Genetic sequencing

[Di16]

I posted recently that my oncologist had suggested genetic sequencing at my recent telephone appointment. Last week I went in to Addenbrookes to see another dr about it. My onc hadn't told me that what they were suggesting was a genetic testing sponsored by a drugs firm to see if any patients tested would be suitable for a phase 2 trial of one of their new drugs. I decided to go for it anyway, hoping that if I'm not suitable for that, it might show up something else. They're expecting it won't show up any genetic problems like BRCA because I have GCT (granulosa cell tumours)' which are normally caused by a mutation of FOXL2 gene which happens in the patient's body, & is not inherited or passed on to family. Di

[Lyndy]

Sounds interesting Di and as you say, you don’t have to do the trial if you don’t want to xx

[lesleysage]

Hello Di16,

I've clear cell carcinoma, first diagnosed June 2011 with a recurrence 2013, and became a Patient rep for CR-UK and University College, London Gynae Trials. Without those of us with the misfortune to experience these cancers volunteering to be screened, and hopefully then accepted for, these trials, new developments could not be explored. Only new developments which are considered to offer better outcomes than the 'normal' treatments will be trialled; you are also very closely monitored, so should get very good care.

My gene testing showed no BRCA gene involvement and, because amazngly my clear cell is "nowhere to be seen", I remain a Patient Rep and not a Patient participant at the moment.

As Lyndy says no-one will put you underpressure to join the trial and if you choose to do so at the start but then feel doubtful, you can withdraw at any time and return back into 'normal treatments'.

Take care, stay safe and good luck with your treatment and/or trial.

Lesley

[Di16 in reply to lesleysage]

I tried to get on a phase 1 trial a few years ago, I think it was 2014. But I am diabetic, & for that trial, blood sugar had to be below 7. On the day I was to start on the trial, my fasting blood sugar was just over 7, so I was sent home, & advised to return next day to start chemo. This time, 2 trials were suggested. One of them, I've said I definitely don't want to consider at this stage, as it involves chemo. I'm considered to be vulnerable if I get covid, & spent a few months shielding this year, so I'm reluctant to have chemo at present & become immunosuppressed while the pandemic is still on unless it's really necessary. The one the genetic testing is for, I'm not sure what to do at the moment. Di

[lesleysage in reply to Di16]

Hi again Di16, if you are being given a deadline to make a decision then maybe talking it over with Anna, Julia or Laura on the Ovacome Support line may help? Taking care of yourself has to be the priority. Warm wishes, L x

[Superkim]

I say get the genetic testing, you're not obligated to be part of any trial. However, it's very good to have that information so that as more targeted therapies become available, you will already have the info to see if any are applicable to you.