Hi, can anyone help me make a decision. I have been asked to think about taking part in the radiotherapy trial.
This is either 3 weeks normal dose or 1 week higher dose radiotherapy. Has anyone had the higher dose and what are the side effects?
They will be treating my left side so I am worried about the effect the higher dose might have on my heart. It is less over all but more concentrated on the day.
Hi Mell,
Welcome to the BCC discussion forums, where I am sure your fellow forum users will be along shortly to support you.
To help you along I have put for you below links to some of BCC’s information you might find helpful, I would also suggest that you give our helpline team a ring and have a chat about this trial, they’re here to support you. Calls to the helpline are free, 0808 800 600.
www2.breastcancercare.org.uk/publications/treatment-side-effects/clinical-trials-bcc24
breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/clinical-trials
Take care,
Jo, Facilitator
Hi Mell,
Think I may be in the same boat as you shortly. I’ve just been for my results of ANC and whilst there is no further sign of cancer in them [which is good] they mentioned my having radiotherapy for the first time, which has thrown me a bit. As I understand it I am to be referred to the Supremo Trial and am now awaiting a consultation. I’ll use the links in the previous post to see what I can find out Sorry I can’t be more helpful but its good to know neither of us is on our own. Hopefully someone else may have had a similar experience in the past
Shazza
Thanks Shazza, its not nice having to make a decision. They are phoning me in the morning to see what I decide. It will be a long night. Thats why I am wishing someone will let me know if they have been on the trial and how they feel. Good luck with your decision. Hope everything goes well for you.
Hello to you both ,
I too was offered the Supremo trial last year and after much research and heartache trying to make my mind up I decided NOT to have Rads at all, as I was a borderline case and the Onc did not know if I needed it or not ? It was my decision. When I finally made my mind up it was the Registrar , but the Onc still phoned me to check I was sure. I think they like to have so many ladies take part in the trial for future reference, but I was scared of my ribs getting damaged as I had spinal surgery when I was 14 and my ribs are displaced.
I did have Chemo Fec T and made friends with two girls who both decided to have Rads as they wanted the belt and braces approach to getting rid of the Cancer , so try and remain positive and if you need to ring the helpline for more help dont hesitate ,that is what they are there for and why we try and raise so much money.
Take good care of yourselves, Sending you big hugs Tracy xx
I now have until the 16th to decide. has anyone had the one week therapy? how do you feel?
Hi
I am taking part in the Supremo trial…I had to go in a lottery on a computer!!!..I only had the 2 sentinel nodes affected with mets…I say only…2 out of 11 is quite enough for me…as I had less than 4 nodes affected I did not recieve the rads…I have to fill in this little booklet and send it off to the nurse in my oncy unit…my onc said as only 2 were affected chemo was enough…I hope so!!!..I had 3 fec and 3 tax…I think it is a matter of personal choice.
HI IM DOING THE FAST FORWARD TRIAL I START ON THE 14TH NOV MY ONC SAID THE SE MIGHT BE A BIT WORSE BUT I WOULD HEAL QUICKER TO 1WK SEEMS MUCH BETTER THAN 3 IV 2 HAVE A BOOSTER TO SO IT WORKS OUT 10DAYS WHICH IS FAR BETTER THAN 20 GOODLUCK WHATEVER YOU DECIDE XXX
Thanks, hope it goes ok for you. I think I will join it one minute then the next I think not, my emotions are like a see saw at the moment. The radiotherapy is stressing me out more than the op to remove cancer. Stupid isnt it.
no not at all i was terrified before my surgery but it went ok iv not thought much about the radiotherapy will prob be more nervous nearer the time your defo not stupid it just like an emotional rollercoster trying to take in all this new info goodluck xxx
hi just to let you know im almost finished my rads on the fast forward trial and all went great would recommend it to any one who’s offered it my skins been great and the se arn’t that bad xxx
Hi Mell, I guess you will have made your decision by now - I wonder which way you went? I have today been asked to take part in the Fast Forward trial and am experiencing all the emotions you described. My greatest fears are having a recurrance if the lower dose treatment is not enough, and also the cosmetic effect - I have a vision of me with a small tangerine on my chest wall! Big but gentle hugs for you,
Liz
hi ive just finished the fast forward trial and have been absolutly fine i read on a post somewhere just to use cream if needed and got through my full treatment without using any cream my breast just looks as if it has a suntan i washed with sanex zero shower gel and used sanex zero deoderant there’s no metals or parabens in them also i was told that i was given a higher dose during the trial so it was realy like getting 15 rads over 5 days then i had 5 days of boost to the tumor area i personally would highly recommend it 10 days was brill compared with 4-5 wks good luck but whatever you decide xxx
hi ive just finished the fast forward trial and have been absolutly fine i read on a post somewhere just to use cream if needed and got through my full treatment without using any cream my breast just looks as if it has a suntan i washed with sanex zero shower gel and used sanex zero deoderant there’s no metals or parabens in them also i was told that i was given a higher dose during the trial so it was realy like getting 15 rads over 5 days then i had 5 days of boost to the tumor area i personally would highly recommend it 10 days was brill compared with 4-5 wks good luck but whatever you decide xxx