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 alone167Views0likes13CommentsBreakthrough bleed after first dose???
Hi all, after finishing 15 rounds of radiation therapy, i took my first dose on tamoxifen at 10am this morning, only to develop a breakthrough bleed by 5pm. I am perimenopaul and my last period was in Nov 24. I will be contacting the Doctor tomorrow but has anyone experienced this? Do these bleeds stop on their own? Thank you in advance.54Views0likes4CommentsEarly Breast Cancer Treatment Decision
Hi All, I recently was diagnosed with early breast cancer (stage 1, grade 2, HER Negative, Estrogen & Prog positive, no lymph nodes involve) three weeks ago I had a double mastectomy with tissue expanders for reconstruction. I now need to choose my treatment for post surgery. For my particular case the percentage for survival purely doing the double mastectomy surgery alone is 95% when I add hormone blocker treatment it adds another 1% so 96% total which has been recommended by my oncologist to take which I will. I have been also given the option to decide if I want to also do chemo or not, the percentage benefit for my specific cancer is less than 1% at about 0.3% (so the percentage still stays at 96% survival) Is there anyone with a similar case to mine and what you decided? Or if it was you what you would do? My immediate thoughts are for a 0.3% benefit that going through 6 months of chemo with everything that comes with that is perhaps not worth doing it? The other thing I will point out is if there are any tiny microcells left in my body anywhere that hormone blockers will stop them dividing and growing, but chemo would actually kill them. Bearing in mind there is no guarantee either way that reoccurrence will or won't happen. Thoughts?64Views0likes2CommentsScared about the side effects of treatment
Hello everyone, I'm 35 with two young girls- I was initially diagnosed with LCIS just after a routine scan- but after my mastectomy surgery 2 weeks ago, the pathology has come back that I have HER2+ estrogen and progesterone + Lobular carcinoma, but thankfully no spread. It was a real shock as I was not expecting this news, thinking I would only have to have the mastectomy and that would be it. I am starting chemo, immunotherapy and hormone therapy in a few weeks. After what I thought was going to be a relatively straight forward recovery after my mastectomy and 6 weeks off work the oncologist said I am now looking at 6+ months off due to the upcoming treatment. I am feeling a bit overwhelmed and sacred about the effects of the upcoming treatment on my overall quality of life (and caring for 2 young children!). I will likely lose my hair with the chemo- the oncologist mentioned I could try the cold cap therapy- for those that have had it has it made a significant difference (the Dr said it takes a long time each chemo session to put on and off!)? I would also appreciate any insight into how to approach looking for some counselling support as well- would it be best to go through a GP or...? Thank you for reading, I'm so glad there is a support network like this available- I feel very alone so far. xx793Views0likes26CommentsExemestane & cardiac symptoms
Hi all, Apologies if this has been covered before but I am hitting a brick wall with my oncologist who has denied any knowledge of problems with taking anti hormone treatment such as exemestane and it aggravating pre-existing hypertension & heart palpitations. I stopped taking exemestane and my blood pressure average dropped 20 points and the bad headaches also stopped but my oncologist doesn’t think the drug caused the blood pressure problems. All they want to do is push another drug but I don’t want a repeat as it adversely impacted my ability to work & I didn’t feel safe as I had a hypertensive event whilst exercising. Has anyone else experienced similar problems as I can’t believe I am the only one to have this happen to although my oncologist said she had “ never heard of this before” or know of any current studies or literature I can show my oncologists? I feel like I’m being fobbed off and being labelled as an inconvenience as not wanting to tow the easy treatment line. Being in a regional public health system is also probably not helping with the quality of care & concern. Any suggestions would be welcome. Thanks185Views2likes10CommentsUsing '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!66Views0likes2CommentsAcupuncture
Hi all, I've read a few of you mentioning acupuncture as a great natural approach to helping with menopausal symptoms and so I was wondering if people could share more with me? If anyone has recommendations for finding one that is trained to help that would be great too. I love Melbourne eastern suburbs if anyone has used one out here I'd love to hear about it71Views0likes3CommentsDone!
Yay! It's been 9+ years since diagnosis, surgery, treatments and my Oncologist has set me free! No more Aromatose Inhibitors, Tamoxifen. I have been on Tamoxifen, Letrozole, Aromasin and back to Tamoxifen. I endured the time with no breaks. Occasional side effects but the last couple of years side effects dominated. Legs swollen from the knees down and painful at night. Wearing compression socks! Had all other tests including Ultrasound on the heart as process of elimination. I am a carer for a younger sister with Dementia so I would say stress and Tamoxifen played a part. Now it's weird not to take something as I was so disciplined. Hug those near and dear as you just don't know Take care Those starting out hopefully you'll soon be where I am at, ecstatic and pleased that I persevered.....181Views2likes12Comments