New to all of this. Had surgery 5 weeks ago. Waiting for details of further treatment. I have signed up to the Optima clinical trial. Is anyone else taking part in this?
Thanks for your reply. Yep, the Optima trial is where they do genetic testing on the cells.
I find out next week whether Chemotherapy is on the cards for me...... scary stuff. I'm clinging hold of the 25% chance I won't need it, but am gearing myself up for the 75% chance that i will.
I'm doing thr Optime trial, and was selected for chemo. My oncologist works at UCLH (the hospital where the doctor in charge of the trial works and the Prosigna testing is done in thr UK) and my hospital twice a week.
Shor told me that the computer allocates you a number which is randomized into one of the two groups. Half are given chemo as normal protocol and the other half are all tested. She said that based on thr pretrial results and results from node-negative women tested she'd expect between 10-15% to be considered higher risk and the rest low risk. She also said that oncologists have no way of finding out what group their patients are in as they could be biased and tell them!
I was given chemo, and have done 4xEC already and 3x Paclitaxel. To be honest although I really didn't want it, and had a mastectomy with clear margins, no LVI, 1 node positive and nothing in any other nodes to level 3 clearance according to my report, so didn't feel I was high risk, but who knows. it added 4% over 10 years to my statistics. I feel horrible for having it but safer in the knowledge I tried everything. It's not easy, but the five months pass fairly quickly. I've still to have my first follow up questionnaire, but i expect it will be at the end of chemo.
You must be nervous waiting to find out either way. At least if you get no chemo it will be a scientific test which has assessed you:)
Good luck!!!
Margaret
“Remember to look up at the stars and not down at your feet. Stephen Hawking,
I'm expecting the chemo, preparing for the worst so anything else is a bonus. I've been lucky in that no one has mentioned mastectomy. Fingers crossed that remains the case. I know I have the radiotherapy and a million years worth of hormone treatment to look forward to! I have enough trouble remembering to take antibiotics for a week...
Many thanks for your message. I was wondering if anyone else was on the trial or had heard of it.
To be honest i just want to know whats happening and get on with it. The sooner whatever it is starts, the sooner it finishes!
Just starting to fill the first questionnaire in. It's all a bit long winded isn't it!?
Oncologist has told me if I have to have chemo it will be 3rd generation chemo and most women sail through it. Pretty sure he was just trying to make is sound ok....... it didn't work and I have a real issue with losing my hair. Guess it will just be another thing to deal with in this little escapade.
Hi Ali, third generation is EC or FEC (second generation) for 3 or 4 cycles followed by either Paclitaxel (12 x weekly or 4 x fortnightly) or Docetaxel for 3 or 4 cycles. Take a look at the November (and October) Chemotherapy Thread to get an idea of what it's like and how different everyone reacts, even to different cycles of the same drug.
“Remember to look up at the stars and not down at your feet. Stephen Hawking,
Many thanks, I'll take a look over the weekend. Today is my birthday, so no thinking of cancer, or chemo or anything else related. Today is for shopping, lunch and cake!
I know some ppl really struggle with chemo, I was lucky I didn’t get many side effects and apart from the last three chemo when I was ill for a couple of days after time, it wasn’t all that bad. I’m glad I did have chemo. I know i threw everything at it and I’m getting on with my life now.
Chemo is no fun but a necessary evil to the road to recovery.
Please keep in touch and let us know how you are getting on.
have a good day 
