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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...
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I understand your fears and concerns. I was looking beyond the initial lumpectomy, but started hormone blockers immediately. My pathology of first surgery, unfortunately did not have clear margins, but definate evidence that the 5 weeks of Letrazole had been effective in really slowing cancer.
Due to considerable spread of cells and tiny tumours, revisionary surgery still hadn't " got the lot", so 5 weeks after that I had left mastectomy. At no point was I truly in pain, more handicapped and inconvenienced by movement restrictions. I did not need chemo or radiation at that point, just the endocrine treatment ( which did jolly up my fibromyalgia). There is research that shows this path is as successful, so radiation and chemo are not necessary.
Life has almost returned to normal, gardening, chucking out bales of hay and carting horse feed bags and I feel somewhat liberated, if occasionally exhausted and in pain from fibromyalgia.
Yesterday I had a prosthesis and bra fitting with the beautiful ladies at Breast Care Melbourne. My concerns about my " bombsite" were discussed and I was told to " allow to settle" longer. The prosthesis is comfortable and is so similar to my remaining boob, with shape, weight and feel very reassuring, despite my generous aged body. ( 80 next year). I hope to be back riding soon.🤔🤞
There are always " what ifs" and concerns about recurrence, but keeping educated through this site and real scientific research, help me feel comforted. I live rurally, so my self help is done via phone or internet and two close friends. My younger sister is also a research fiend and lets me know about different valuable projects.
Take care and keep asking. Knowledge is power 🥰🥰
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 ♥️🌻
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.🤣
