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AllyJay
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Joined 9 years ago
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Re: Share your views: Information and support needs of people following treatment of breast cancer
I don't know that I qualify...time wise. I had neoadjuvant chemo in 2016/7 and surgery mid 2017, but am still on letrozole, so I'm not sure if that means I'm still on treatment, or if I've finished 'active' treatment more than 30 months ago. I'm not sure why there's a time cap of two and a half years...surely my experience of treatment eight years ago is as significant as those more fresh off the conveyer belt?Re: 7 year diagnosis anniversary is today ..... how time flies!
May your good health continue @arpie. You've been a steady hand at the helm for many newbies (and oldies who chuck the occasional wobbly...including me). A true friend to have in your corner. Paddle your 'yak...may your lines (fishing) always be tight...and keep your ukelele strumming...xoxo.Re: Hormone blockers
I've been on Letrozole since mid 2017...so 7 years now. I have other medical conditions Autoimmune), which include systemic scleroderma, dermatomyositis, Sjogrens syndrome as well as antiphospholipid antigen syndrome. All are mixed connective conditions which affect the collagen in my body and it affects my kidneys, lungs, heart, skin, joints, tendons, muscles, ligaments and blood vessels. As a result, current issues in these areas of my body are hard to tell which is from what. My rheumatologist has told me that my problems are well in line of what he would expect with these conditions after seven years and that they would exist, letrozole or not. Aside from that, the only symptoms I can attribute to the letrozole is some hair thinning and some vaginal dryness...both of which are acceptable if it continues to keep the Cancer Clowns away.Re: Newly Diagnosed - Diabetes & Treatment Side Effects
Hi there @Dee8855...welcome to the group nobody thought they'd join. I had chemo and surgery in 2016/7 and although I wasn't diabetic at that time, I did have (and still do) a blood clotting disorder which had me on blood thinners (warfarin), which had to be changed to an injectable one...clexane. I was also on a few other medications to control my autoimmune conditions, and these were stopped except for my prednisolone. My medical team worked with each other to manage my situation, and when chemo and surgery were finished, I went back onto my old regime. I'm on a hormone suppressor(letrozole) and have been since 2017. I now also have steroid induced diabetes and take forxiga and gliclazide for that. Hopefully your medical team will all work with each other with your care.Re: Triple Positive Breast Cancer
Hi there @Ned01...I'm so sorry you've had to join our group, but welcome. I was diagnosed with Stage 3, Grade 3, Triple Positive, Multifocal (more than one feral lump) and with node involvement. That was in September 2016 and after 4 X AC chemo, followed by 12 X Paclitaxel and 17 X Herceptin, double mastectomy, full node clearance on the left and sentinel node on the right....I'm still here...still NED (No Evidence of Disease). I wish you well with your ongoing treatment. Big hug...Ally.Re: Calm before the storm
Hi to you both and good luck with chemo. When I was on AC chemo, I more or less lost my sense of taste...well not lost, perhaps more changed would be a better word. My mouth tasted like an old, wet dog smells and most foods just tasted like boiled cardboard. I went totally off chocolate and also coffee. I developed a liking for salt and vinegar chips as the sharp and salty taste seemed to get through the wet dog. I had problems with mouth ulcers and found that acidic foods such as tomato, orange juice, pineapple and the like, burned my mouth. I found the lemonade icy poles really good to numb my mouth before eating, and again, the slightly tart taste made my mouth feel fresher. Each person has different experiences, and as a dietician(from a large Sydney hospital) told me, "If you can eat it...eat it...you can worry about 'healthy choices' after chemo."Re: Intro + Neoadjuvant or Adjuvant Chemo?
Hi there @byo_boy...I'm so sorry both your wife and your supportive self have gained admission tickets to our not-so sought after group. My story is this. I was aged 57 in 2016 and was diagnosed with Stage 3, Grade 3, Triple Positive, Multifocal (more than one little sod) in the left breast, at least 1 axillary node positive and so called 'abnormal geography' in the right breast. I was told I'd have neoadjuvant chemo, followed by surgery. I was not a candidate for radiotherapy due to a different medical condition. To be honest, being a public patient, I was rather sceptical about the sequence. I thought that their surgery lists were waaay too long, and so they were going to do the chemo to keep me in a holding pattern, as it were, until they'd do the surgery. My first instinct was give me a weedwhacker and I'll do the job myself. Eventually sanity (well my hubby would question that) prevailed and I got on with it. The pathology for the removed left breast and full node clearance showed no active cancer cells, only the 'empty tumour beds'. The removed (at my request) right breast showed numerous areas of abnormal cells with a dark history of going bad...so I felt good that I'd pushed for both and got rid of it before it too went feral on me. So for me, I trusted my team...after all this is their bread and butter in their chosen medical speciality...and my result was good...in fact excellent. I still remain NED (no evidence of disease) and just keep on keeping on. My very best wishes to you both and hope that all goes well with treatment. Best wishes...Ally.
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Flat Chat - no breast reconstruction
PRIVATE GROUP. This group is a safe space for those considering, actively choosing or not have had a choice to stay flat after a mastectomy. Whether personal decision or one shaped by circumstance, you're invited to connect and share your experience and images with others on a similar path. Information shared is based on personal experience and not intended as medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️Posts may include images of surgical outcomes, which some may find distressing. If you need support, please contact the BCNA Helpline—we’re here for you.
