CHEK2 gene mutation

Hi All, 

I have volonteedred my Invasive Lobular Breast Cancer tissue to the reserch. Yesterday, they phone to share that I havea  rare genetic mutation CHEK2 - instead of two copies of this gene I have only one copy. My understanding is that this gene when healthy is suppressing the tumor. Reading online I understand that I am more vulnerable to other type of cancers. The literature also points that radiation (CT Xrays etc represents the possible danger)  Does anybody have experience with CHEK2 mutation?

thank you 

  • forgot to say that I am expecting to undego Radiotherapy for Breast Cancer (Invasive Lobular)  so now I am worried that Radiotherapy is going to make more damage than benefit ...

     

  • Hi Gloria, and thank you for contacting us. I am sure this news came to you as a shock and it is not surprising that you would be looking online and questioning what will happen next. 

    It is difficult for us as cancer nurses to interpret gene mutations as people usually find out about these from genetic specialist or genetics counsellors. They are experts in their field and therefore able to answer these types of questions, but maybe others on the forum will come forward with their own experiences.

    What is complicated is that not every gene mutation is the same, and so situations are going to be very individual. Therefore what you read when looking online may not necessarily be what is accurate and right for you. With this in mind, be cautious about what you see and read, and if you can, maybe hold off until you are able to speak to a specialist.   

    I don't know if this would have any effect on your planned treatment, it might not, but do talk to your oncologist, tell them what you have read and ask them to explain more.

    I wonder if you have contact details of a breast care nurse who you could call or have an appointment coming up soon where you can talk this through further with your team. I would also suggest, if it hasn't been discussed or organised already, that you see and speak with a genetics counsellor or specialist.

    Take care Gloria, and I hope you learn more about your situation soon. If you want to talk these things through with one of the nurses on our helpline, the number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Sarah.

  • thank you Sarah on your kind words and signposting to the Oncologist. 

    I also have faith in experiance and knowledge of others so I will await for somebody who might be having similar experiance as CHEK2 is fairly new discovery. 

    kind regards to all