Hi everyone
I was diagnosed on 24th Jan and had a mastectomy and SNB on 12th Feb. I have grade 3 cancer with DCIS and lymph vascular invasion. The sentinal node was negative, however the tumor is HER 2 positive. I have been recommended to have chemotherapy and then Herceptin. My options are FEC or to take part in the TACT 2 trial. I have checked out the threads on this website and haven’t found anyone who has decided against joining the trial. As there is a good amount of feedback from participants I would be interested to hear from anyone who decided against it. I know that it’s good to be involved in the decision making for my treatment but this decision just seems to big for a layperson to be making - any advice on weighing up the pros and cons?
Hi there, I turned down the trial. The main reason was that it wasn’t presented very well at all by the oncologist, I was very muddled. It did eventually make sense when she drew a diagram for me, but only one outcome was potentially better than the standard 6 FEC. Also, I had a masectomy followed by axillary clearance, therefore 2 operations later I was tired and wanted things to be as straightforward as possible and just get the chemo over with. I do feel that by selecting the trial I would have been benefiting future ladies and their treatment so am in some ways a bit selfish, but it was the right decision for me. Do be aware that three out of the four outcomes of the trial involve more hospital visits and a longer time in terms of weeks. Good Luck!
Liz
Hi
I decided against the trial because I am self employed and couldn’t risk having to go many more weeks without pay - i could just about manage to not work through chemo for 6 standard treatments over 18 weeks but if i’d got into the group that takes 24 or more weeks to complete it would have become more difficult. I then also reasoned that for many, once their chemo is out of the way, that’s the end of hospital visits every three weeks - but as I was her2+ I knew I still had a year of IV infusions of drugs every three weeks on herceptin - therefore I felt that by extending my chemo and then doing a year of herceptin, it was just going to be too much of my life spent in a hospital. I did have moments of feeling guilty but then I decided that it was the right decision for me. All our our circumstances are different, you just have to work out for yourself what is doable for you and your life at that moment in time. Don’t feel pressured either way. All the very best, carrie
Hi JessieE
I too declined the trial, mainly for the reasons stated above by the other two ladies. I carefully considered all my options and mapped out what would be best for me. I know how difficult it is for you to decide which option to take, I have a medical background and have a good understanding of trials etc, even then it was a difficult decision. You have to decide what is the best option for you and you alone. Yes the trial will be of benefit to other people in the future (perhaps including ourselves) but what is best for you given your set of circumstances at this precise moment in time?
I personally felt that being randomised didn’t give me the control that I was looking for and that by opting for the six cycles of FEC, I reduce my chemotherapy time significantly and can move on to the next step, another step forward toward reaching some normality and my return to work.
I hope that you can make the right decision for you and, whatever you decide, that your treatment is successful.
Write again if you need any more support.
With very best wishes.
Janey x
Hi Ladies
Thanks for your comments, still not sure what to do but it’s helpful to hear both sides of the story so to speak.
Best wishes to you all
Jessie