Forum Discussion
MazaDj
22 days agoMember
Nervous and scared before my surgery tomorrow
Hi all, so my surgery is tomorrow. Ever since I've been diagnosed I wanted surgery ASAP, and it's here. Horror feelings are back: fear, despair, anger, confusion, just a mess. I had surgeries bef...
MazaDj
20 days agoMember
Meurig thanks for your message.
Wow, you are doing amazing. Well done!!
I really appreciate your story, thanks for sharing your journey. How did you find endocrine therapy? Did you have a lot of side effects?
I've been reading a bit about it and side effects scare me so much.
I hope you don't mind if I ask questions along the way.
I wish you well and keep doing well ♥️🌻
Sign in to react to this post
Meurig
20 days agoMember
Hi Maza, I'm happy to answer any questions you ask. I am a retired ( very) Phys Ed teacher with an inquisitive mind, at 80 next year, I need to keep my brain and body active!!
When I was diagnosed ( on April Fool's Day) I was immediately put on Letrozole 2.5 mg, which I have to continue with for 5 years, or unless there is something changed. There was an immmdiate response to ths medication, pathology showed reduction of cancer cell growth.
I already had Fibromyalgia which has affected my physical quality of life. I was coping with over the counter meds when I needed relief.I also have 2 auto immune skin issues, long pre-existing. Over the past 5 months, since I started the Letrazole, my symptoms were worsened. I decided to be pro active and have kept regular appointments with my dermatologist, who specialises in gynaecological conditions. She monitors my Lichen Sclerosus and prescribes treatment ( I've been seeing her for nearly 40 years ).
With my Firomylgia, I did a fair bit of reading as it has finally been recognised by the wider community, doctors included. As it is still being investigated for cause and cure, many doctors are simply unaware as there are no real tests to prove its presence. I have been seeing a neurologist for at least 10 years for teatment for Trigeminal Neuralgia ( bloody hell, this sounds like Munchausens on speed). I read that Lyrica, which I hadbeen taking for the neuralgia, would be helpful in reducing the symptoms of Fibro, so I am taking it at night and getting around 8 hours most nghts.
Regarding the Endocrine meds ( Letrazole, Anastrozole or Tamoxifen) they are all effective in blocking oestrogen and slowing/stopping cancer growth. Each individual will be prescribed whatever their treating team decides, after discussion. Whether a person has side effects is very individual as is their tolerance of those side effects.
I was offered to change my meds, but I decided that as Letrozole had been chosen for me and there was evidence of its efficacy, I would continue. I never kow whether it is the hormone blockers or my Fibromyalgia causing the hot flushes and the "grumpy old woman syndrome". I will see at my 3 monthly appointment with my oncologist, whether there is any change in my blood tests to warrant a change in treatment.
For fear of this reply getting longer than necessary, I will cease as what I have said is "My Cancer Club" experience and not necessarily the same as anyone else. I am very happy to answer.
Along with the fantastic support and knowledge of the members of this site, I also read stuff from scientific papers which are relevant to me and my area of interest. Dr Liz O'Riordan is a UK cancer survivor, she was an oncologist and surgeon who has had to relinquish her practising through physical incapacity. She is creating pod casts and educational material regarding myths and misinformation surrounding breast cancer. There is also another American surgeon/oncologist woman that i occasionally watch, althouh I feel more comfortable with things that are Australian in origin.
I better shut up now, or I'll get banned.🤣
Sign in to react to this post