Anyone on the EXPERT trial? New here :)

JacquiefbJacquiefb Member Posts: 4
edited September 12 in General discussion
Not a club anyone wants to join but here we are...

Comments

  • ArtferretArtferret MelbourneMember Posts: 229
    Welcome @Jacquiefb ...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
  • JacquiefbJacquiefb Member Posts: 4
    Thank you @Artferret - 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
  • Felicia29Felicia29 Member Posts: 23
    Thanks for this post. My med onco said it's likely I will be asked if I want to join this trial so I'm trying to find out what I can. I am more concerned about the side effects of the hormone inhibitors than the radiation but I can't find anyone who has opted not to take them. All these things I never thought I'd be researching but I take comfort in knowing that I am early stage and things look positive if not perfect.
  • JacquiefbJacquiefb Member Posts: 4
    Hi @Felicia29 I actually chose to go off he hormones after 2 months. I couldn't stand being thrown back into menopause and didn't like the look of the long term effects. I have just finished the course of radiation, a better option for me. I'm still on the trial despite changing my mind :) I think it's important to know you have choices. 
  • Felicia29Felicia29 Member Posts: 23
    Thanks @Jacquiefb Totally agree about choice, and also control. I'm growing more confident about asking questions and saying no if I think that is what is best for me. 
  • Di1965Di1965 Member Posts: 16
    Hi. I am on the Expert trial. Just today was told i am Arm B so no Rads just letrozole. I cannot sleep wondering and worrying i have done the wrong thing. I filled my prescription today and will start meds tomorrow. Such uncertainty and worry. Any advice would be grateful. 
  • ArtferretArtferret MelbourneMember Posts: 229
    Hi @Di1965
    I am in arm B as well and have been on letrozole coming up 2 years. First mammo was clear and am expecting the second one due next month to be clear as well. You haven't done the wrong thing it's just the level of uncertainty that you are feeling now. I looked up it as, well i have rads up my sleeve should i ever need it. I know said this before but i had to happy/comfortable within myself with the thought of being in arm b. Have i regretted not having had rads? No way! Also if it gets to be too much of a worry you can back out of the trial any time. Best of luck with letrozole and i hope you don't cop too many of its side effects. Cathxx
  • JacquiefbJacquiefb Member Posts: 4
    @Di1965 Do what feels right for you. You can change your mind. You do have a say. Radiation should be done within 6 months of the operation so you have that time to change your mind.
  • Di1965Di1965 Member Posts: 16
    Thanks @Artferret cath and @ jacquiefb. I had a bad night last night and have been a sad sack today! I appreciate the advice and i just need to get my happy on and charge ahead. I only started the meds today so here's hoping they are kind to my body. There are so many women who have lots harder roads to travel...so sending all a big hug. 
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