I personally think the decision would be a life changing one and I would like to ensure I make the right decision moving forward.
Looking forward to kind reply. Thank you. 

  • Hello and thank you for your post

    A few years ago, research was presented at a large cancer conference called ASCO (American Society of Clinical Oncology), which was looking at extending letrozole from 5 years to 10 years. However, in the study, some women had already been on other hormonal therapy before having the letrozole and benefited from 15 years of treatment.

    At the time, it was not known how much survival benefit, if any, this brings, as longer follow-up is needed.

    The concerns are the risk of side effects such as thinning of the bones, osteoporosis. So this is a discussion women should have with their doctors to weigh up the benefits of taken hormone treatment for longer than 10 years against side effects.

    We cannot recommend any supplements or whether or not you should stay on letrozole this is something only the medical team who know your situation can discuss with you. If you disagree with what they are recommending, you can ask for a second opinion.

    Many women worry about coming off their hormone therapy, but research does indicate that there is evidence that it continues to reduce the risk of the cancer returning for many years after you stop taking it. There is some information about this on Breast Cancer Now's information about letrozole. This is something the medical team can discuss with you.

    Once you stop taking letrozole, and you are discharged from the hospital, there are no further protocols, the GP is in charge of your healthcare. if you have any symptoms that cause you concern, it is always best to be safe and get them checked by your GP, who can refer you to the hospital if necessary.

    You may find it helpful to repost on the 'living with cancer' thread, where more people may see your post. It may also be worth posting on the Breast Cancer Now forum, which is specifically for people with breast cancer.

    I hope this helps in some way. Do get back to us if you would like to speak with one of the nurses on the helpline we are available Monday to Friday 9 am-5pm freephone 0808 800 4040.

    Jemma

  • Offline in reply to CRUK Nurse Jemma
    Dear Jemma,
    Thank you also for your kind advise of reposting my post in 'living with cancer' thread. I will do so accordingly, thank you. I have also posted on Breast Cancer Now forum and have received several responses. They are very helpful. 
    Please may I also enquire further information please, as follows : 
    1) Are you aware of / able to advise about clinical trials that are currently taking place or will be taking place that are related to the extension of Letrozole / AI intake ? Also other trials that I may be able to consider (even if they are not Letrozole / AI related) ? I am in my late 40s, I had Her2+ and Triple+ breast cancer on my right breast. 
    2) I am currently taking Turmeric and Ashwagandha as supplements. Would you provide your thoughts on the supplements please.
    3) If you have a relative / friend who has breast cancer or who had breast cancer in the past, what would your advise be for them :
    a. In personal care
    b. And also when they see their specialists / oncology team; what are requests that can be made that are most often overlooked or not known about ? 
    Looking forward to hearing more from you. And thank you ever so much again for your kind reply. 
     
    Thank you. 
  • in reply to daisies4ann

    Hello, and thank you for your further questions.

    I can't find any open trials we are aware of that are looking at extended hormone therapy. Cancer Research UK primarily finds trials, but we are not directly involved in the daily running of trials or recruiting patients onto trials. This is done by the doctors and nurses in the hospital.

    We have permission to list trials on our website, where you can find open breast cancer trials that we are aware of. However, there may be other trials that are taking place that we do not know about. There is another website, ClinicalTrials.gov, that gives information about trials across the world, including the UK, which may be helpful. If you do come across a trial that you are interested in, the best person to discuss this with would be your GP/ specialist, as it has to be a doctor who refers you to the doctor in charge of the trial.

    Our information about supplements is general, as this is not our area of expertise, and we would always recommend checking with a doctor who knows your situation.

    I wasn't quite sure what you were asking about, advice about personal care, or what requests that are overlooked can be made to an oncologist/specialist.

    We have information about living with breast cancer which may be helpful and there is also lots of information about living with breast cancer on the Breast Cancer Now website. Everyone is individual in what they want to know or how they manage their cancer, so it is difficult to know what advice to give. However, if you would like to talk things through with the nurses on the helpline please feel free to give us a call.

    Take care,

    Jemma

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