Hi All
I am on letrozole and zoladex and have been since last November. I had a mastectomy last August after finding out I had breast cancer last June.
The side effects of the hormone medication have been terrible, my stomach is very boated, my joints hurt, i get heart burn, tired all the time, the list goes on. Anyway i mentioned my weight gain to my GP a few weeks ago. she organised an ultrasound scan. I updated the breast care nurses what was going on as i want to change my medication due to the side effect of the medication. I was told to call her back after I have had an ultrasound scan. The lady who did the ultrasound scan said it is probably focal fat sparing.
I phoned my breast care nurse back to get an appointment with the oncologist to change my medication. The telephone consultation should have been today at 11am. I got a call from the breast care nurse at 10.30am to say that they have found a lesion in my liver on the right lobe. Now last year i was told i had two lesions which were nothing to worry about. Told the breast care nurse this and she said, the letter didnt state what lobe it was on.
So now i have to go through the process again and have another MRI scan. I am terrified again. I am back to how i felt last year, petrified. Has anyone had the same thing happen to them? please can you share with me as i feel utterly low now
Hi Sunflower
I never know if replying on here actually helps, but I thought I’d give you the benefit of my experience and hope it helps.
I was diagnosed straight to secondary in 2013. It has been a real rollercoaster ride. I didn’t have surgery until this year (!) because they didn’t think it was worth it as it had spread to bones and liver. Here are some of the things I would pass on.
You’ll have to get used to the medical parlance. Lesion, in my experience, tends not to be as major as tumour.
They will probably be unsympathetic to the side-effects. I have had verbal battles with various medics - from Professors to Junior Doctors about how miserable side effects like aching joints and tiredness can make a life. They tend to think they’re a small price to pay for dealing with cancer. What they will do, probably, is offer you more pills to help you deal with the side effects. I have a drawer full of anti-sickness; anti-dizzy; anti-bloating; Codeine, morphine etc. etc. I don’t take any of them. Morphine makes me sick and constipated, the Buscopan gives me wind, the laxative made me feel like I was in a scene from Bridesmaids. I could go on…
The trouble is - the hormone treatments, like Letrozole, are very efficient in dealing with mets. Letrozole stopped working for me three years ago so I’m on its big sister, Fulvestrant. Good news is - you do get used to the horrid side-effects. I never thought I would ever say that. I used to weep in 2015 but now they’re the least of my problems.
I know it’s easy to say, but try not to be terrified. You’ll get used to it. Just take each day as it comes - develop coping strategies and manage your expectations.
It’s very early in your journey so understandably you’re shocked and frightened. You will have to keep seeing doctors and having procedures. I had a CT Scan yesterday. I reckon I’ve had close to 100 now but I was on a drug trial for two years so had more than usual. I also refused treatment for two years because it all got on top of me. Then I found a really good counsellor who taught me mindfulness - which is basically living in the moment and not panicking. But that will be for later for you …
Chin up. Use this forum for support and advice. Phone the Breast Cancer Now nurses if you’re very down - they helped me a lot.
Also I’ve found having an annoying, very demanding family helps me take my mind off my problems. If you haven’t got one, you can have mine!
All my best
P x