Lobular breast cancer and chemotherapy/prosigna

I had a double masectomy 2 weeks ago  to remove 22mm ductal cacinoma in left breast and 55mm lobular cancer in right breast with 2/2 lymph nodes involvement tested positive on the right hand side through biopsy (lymph nodes were clear under screening).

I have been asked to take part i a clinical trial - OPTIMA  which will determine if chemo will be suitable - been told by oncologist that often lobular cancer can be unresponsive to chemo.

However if I take part in this trial I can get randomly assigned to either group A - who will all get chemo or group B who will get tested using the Prosigna test to determine if chemo is likely to be of benefit. The prosigna test uses a specialist machine to look at the activity of 50 genes.

I would rather not have unnecessary treatment like chemo - which I may get if i end up in group A and if I end up in group B and low score on Prosigna no need for chemo but still worried that I might not have had chemo when needed as I tested positive for lymph node involvment.

Nice to hear thoughts/experiences on 

Lobular cancer and the need for chemo - with lymph node involvment. 

The prosigna test would it be accurate if a low score- given the lymph mode involvment?

Oncologist said that the prosigna test is only available via the randomised trial (based in Scotland). Anyone know if its possible to do privately and how much it costs ?

Any similar experiences - gratefully read.

  • Hello Bobby786

    I'm sorry to hear about your diagnosis. I hope that you're recovery from your surgery is going smoothly. It's understandable that you're feeling conflicted about taking part in the Optima trial. Did the Oncologist say what your treatment plan would be if you choose not to take part in the trial? 

    Sometimes it can help to talk things through with someone and I wonder if you might benefit from chatting with one of our nurses. It may help to have someone to bounce your questions and thoughts off and they may be able to help with other questions that you might want to talk to your Consultant about. I'm sure they will be able to give you a little more information about the Prosigna test as well. If you'd like to talk to them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

    I hope this helps. 

    Best wishes, 
    Jenn
    Cancer Chat moderator