TP53

[ditzy65]

Hi Joanne

Isn't weird how different hospitals do things....I'm trying to put results to the back of my mind

but it keeps popping up...as you say if all clear we can start to move on

Take care

erica xx

[madamjojohunt]

Erica,
My hospital is in south london, kings college. They give rads to everyone who has a lumpectomy but they can hold off for a while if need be.
i got refered for genetics by my onc as im young and the type of cancer i have. im grade 2 stage 2 Her2positive.
i hate the waiting and the thought it could be a faulty gene. Im scared for the kids to.
I hope its just my bad luck and once i have my lump removed i just want it all to be over but i feel if its a faulty gene it will be far from over
joanne x

[ditzy65]

Hi Joanne

I hope your results come back before your surgery, i didn't need radiotherapy and the genetics said it would be better not to have any, but i guess your consultant will sort that oout. Where do you live, I have to go to Oxford for the genetics clinic and have had a battle to get testing done, it was only when i had breast cancer that they said they would test me. My mum died aged 27 of BC and my nan had BC inn her 60s, now i'm 3rd generation, big coincidence!!! i hope so.

The waiting is the worst, limbo land...

I hope you get the answers soon, will be in touch xx

[madamjojohunt]

Hi Erica
i only had my testing done on tuesday. She ruled out the BRCA gene as my history had no concern for her. No bc or ovarian in the family. She then bought up the TP53 gene which id not heard of so panic there already.
she sugested it may be due to the fact my nan had 2 cancers one was a brain tumor which she said is linked to bc. no one else in my family on my mums side has had or got cancer just me. My mum is 66 i am the eldest child of 3 girls.

Im due surgery 9th june just a lumpectomy but if results come back positive it will be dmx And recon.
i think my surgeon is going to try and push for the reults sooner as he only wants to do one surgery if nessacary. If not he said he wants to deal with the cancer in hand and hold off the radiotherapy.

Such alot to get my head around again.
Thanks for getting intouch Erica it certainly does help with people going through the same storm.
joanne x

[ditzy65]

Thank you Jo, will take a look x

[ditzy65]

Hi Joanne

I've been waiting 8 weeks for my results and its driving me nuts!!!

I went to the genetics clinic with my daughters last week too discuss screening for them, as although we don't have the BRCA gene they are in the high risk cateory because of 3 generations of BC.

My genetic councellor was lovely but the woman we saw last week just kept going on about the TP53 and I don't even know the results yet!! Alot of ifs and buts...my girls are coping really well and have been such a support to me, I only wanted testing to protect them.

I got told off for googling TP53 lol but wanted to know abit more about it. Thankfully it is rare so fingers crossed for both of us.

It's great to talk to someone who has heard of this gene and who is struggling too

keep in touch

love Erica x

[Jo_BCC]

Hi ladies

I have put for you below links to some of BCC's publications you might find helpful.

http://www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-...

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/phyllodes-tumours-malignant...

Also the area of this website where breast cancer in families is discussed further:

http://www.breastcancercare.org.uk/breast-cancer-information/breast-awareness/am-i-risk/breast-cance...

http://www.breastcancercare.org.uk/news/blog/breast-cancer-families

As well as all the above, our helpline staff will be only too happy to talk to you about BC in families.

Hope this helps.

Take care,

Jo, Moderator

[madamjojohunt]

hi ladies
im being tested for tp53 gene. Its freaking the hell out of me now.
its based on my nans diagnosis.( my mums mum) she had bowel cancer then 5 years later a brain tumor.
My mum and sisters have not had or got cancer neither has my uncle or his 2 daughters. Just me. Im hoping its not a genetic fault really for the sake of my kids to.
how do you deal with this im strugiling at the moment.
i want to know so we can protect ourselfs but i dont want to at the same time.
How are you ladies dealing with it
joanne x

[ditzy65]

Hi Maria

Thank you for replying.. I have looked on the internet ad the genectic's guy gave me some info. He said it was rare but wanted to check as 3 generations having breast cancer and not having the BRCA gene seemed a big conincidence!!

I will look up phyllodes and see what it says...not always a good idea I know but as you say if you don't you don't always find out.

Sorry your consultant doesn't seem very helpful, I was very lucky with mine.

I hope your surgery goes well, will be thinking of you

Thanks again

love Erica x

[maria5]

Hello,

I think TP53 has a role in phyllodes tumours which is a rare form of breast cancer that affects 0.03% of the female population.

[maria5]

hello

I haven't been tested for anything, but was diagnosed with a phylloid tumour which is a very rare type of breast cancer that affects 0.03% of women, on March 27th 2015. From my own research (consultant at Guy's cannot waste time with rare tumours and haven't met up with my original surgeon even once, next surgery on April 29) TP53 is associated with phyllodes (not sure about other types of Breast Cancer, phyllodes is more of conjuctive/stromal/sarcoma type of thing).

Not sure this helps but hey it's a response! 

any other weirdo out there with phyllodes can you get in touch? would be fab. 

maria

[ditzy65]

Hi ladies

Has anyone been tested for the TP53 gene? I have have been cleared of having the BRCA 1 & BRCA2 and they are now testing for TP53.

I had breast cancer last year, bi lateral mastectomy because of family history...just wondered if anyone could give me any info on this

thanks

wishing you all well xxxx