Breast Cancer Now Forum

Hiya yes al my treatment has been on the NHS, I was lucky I had a genetic counsellor who wouldn't give up lol Hope you get your results soon, once you know what it is, then you can deal with it. take care xx ... View more

Hi KC how are you doing? hoping your arm is getting better and you are coping with any problems love erica xx ... View more

Morning ladies   Had my results back, not TP53 but CHEK2, apparently like TP53 but rarer, took so long for results as they were testing for this too. My genetic councellor has been very thorough which is good. Waiting to go and see a consultant at Oxford now to arrange any tests. My daughters will also decide whether they want testing and what can be done for them. At least this explains the link in the family to BC..now i know what it is know they will keep an eye on things. Wishing you ladies both the best, keep in touch love erica xx ... View more

Hiya Francine I had a double mastectomy last year  before i was tested for the BRCA gene. Went to the genetic clinic at Oxford in Feb, the genectic councellor has been really good and phoned 2 weeks ago to say there had been a technical fault, hopefully hear this week. He thinks it is a big coincidence for 3 generations to have BC and as the BRCA was clear he is being thorough...I just hope that is all it is. As mums i think our 1st thoughts are for our daughters...the need to protect. Thanks for the info, i did know a little, very complicated take care xx ... View more

Hi Michele and Francine It was really interesting to read your posts about gene testing. I have been tested for the BRCA gene as my mum died of BC at 27 and my nana had BC at 60. I had BC last year at 48 but had been referred and refused genetic testing prior to this...does that make sense!! Anyway my test was clear..great as i have 2 daughters, your natural reaction is to protect them. As they are both still in the high risk category they can have scans at 30 ( 1 daughter is 32 the other 27) They are now testing for a gene TP53 have either of you heard of this?? I have been waiting 12 weeks now for my results and starting to get really fed up. I hope you both get the resuts/treatment that you need love Erica xx ... View more

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 ... View more

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 ... View more

Thank you Jo, will take a look x ... View more

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   ... View more

Hi KC Yes it does help to talk, especially with ladies who have been through the same...some people just don't get it do they!! I havve had a range of comments said to me and if I didn't laugh about them I would cry lol. My BC nurse said she was going to refer me to a councellor at the hospital as I went through a rough phase, but that was 8 weeks ago and I haven't heard a thing...good job I'm feeling better in myself now!!! I hope your follow up teatment has been good..it's abit of a shock to the system to have to go it alone after such a busy time before. Have a lovely weekend, I work in a school so I'm on half term now, going to sleep for a week lol take care xx ... View more

Hi KC keep up the physio and I'm sure it will get better soon, not very nice for you x how are you coping with life after the C word?? I'm finding it all abit up and down, waiting for results sure doesn't help!! Chin up xx ... View more

Hi BooLem I had a double mastectomy with immeadiate recon as i didnt need any radiotheraphy. I had implants, which because i went smaller didn't need the expanders 1st. To be honest at 1st i hated them and it is taking me along time to get used to them, i also thought i might have preferred not to have any but i am glad now that i have just little ones. I have spoken to lots of ladies who have had the tummy op and they are all happy with their new boobs, and their tummies but you have to do what you decide is best for you. Talk to your breast care nurse and consultant about the different choices there are for you Hope you get some reassurance take care, keep us updated love Erica xx ... View more

Hi KC how are you doing? any change with your arm? still waiting for my results!!!! take care xx ... View more

Hi AJ Everything you say is what most ladies feel and I can relate completely to you. You're not mad, or paranoid...just coming to terms with what has happened to your body. I had a double mastectomy last October with recon and thankfully I havent needed chemo or radiotherapy... i too am on Tamoxifen and apart from hot flushes I think i'm ok. I think it is after all the surgeries are done and you don't have that to focus on that you start to think more about it all. I know what to say to people, I know what I should be doing...but I still worry that IT will come back. My BC nurse was going to refer me to a councellor but the appointment never came!!! Having good friends to talk to does help and reading ladies comments here does too. I hope you manage to move on,  talk to your BC nurse for advice, Take care and keep in touch love Erica x ... View more

It's so good to read your posts and know I'm not the only one feeling like this. I feel abandoned after all my treatment,(double mx with recon, no radio or chemotherapy) I had it easy compared to some but that doesn't stop me worrying that it will come back..or is still here somewhere. People see me at work with that fake smile plastered on and presume all ok...'well you're over cancer now aren't you' was a comment the other day... I don't know if it is the menopause or the tamoxifen but by golly those sweats are not fun!!! xx ... View more

Hi nextstep I saw a clip for it but didn't catch what it was called...I don't think it has been on yet. 2 minds whether to watch it or not..gonna be a tear jerker for sure.. I cry at the drop of a hat at the moment!! love Erica xx   ... View more

Hi June I have been tested for the BRCA gene as my mum and nan both had breast cancer but I don't have it. Being tested for another gene and waiting results..3 generations of BC is  a big coincidence. Just want my 2 daughters to be protected. I had 2 tumours in one breast and they removed both to reduce risk.   Yes I was told 10 years too, I think i will put up with the side effects if it does its job.   Take care nice chatting Erica xx   ... View more

Hi Jo I'm completely the same, how long have you been on Tamoxifen? I've been taking it since last October and am gradually getting more sleep, maybe things will get better with time Sorry I haven't been much help Hope you get some much needed rest soon Erica xx   ... View more

Thanks June Yep i have the flushes too, wasn't sure if they was an age thing..I'm 49. My mum died from breast cancer when she was 27 and it upset me so much today to hear about Rio's wife..I'm just so lucky and grateful to be here Take care Erica xx ... View more

I completely agree Rose and it feels good to hear someone else say it too, I had a double mastectomy but others just see it as a free boob job!!!! I wish you well xx ... View more