Early breast cancer treatment decision
Hi everyone, I’d really appreciate hearing from others in a similar situation. I’m young, not (as) close to menopause, and recently had a lumpectomy for a 12 mm, grade 1, ER+/PR+ HER2- IDC. Margins were clear, and there was no lymph node involvement. My Ki-67 is low (10%), and I’ve been told I don’t need chemo. The surgeon noted there was no calcification and no need for PET-CT. No problematic genes. My doctor recommended both radiation and tamoxifen, but I’m feeling unsure. Looking at tools like Breast Predict for hormone therapy, the benefit to mortality risk is minimal (0.3% for 5 years, 0.7% for 10 yrs, 1.1% for 15yrs). I'm very healthy, exercise daily for years, healthy diet, don't drink or smoke. My breast are above average and their tissue is very dense. Women in my family have had rough menopause - incl. severe heart issues so I'm worried about the tamoxifen side effects, and I'm thinking an MRI (?) every 6 months is enough. Given how small and slow-growing the tumour was, and how low my recurrence risk seems to be, I’m struggling with whether I really need both/ either radiation and tamoxifen. I know they each reduce recurrence in different ways, but I’d love to hear from others who had similar pathology — especially other younger/pre-menopausal women - If you only did one (or neither), how did you make that decision? I'm meeting with the medical oncologist for the first time this Friday and keen to have an intelligent discussion that may challenge the conventional/ standard treatment. if you have any research to share - that would be wonderful! I'm grateful for any insights or personal stories you’re open to sharing — I’m feeling a bit stuck and trying to weigh peace of mind vs. quality of life. Thanks so much!
Zoladex
Hi, so I’ve just been started on zoladex and I’m wondering about side effects. I feel like I suddenly have IBS or something. I’m going to the toilet 5-6 times a day. Everything I eat is giving me stomach cramping, almost like continuous period pains. I also feel nauseous a lot. Is this normal? Has anyone else experienced this? Does it calm down after a while? I’m scared to start taking the letrezol as well now in case it all gets worse. I was sent home from work today, first day back, because I was doubled over in pain from the cramping. It’s ruining my life and it’s only been 2 weeks.
Nausea after 3 days on Exemestane?
I tried Exemestane for 3 days and felt really nauseaous and stopped taking it. Nausea went away next day. Has anyone else had this side effect after such a short time? I found one old post on Reddit saying the same thing. My oncologist questioned that I could get such an extreme reaction after such a short time.
Conceiving & Hormone Blockers
Hi all, I am looking for information on having children after breast cancer. I am meeting with my oncologist to discuss this further but want to understand a little more on what may be involved in trying to conceive during hormone blocking therapy. During chemotherapy, I have been on zoladex shots and once radiation finishes I will add an aromatase inhibitor. This is with a view of continuing the hormone blockers for 10 years. Thanks for your thoughts!
Letrozole - compound pharmacy
Hello I was wondering if anyone has had any luck with getting Letrozole made by a compounding pharmacy to reduce the fillers and preservatives that come with the commercial Letrozole? I am about to start Letrozole and am trying to minimise side-effects as much as possible from the get-go to increase my chances of staying on it - I am very sensitive to meds, preservatives, etc. With that in mind, I’m very interested in hearing people’s stories and experiences with compounding chemists and hormone therapy. Thank you all :)
Using 'the oil' for Exemestane side effects
Hi there, I'm curious to hear from people who've been using 'the oil' to treat side effects of hormone therapy. I've noticed people don't say the actual name of it, assuming it gets flagged?! To cut my long story short... Diagnosed in June, mastectomy in July, radiotherapy in August/September, and then started hormone therapy September/October. I'm on Goserelin every 28 days, plus Exemestane daily. I'm told this is the plan for the next 5-10 years. However, my joint, ligament and muscle aches are horrible! I've read similar side effects from others on here - where there's a joint, it aches, particularly overnight - I didn't even know elbows and knuckles could ache! My feet are so painful to walk on any time I get up from sitting/lying down. I'd heard a few people say the oil has helped them with these side effects. I've been taking it for 5 weeks now and am quite disappointed that I feel very little effect. I'm taking Altreleaf C B D 100 ISO - 100mg. I take 0.5ml in the morning, 0.5ml at lunchtime, then 1ml at 8pm. He gave me one containing T H C too (because I asked for it ;-) but I can't really use it as you can't have it in your system at all when you drive. I'm 46 and a mum of two young girls so driving is a pretty essential part of my daily life. I'd love to hear it others have tried the oil and had similar disappointment, or any success. I'd also love to hear from anyone who's been on Exemestane and changed to another drug - because I'm told it's brutal and not many women stay on it. I'm thinking my only option really is to switch to something else but worry it'll be the same! Thanks in advance!Hormone therapy and sex
Hello, it’s a bit uncomfortable to talk about but I can’t really find good tips. I’m only 29 and on hormone therapy. I have zero libido which I can even live with the problem is I have extreme pain during sex, I’m extremely tight, I start bleeding, it feels horrible that I started crying multiple times. I’m now extremely terrified of being intimate which makes it even worse. Every time I date someone and it’s about to get intimate I end things because im so scared. I tried lube etc. I can’t date anymore because at some point being intimate is part of it. And I’m too young to be single forever. I don’t know what to do it’s getting worse and worse. And I’m uncomfortable talking to someone I’m just dating about this, and obvisouly no man who is t invested in you yet will want to continue dating if you say you don’t want to be intimate. Does any of you have tips?Hormone treatments, tamoxifen and tendonitis
Hi there, I'm very new to this, but wondering if anyone has experience of tamoxifen and tendonitis? I've had two different types of breast cancer, but one side was HER2Positive so since January this year I have been on anastrozole. In late July I got extremely painful tendon damage - a torn and swollen hamstring tendon near my seatbone, so it really hurts to sit, and two other gluteal tendons with tendinopathy as well - no idea what set these problems off, but discovered that anastrozole, in reducing oestrogen, weakens tendons. My Oncologist said suspend it, so I haven't been taking it since early August. She later offered me a script for Tamoxifen instead. As Tamoxifen also is designed to reduce oestrogen I am wondering whether I should switch to it or not? I don't want a breast cancer recurrence, but my life quality at the moment is much affected by the tendon problem which is not healing very quickly at all. It's going to take many many months I think. If I take tamoxifen now will I slow down the healing? What should I do? Anyone out there had any experience with tamoxifen and tendons? Thanks for any experience you can share with me!!!
Duration of endocrine therapy in premenopausal Australian patients
Hello all Very long time since I’ve poked my head into this discussion forum. I’d like to hear what other younger pre-menopausal patients around the country are being recommend regarding duration of total endocrine therapy. I myself am now onto year 6 of ovarian suppression and AI, a choice I have continued although I could have switched to tamoxifen alone. Please comment with your doctors advice and your stage/diagnosis. Are you doing: 5 years ovarian suppression and aromatase inhibitor 7 years ovarian suppression and aromatase inhibitor 10 years ovarian suppression and aromatase inhibitor 5 years tamoxifen +/- ovarian suppression and then further 5 years ovarian suppression and aromatase inhibitor 10 years tamoxifen alone
