Genetic test results

Hi NeedingHope, I am sorry you find yourself here.

I was referred for testing in January/February finally tested May. I had video consultation only, then blood test and results over phone call. It was my 2nd diagnosis hence the referral, and I was awaiting the results so the treatment plan could be finalised. 

I was found to be negative for BRCA1/2. 

I know what a stressful time it is, and with backlogs and COVID I think communication isn’t great. 

My Surgical team were a great help as they pushed genetics for results. Maybe that would work for you?

PS I was told positive or negative probably initial results would be phone call, then if positive would be face to face with the Team.

Sending best wishes and hugs to you. Karen xx

Hi Karen, thank you so much for your kind response. I was told today via email that my results have arrived and they have booked a call for later in the week with the doctor to discuss these. Of course, I assumed straight away it would be bad news!  Eek what a journey! I find it cruel to let someone know the results are back, but nothing else for a couple of days. After all this waiting. Sometimes I feel I will not survive the anxiety! I am glad your results were negative and I am sorry you found yourself on this journey too. 
Big hugs xx

Hi NeedingHope, that was same for me, and a painful wait. 

I will be thinking of you, and whatever the outcome it’s better to get as much information as you are able to. I found the Genetics Team very understanding of my situation. I really hope you get a good outcome. 

Have you had surgery/treatment  yet? xx

Thank you, Karen. I have not had surgery or treatment yet. We were waiting for the genetic test results for a final decision (i.e. mastectomy vs breast conserving surgery). I am actually due for an MRI biopsy too this week as they found a small area that was unclear. But as we were hoping for genetic test results to be back this week and completion of tests too (I had tons of tests done to date), we were discussing a potential date for surgery in a couple of weeks time. Honestly I cannot wait for this unwelcome visitor to be taken out, but I do really hope no bad genes involved. That would be too hard on my family and I wish my young sister does not have to experience this at all. Xx 

Hello NeedingHope,  I certainly hope your genetic testing comes back negative as it will be a huge relief.  At least if they are negative you can make a choice for yourself and not have the decision made for you.  The MRI biopsy shouldn’t be too bad. I was supposed to have one but my breast was too small so off to the OR for me.  
Good luck with everything.  
Barbara

I had genetic testing - I was contacted directly by the laboratory doing the testing after my BCN referred me, They sent me a questionnaire on family history of cancer and then a few weeks after I sent that back I received the results directly from the lab by letter. They had also written to my BCN so they had the results too.

Thank you. It seems every hospital/clinic has a slightly different approach. I managed to move my call to this evening. I am really worried results would be positive. But there is really nothing I can do. Xx

At least you’ve got earlier call. 

It does seem to vary in each NHS Trust. My Breast Consultant wanted the testing for me but when she submitted the request forgot to indicate I was diagnosed and waiting further treatment. This then caused a  delay in testing. After the blood test there was a further delay in getting the results. So a long 3 months between 1st surgery and 2nd. 

I think whatever the outcome it’s good to have information. I know it’s really stressful, and I really empathise with you regarding your situation. Also I had multiple biopsies and MRI, but again all this information helps you and the team decide on the best treatment for you.

My thoughts are with you for later. 

Have you questions for them? xx

Of course it is stressful waiting for the results, but on the other hand, it is fantastic that you and your team will know more about likelihood of cancers developing in the future, which gives you more control in decision-making as it is from a place of knowledge. Good luck with your results.

Thank you, Karen. That means a lot

I did not really prepare questions as I was using my brain power to envision a negative result! Ha! I will look at some questions to ask online and if anything, I may ask the dr to give me time to process and then book an in person appointment. Xx