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
Bad doctor experience
So, I had an interesting appointment yesterday with a neurophysiologist. I got carpal tunnel syndrome last year after taking Letrozole, and have since changed to Arimidex. I still have tingly fingers, but I can feel things and my hands are stronger, so decided to get reassessed to see if I could avoid surgery (simple and short surgery but loooong recovery period). After the test, he was telling me the results, but was very confusing. He said I’m not an oncologist, all I can tell you is from what I know. But you’d need to get assessed based on your whole history. Me: ok, so should I book another appointment? Him: no! You’ve already done it! Me: ...so then should I have the surgery? Him: I can’t tell you what to do without a full assessment without taking your history into account! Me: so how would I get that? Him: you’d have to make an appointment with a neurologist, like me, and get it checked. Me: so then I do need another appointment, where the doctor could check everything and then tell me what to do. Him: no! You don’t need another test! You’ve just done one! Me: 😶. Him: you’ve got this condition, it’s not going away, so based on what I know, I’m telling you fix it! Me: ok, I know it needs fixing and surgery is probably best. But are there any known long term effects of the surgery? Him: long term it will kill you! Me: 😳😳😳😳😳😳😳 Him: you had bca, did you have surgery straight away or wait? Me: straight away, in my case. Him: so there you go. At this point I decided to leave. Very confused and very down. Am I wrong to think you can’t compare ca with carpal tunnel syndrome? They don’t work in the same way. And not all bca patients have surgery straight away. But most importantly, he didn’t answer my main question, about the long term effects of the surgery and recovery time. He just mentioned the word no one wants to hear in a doctor’s office: ‘kill’. I googled afterwards and there are different ways to control carpal tunnel syndrome, none of which he mentioned. Also, my results were not worse, if anything they were better. But it was just the attitude. And whenever I tried to explain smth quickly, he’d cut me off straight away and waffle on for ages, then still not allow me to speak. Is it my imagination, or was this experience really bad?
capecitabine (oral chemotherapy) after AC/TAXOL, radiation and surgery
Hello! Just wondering if anyone has been offered capecitabine additionally to their care after having standard of care treatment for Hormone positive, Her2 negative BC. I am 29, have completed 8 rounds of chemotherapy plus surgery and will be having 25 rounds of radiation. My oncologist has recommended 6 months of capecitabine as an additional adjunct therapy. I had a second opinion with another oncologist and she didn't seem to have the same opinion. I have done a little bit off research but there isn't a lot of people with hormone positive BC that have been offered this (that I can find). Thoughts? Thanks ladies! xPMS during menopause 😳
I never thought I’d say this, but I’m really looking forward to my Zoladex injection tomorrow. Why? So it will continue to keep me in artificial menopause, so these PMS symptoms can bugger off again!! 🤨. So yeah, PMS and artificial menopause, both at the same time. Who woulda thunk it. So basically, I get 3 weeks of feeling wonderful, and then one week of feeling moody, overly sensitive, angry, sore, tired etc, just like I did when I was not in artificial menopause. Had to check with the McGrath nurse to make sure I wasn’t going insane, and yeah, Zoladex tends to start wearing off towards the end of the 28 days, before the next injection is due. Feeling these PMS symptoms again, after having felt the freedom of not having them, made me realise just how tough they were, and how hard it was going through all that every single month for almost 30 years!! Not to mention the actual period, which lasted 7 days and was heavy. My goodness, what a freaking Wonder Woman I am!!! All that, while working and life in general!! And then for men to have the audacity to say to me ‘why are you so angry??’ Knowing full well exactly why 🤦🏼♀️🤦🏼♀️🤦🏼♀️. On top of that, my right hand is numb and weak thanks to Letrozole. I can’t feel anything with it. Can barely open a jar. Joints and body aches when getting up, takes a minute to be able to walk and move. All I gotta say is, to all of us incredibly strong and wonderful women, is: I am strong, I am invincible (although don’t always feel like it), I am woman! 👊🏻💪🏻🦸♀️👏🏻👏🏻👏🏻. It’s slowly becoming my new favourite song. Love to all ♥️ M Xxx
Young Women's Group
Hi all I've started a little introduction thread over in the Young Women's Group as I'm trying to make it a little more interactive so us young women can make some new connections and to let you all know I'm here (as well as other members) to help support you and answer any questions you might have specific to age during a breast cancer diagnosis. If anyone wants to connect, would love to hear from you <3 Wishing everyone a safe Easter Kate
How to continue my ongoing oncology care in SYDNEY??
Hi! I was diagnosed and treated for early stage breast cancer (DCIS grade 1, ER+ PR+) at 29 y/o, a few months ago, in Sweden where I work. I had planned to move to Sydney in September (my husband got a job there) but before doing so, I need to make sure that I can properly continue my endocrine treatment in Sydney: 1) Anyone knows what is the fastest/cheapest way to get my Letrozole prescription +injections of Zoladex (Goserelin) every 4 weeks? I need to make sure that I can get the injections on time once I moved to Australia. I found the cost of both medicines on PBS website but what is the cost of the doctors appointments (to prescribe and to inject Zoladex)? 2) Is it also required to do a blood test (to check hormon levels) every months when you take Zoladex? Note: I am not Australian but I will get the yellow Medicare card (due to a health agreement between Australia and Sweden). Thanks in advance for your help!! I hope I will be able to relocate to Sydney and live my life as before... :smile:
An overdue introduction
They say better late than never right?!? I really would like to properly introduce myself to all of you amazing ladies and men! I have been employed here at BCNA for 8 months but have admired you all from a far. In October 2013, like many of you, I was diagnosed with breast cancer. I was 36 years old, had just recovered from severe post natal depression and had a 3 year old and 7 month old at home. I couldn't believe that i had just tackled one illness and was about to fight the next one. After a lumpectomy, 3 months of chemo, a year of herceptin and a Double Mastectomy with DIEP Flap reconstruction, i am here, working my dream job (sorry a little tacky!!) and hopefully helping others, by trying to help you make the decisions we have to make not so scary and over whelming. I have been taking Tamoxifen for the past 2 years and plan to have my ovaries removed sometime in the next few years. I was never really active on the network during my year of treatment. But i just wanted to give you all a massive high five for being so courageous, open and caring to others going through the big C. I hope you don't mind if i comment every now and then outside of my BCNA capacity and please feel free to message me to ask any questions; I too will be as honest as you all are. Stay strong and big love goes out to this wonderful community xo
Aromatase Inhibitor (AI) vs Tamoxifen for premenopausal women
Hi all, I've been diagnosed with invasive ductal carcinoma, stage 1a, grade 2, ER and PR positive, HER2 negative, nodes all clear. Age 35. As I also found out that i am BRCA2 positive, I will also be undergoing a bilateral mastectomy. As the cancer is hormone receptor positive, I will need to start hormone treatment after surgery. I have consulted two oncologists and they have slightly different approaches: Oncologist 1 - Aromatase Inhibitor + monthly injections of Zoladex (start both concurrently) - the results from the recent SOFT trial indicate that the combination of Zoladex + AI is more successful at preventing a recurrence of cancer. - the downside could be that the side effects could include muscle and joint stiffness. Oncologist 2 - Tamoxifen + monthly injections of Zoladex (start with Tamoxifen first, then after a few months if all good, then start Zoladex) - gradual approach to minimise impact to body Are there any pre-menopausal ladies who are either on Tamoxifen + Zoladex or AI + Zoladex who could share your experiences? What was your reason/rationale for choosing either option..? What are the side effects that you have experienced..? Many thanks in advance.
Next step....
Hi i was diagnosed with breast cancer at age 29 in 2011. My daughter was 2 years old. I'm now at the point where my hormone treatment is coming to an end (I had mastectomy, chemo & radio). My oncologist wants me to have my tubes tied or overies out. He recommends no more children. I'm devastated. And now the clock is ticking. I have until the end of the year to make a decision and it seems each has its pros and cons. My GP suggested more hormone treatment but I'm not sure I like that option either. I wish I could just go back on the pill. Not an option though as everything is hormone driven. Has anyone been in my situation? I have two injections left and then its crunch time. Please help!
Hormone Blocking Treatment
Hi Everyone Earlier this year in February I was diagnosed at the age of 27 with Breast Cancer. After 5 surgeries and having a full mastectomy on my right breast, I completed my harrowing 18 wk treatment plan knowing that I was to be on hormorne blocking tablets for 5 years solid, which is now to start. I have a debarkle that I am facing at this point in time and would love to know everyone's thoughts.... I am in two minds about whether i want to really take these hormone blocking tablets or not. I do realise that this part of the treatment plan and that it is a good thing, however do not like the fact that I am unable to have children over this time frame, etc. I currently find it hard talking to those around me as no one has been through a similar thing, and if they do know people who have been through this they fall into the much older woman catergory.