Letrozole medication & Radiotherapy - Breast Cancer

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I have been prescribed Letrozole, which I have not yet started due to concerns.  At my Oncology consultation I raised my concerns with brittle bone as I already have osteoporosis in my spine,  the reply to this was they would do 2 yearly bone density scans and if need be give me another pill to help protect my bones, ignoring the fact that I would rather not have brittle bones or take more pills.  I also have missed fractures in both my feet due to an accident and raised concern that I do not want to end up with mobility issues, as I already experience these at times.  I asked if there was another drug I could have that would not cause issues with my bones, to which I was ignored and did not get a reply.

I also said I was not happy to take the medication without a blood test to see what my oestrogen levels were as I was informed at a menopausal conference last year that my levels would be non-existent due to not having a period for 29 years years after having a Merina coil fitted, which was only removed 3/4 years ago.  He did complete a blood form, but then went to see a colleague and came back retracting the blood test and said I don't need a blood test as I am post menopause and just to take the medication.  Again ignoring the fact that due to the Merina coil I have had menopausal issues for the last 29 years.  

He also informed me at the appointment that with the treatment of radiotherapy and medication the % change of cancer returning would reduce to 15 - 25% without treatment the risk of cancer returning is 20 - 30%.

With radiotherapy there are a number of side effects, to add to this mine treatment is on the left side, breast cancer.  I was informed I need to hold my breath for 30 seconds each time they do the radiotherapy to protect my heart, I can only hold my breath tops 14 seconds, as the Oncologist time me, therefore I will end up with a heart problem as the waves will go through my heart, which he did not seem bothered with, only seemed to want me to have the treatment and nothing else seemed to matter.

Also rare with radiotherapy but can happen it can cause cancer in another part of the area being treated. Why give radiotherapy to protect cancer from coming back if it can cause cancer in another area, I'm puzzled. 

Can anyone offer advise as to what to do for the best, for taking the medication or not and having radiotherapy or not, at the moment my view with what have read and been informed and what they could not be bothered to do (blood test), is not to carry on with the treatment with only having a 5-10% reduction in change or the cancer not coming back, I don't feel this percentage is worth the side effects and risks.

I was told when this all started that my cancer was totally cureable, now feeling with or without treatment it's not.

  • I am on Letrozol but don’t have answers for any of your very good questions.  Sending good wishes and healing thoughts your way. X

    Liz

  • I can’t answer you with regard to the Letrazole but I can answer  the radiotherapy question as I used to be a radiotherapy radiographer.

    When you have your radiotherapy planning scan they will make an assessment as to the position of your heart and lungs. Some left sided breast patients don’t need to hold their breath as anatomically their heart is far enough away from the chest wall. The radiographers will coach you in the breathing techniques and asses the longest time you can hold your breath for. Once they have this timing they will pass on this information to the dosimetrists who are going to prepare your individual treatment plan. Your treatment will consist of beams coming in at different directions and if you can’t manage 30 seconds they will plan your treatment to have 2 x15 seconds.

    If you are unable to hold your breath at all then there are lead screens inside the machine which can be computer controlled and inserted into the beam to shield out the parts they don’t want to treat.

    If you haven’t had your planning appointment yet you can practice your breath hold by lying with your arms above your head and holding your breath. Start with 10 seconds and work up.

    There are certainly side effects with radiotherapy such as reddening of the skin but great research has been done over recent years to reduce doses and target the radiation more effectively so the benefits generally outweigh the risks. 

    A second malignancy caused by radiation is a rare occurrence and is usually a very late effect that occurs many years later such as if a child is treated and then gets another cancer 39 years later.

    if you are unhappy with the way your oncologist answered your questions then you are entitled to a second opinion. Every oncologist has an obligation to explain the risks and benefits as part of ‘ informed consent’.

    If it helps with your decision I had Radiotherapy myself in 2021 and as I had worked there I knew all the side effects. I wanted to do everything I could to stop the cancer returning.

    I hope this has helped you a little x

  • I am on Letrozole which I understand is designed to starve any cancer cells remaining of oestrogen - it is for post menopausal women as it stops the oestrogen which is produced in other organs/parts of the body and should only be used when the ovaries are no longer working.   I didn’t know that oestrogen can be made elsewhere in the body.  I don’t know if this explanation helps.  It’s very important to be menopausal which is why those of us who aren’t yet there but need this medication have injections to shut down our ovaries or Letrozole can stimulate active ovaries to produce more oestrogen to compensate for it not being produced elsewhere.  Which explains why it is also a fertility drug for younger women.   

    I hope you can make a decision you are happy with - I was worried about the radiotherapy as they did need to go under my breastbone to get the central lymph nodes but in the end it didn’t feel like such a big issue - the team were so careful and professional I felt in safe hands - I see the very knowledgable Xraygirl has already replied to you and hope that reassures you.  

  • Your information and explanation is always so good to read. Thank you for explaining everything so clearly. It must have been so strange for you having to be a patient too. Good luck with your journey and thank you for your posts.

  • Thank you Evajean. I’m glad I’m able to help in some way.

    Yes it was strange to be on the other side of the fence with treatment but I tried really hard to be a good patient and do as I was told for once!

    I hope you are keeping well now that you have finished RT. X

  • Yes thank you. I struggle being on Anestrozole but it is what it is and life is good. Have just booked a Easter break in a caravan with hubby, daughter and two grandsons while my son-in-law is away on business. Not our usual holiday but plenty of fun for our boys to enjoy. So nice to be doing normal things again. 

  • I don't know if this is a silly question but what about progesterone? Mine are positive to both. No one seems to mention progesterone? 

    Thinking

  • Thank you Liz for your kind words. x

  • Yes I’ve wondered about that…. Maybe someone who knows the answer will read this thread…

  • Thank you everyone for your replies and wishes.  Exraygirl thank you, the information you have given is very helpful and you have given me something else to think about with the radiotherapy.   Also LabradorLovers for info on medication. I am struggling with what to do for the best, I don't want the cancer returning, but already have health conditions and can't bear the fault of being worse off then I am all ready and the percentage of the reduction of having treatment only reduces the risk of it return by such a small amount, it's hard to know what to do for the best results and outcome.

    I wish everyone all the best, take care x