Hi @terk welcome to the forum and thank you for telling us your story. Endocrine therapy is such an individual experience and we each have to decide on what is most important to us if side effects are in evidence, there’s no right or wrong. I also think for many of us, as we age, quality rather quantity of life becomes more important so, as long as we are completely clear in what the risks are, and there has been a discussion with the oncology team first, giving up the AIs is a legitimate choice. I wish you good health and a cancer-free life in the future.
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Hi. I have done my four weeks without Letrozole and I don’t feel much different. So I saw my GP and she is sending me off for an ECG and a referral to a cardiologist. The ECG will be Wednesday and I don’t know when I’ll be seeing the cardiologist for a heart scan. The breast cancer nurse has told me it’s ok for me to wait another two weeks before taking the letrozole. I also need to have a blood test because my diastolic is high on the blood pressure monitor so been prescribed higher blood pressure tablets. This is to make sure my kidney function is ok. I’m not scared anymore which is strange for me, in fact I’m more concerned about the fact that my tooth filling fell out this morning and so I have a dental appointment tomorrow. This is an update on my previous posts by the way. Oh yes…the GP has also asked for a referral for me to see a breast cancer consultant to discuss my medication with regards to risks etc. I’m hoping to take a holiday in September as I’ve had to cancel one already and didn’t bother to book another because I’m superstitious. I don’t want anyone to think the letrozole gave me all these symptoms, they would have happened anyway because of my family genes. I do hope I can go back on the Letrozole because it makes me feel safer and I’ve been lucky with regards to side effects. Painful joints and stiffness that go away after a good walk is about all I had. If you see this Tigress, I hope you are ok. I never forgot how helpful you were when I posted for the first time. I’m still doing my walks and exercise but blimey, this year is going so fast. I’m trying my best to make it go slower by standing in a post office queue, sitting in a dentist chair, watching a pan of water boil, waiting for my husband to find a perfect parking place, oh and striking up conversations with people I know are really boring. I have a new network now which has enabled me to post. Take care all and best wishes. Next time I post I hope it’s good news but today is now and that’s how I live. In the “now”.
Hi @lori06 how nice of you to remember. I have my 3rd of 5 annual mammograms a week today so a touch of scanxiety is beginning to kick but other that, I’m fine thank you. I have had a couple of 6 week Letrozole breaks, you will be fine. The best of luck with your cardiology investigations, Everything crossed.
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Thanks for replying. I’m still trying to work out how to use the forum. Waiting for tests and results is something I forgot to add on to my list of how to make time go slower. Seriously, I’m keeping my fingers crossed for you too and anyone else here who’s waiting. I get the jitters sometimes and I’m lucky to have my dog. She’s so in tune with how I feel and her sweet and funny nature is a tonic and she gives me a reason to get out of bed in the morning (even though she stays on it). I’ll keep checking in. Take care.
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Hi there, so many tricky decisions during our breast cancer treatments and this is one of them for sure. For what its worth I ended up totally pro Tamoxifen and similar drugs after my experience- and I began being v questioning about them, particularly wondering about benefit vs side-effect impact.
I had my first BC 15 years ago. MX, Chemo, rads and then Tamox. I hated it for first 6 months but then I was okay and ended up taking it for 10 years. Got my second BC, a new primary after 15 years- so basically I have a body that is super keen to grow oestrogen driven BC and Tamox protected me. That protection has meant everything to me. Those 15 years have been amazing. I am now starting Letrozole with a clear understanding of the many many downsides, but also, if it works to keep cancer away, I will try really hard to deal with the side effects in a proactive and positive way.
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It’s reassuring to read about the positive effects of hormone treatment keeping cancer at bay. But it also reaffirms my thoughts on the fact it delays recurrence rather than kills the cancer cells.
Ive read a few studies that discuss how cancer cells can lay dormant for years, and it annoys and scares me that hormone treatment is initially a max of 10 years. Recurrance for ER is well documented to happen a lot later, and this appears to coincide with hormone treatments finishing. I don’t mean to sound unappreciative of medicines and research, it’s a response to my own thoughts and reading your post @margie_toon , it seems your new diagnosis fits this “scenario”.
I’m really sorry you’re having to go through this again and I hope you have equally good or longer success with your next round of treatment. Stay strong x
Just to clarify, I didnt have a recurrence I had a new primary. The treatment I had for first BC removed all the cancer cells of that cancer. Tamox stopped a new growth until 5 yesrs after I stopped it as directed by protocols ( 10 yearsbeing the max,) Then my oesteogen encouraged a new primary. Dr Liz O’Riordan’s brilliant video on Tamox explains the process really well, and its quite entertianing.
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All the best margie-toon.
My sister in law had a new primary breast cancer 22 years after the first was clear. She now has letrozole following surgery and chemotherapy and feels fairly ok on it- and reassured!
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