BCNA Online Network
Anyone on the EXPERT trial? New here :)
edited May 6
Not a club anyone wants to join but here we are...
...and yes it's not the club you want to join but you will get heaps of support so ask us anything and i mean anything.
In answer to your question...Yes, me! I was number 3 to join 18 months ago through Peter Mac in Melbourne. I was stage 1, grade 2 and 2 lumpectomies as clear margins were not gained first time, too much DCIS around the cancerous area. I was randomized into the endocrine therapy only group which was fine. It just meant that should BC come back down the track at least i had rads up my sleeve...well that's the way i looked at it. First they do the Prosigna (Pam50) test to see that you have luminal A type of BC and that you have a risk score of 60 or less (not that you find out that score, neither do the researchers). If that comes up all good you are then randomized into one of two groups, standard treatment or endocrine only. If you end up not being eligible you will probably end up going down the standard treatment track anyway...unless you choose not to and it is your choice. In the first year there are a few questionnaires to do which assess your physical and mental health wellbeing. After that the questionnaire is just once a year. My study doctor is my surgeon but that's cos she wanted to be. Follow up is as normal, mammogram once a year and seeing your surgeon and onco once a year. It runs for 10 years, you can back out any time. They are open to you having a drug holiday so long as it is no longer than 3 months. I'm about to have a break from letrozole in June for 2 months. Read all the documentation they give you, ask heaps of questions and at the end of the day you have to be totally comfortable with the knowledge that you may not receive rads. If this does not sit well with you then don't be part of it. Oh and my first mammogram post BC was clear. If you have any other questions just let me know. Hugsxx
- bit of an art ferret myself. That's great info. I decided to give it a go because I wanted to avoid radiation therapy - 1 lumpectomy, 9mm tumour, no spread. Very lucky - through Breastscreen. My first interview with them tomorrow in Box Hill. You know, some years back mastectomy was the treatment of choice, unnecessarily in some cases. Now radiation is the treatment of choice for lumpectomy/early BC. If it's not necessary, I'm happy to be part of finding that out. Plus my brother is an oncologist and said you get pretty good care and follow up on trials
It's worth the risk. Then again, I may get into the radio group... Thanks again x Jacquie
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