I have been to the genetic hospital today and they said that after finding out that i havnt got either BRAC1 or BRAC2 gene that I may have a gene called TP53. Apparantly this is a really bad gene and gives all different other cancers. I dont know if to have this test as im not sure that I want to know if I have this gene. I had BC last year at the age of 22 and not sure if I want to know that im gona get brain cancer, leucemia, bone cancer or muscle cancer. I want to live my life a little bit. Im sooo worried.
I got tested for the TP53 gene and am negative. If you do have it, as you say, you are at risk for other types of cancer. It is a big decision whether to have the test or not. Ignorance would allow you to live your life to the full without having to constantly worry about developing cancer. On the other hand, if you know you have a faulty gene, you will get far more screening done to detect cancer at an early stage. The TP53 gene runs in families so are there many cases of different types of cancer within your family, not just breast cancer? I did have a few types of cancer within my family, but not really enough to warrant a diagnosis of faulty TP53 gene. I did actually email a professor who runs clinical trials on Li Fraumeni syndrome and she was fairly certain I didnt have the gene even before the results came back. I think sometimes the geneticists will test even though you don’t fulfill the criteria causing lots of undue stress.
Thanks for that, I have only had breast cancer in my family and none of the others, I also have no history of childhood cancers and thats what im clinging on too. Who did you email? I have been told I have around a 3% chance that I have this gene, not high I know but I probably have it as its just my luck! I am so worried and I really dont know what to do for the best, i am only 23 and i dont know if I can go on for years knowing that I will get these other cancers!
Hi ladies
im being tested for tp53 based on the information from my nans diagnosis. She had 2 seperate cancers bowel and brain tumor. My mum and her brother have no cancer. my cousins have not had or got cancer and my sisters the same. Its just little old me.
in a way i want to know but then i dont.
im really having a wobble about this now.
The breast tumor i have now has responded well to treatment and has gone im dur a lumpectomy in a couple of weeks then rads. But if the genetics come back positive this shot storm is far but over.
i want my life back and god forbid this is genectic and my kids have it. I dont know what i’ll do
joanne
Hi. Did you get your TP53 gene test back. I’m currently waiting on results. I had originally got for the BRCA testing but didn’t fit the criteria for it but based on my pathology the genetic counsellor said there was a small chance I had the TP53 mutation or Li Fraumeni syndrome as she called it. I have no family history but I do have a strong bowel cancer history from my nans side of the family.
If I’m honest I believe it will come back negative but the wait for results is still a killer. Throughout my whole breast cancer journey I think the worst part of it is all the waiting you have to do. Waiting for treatment, for results, for surgery etc. I’m still waiting for the fear of recourrence to go away after 2 and a half years.
I was tested for BRCA1, BRCA2 and TP53, all of which came back clear. My genetic councellor wasn’t happy to leave it there as I had had breast cancer and also my mum and grandmother.
I was diagnosed with CHEK2, which is also a mutated cancer suppresent. I now have yearly scans for thyroid, kidney and colonoscopies every 3 years. I have also had a full hysterectomy as a preventive surgery.
It is such alot to take in, I hope you get the answers you want.
Sorry for not replying before but I haven’t been on here for awhile.
Hi. Is TP Lynch Syndrome? I’ve received my questionnaire today in preparation for meeting genetics team. I had a total hysterectomy 5 years ago due to endometrial cancer and now BC. I’m trying not to worry too much. I’m ok about me but worried for my daughter. X
I have a mutation of gene TP63 which is a sister of TP53. It can also cause other cancers. I’m going to have the test. I’d rather know than not know and there may be some preventive treatment that I could choose to do.