Isn’t it strange how you feel when someone passes from this site even though you may never of met each other. Is it the connection that we all have in one way or another does it make you feel that you are part of one big family because it does me. The way you all support each other and look out for others, and there is no bickering like there is in families. It’s just calm and comforting on this forum even though it can be life threatening and scary the illness that everyone has. Shelley passed and i was totally shocked as i had come to the conclusion she was getting better as she was such a fighter such a lovely young woman, but after the shock i looked through the site and felt comfort and warmth. How mad is that? That’s what has made me write this.
I am so grateful for people like you all as your a great comfort to people like me who is always worrying about one thing or another, i wish i could be like you all when my sister talks to me about her illness infact i would like her to join the forum as i am 100% sure you would do her more good than her doctor…who seems to make her more and more depressed even though we know he is only doing his job and answering her truthfully…sorry for waffling on but i just felt i needed to
Yes Maryelle we do get attached to our cyber friends. I’ve been using these forums since 2004 and so many friends…some who I met in person…are now dead. But also I have friends who are probably going to be OK, freinds who are OK after breast cancer, freinds from the early days of arimidex and herceptin…mainly most don’t post any more but its good to know that our community is diverse, that some die but many live.
Hi Jane, I first posted on here when I was diagnosed TNBC in April 2005 just after my 48th birthday and was greatly encouraged by your comments and regularly logged on for the 2 years following.
I was diagnosed with a grade 3 tumour 3cm with no node involvement but absolutely worried sick reading about triple negs!
But as you rightly say, 4 years on and still healthy, I don’t visit the site much anymore as, although I’ll never forget what i went through, you have to move on. But I come on from time to time to se how the “old faces” are doing!
I was discharged from clinic check ups last year (after 3 years…so thats encouraging) and now only attend for my mammograms annually (just had one this week in fact).
I have 2 friends who were also triple negs…one is now 6 years on, the other 9 years!
I was so sorry to hear about your recurrences and am amazed at how strong you are with all the treatment you have to endure.
I wish you all the very best and send you a big hug!
Bev xxx
Hi Bev
As someone who is still fairly new to the BC world (diagnosed in Mar 09) and still trying not to be worried sick about being triple negative, I just wanted to say how encouraging it is to read posts like yours about people who are doing well years later. I hope good health continues for you and your friends. It makes me believe it could happen for me too.
hi joss,
I had grade 3, triple neg back in 2005, Masectomy, chemo (fec), and radio. I know its scary but im still here camping with my 2 kids and dog, running race for life and salsa dancing every monday! and when i was told that in time i would be able to do all this i did not believe anyone but hey here i am bursting with energy !! also when I get to 5 years post op the chances go back to normal about percentage of developing bc. so roll on 5 years. Also my mum, and 2 aunties also had bc and they are still playing golf twice a week at 70+,
keep going girl
Julie
I was too scared to read any of the triple neg posts until now & I’m glad I plucked up the courage!!
Thanks to you brave ladies who have posted with your stories…they’ve brought a tear to my eye & a given me hope! It’s so nice to hear from women who are where I want to be!! I want to be able to post on here in 5 years time & say…‘Look at me, 5 years on & still going strong’! A bit cheesy I know! LOL
I was diagnosed with triple neg back in july (45mm grade 3, 17/30 nodes). My whole world crashed around my ears once again when I was told that it was triple neg!
I’m only 35 & have 3 great young kids to live for! I look at my 2 year old daughter & pray that I see her growing up. Not having the backup plan of hormone therapy after rads scares the hell out of me!!
Thanks again for your posts & Good Luck for the future
Hi everyone.
I don’t know what I am doing here, a bit of trial and error I think, or whether this will even show on your screens, but I thought I would give it a go!
I was diagnosed with triple neg bc in July, have had an op. (16 out of 17 nodes affected) and have just been told there is no evidence of further spread. Crikes, am I relieved!! I am 42 and have 2 boys who I want to see grow up.
Anyway, I had my first chemo session last week and lost 3/4 stone overnight as I was so ill. I’m on the mend now though and have even cleaned my fridge out today!! Must be bored…
I’d love to chat to anyone who’s got some time to spare. I think I have done a profile - JP?
I too was dx in 2006 with grade 2 trip neg 2cm IDC node negative after sampling.I had wle 4xFEC4xTaxotere and 15 rads.So far so good-it will be exactly 3 yrs from my dx on Oct 2nd.I have a cousin who was dx in 2001 with tn and she is absolutely fine.She had fewer se’s from her chemo[E-CMF]and says she never thinks about it now.I know someone on another forum who is 9 yrs from dx with no recurrence.It does happen honestly.jp there is a live chat session on here on Thursday evening at 9pm till 10-you might enjoy that.There is a link on the page where you log in.
Love Valxx
hi all
hope you don`t mind me joining in, but to i am triple neg, grade 3 aggressive, 3/20 nodes involved, i have 2 lovely yound boys who i want to see grow up, just had my lasy chemo yesterday, and am feeling abit elated that its done , but also abit apprahensive, as i will have 5 wks of rads then thats it, people keep saying great nearly at the end of the treatment, but i think to myself, and yes then the worry of it coming back being more in the first 3 years with triple neg,they dont understand unless they have been through it,some good news is that my sister is 6 years on from triple neg bc and looks and feels great, so i have to hold on to that, not always easy though,
alot of you on here do give me hope though thanks julie m x
I am so grateful that we ‘triple negatives’ have our own thread. It is one year this month since my diagnosis and like many others I sometimes feel so vunerable having no ‘safety net’ however reading the positive stories on here really helps. I have my first mammogram in 3 weeks and you can imagine how anxious I am, it’s not the actual mammogram but the waiting for results,again. Wouldn’t you think that they would have some system where previous BC patients could get results quicker?
hi
yes i think the waiting around is awful, and you would think they would have a better system,
brenda6 i hope your mammogram goes find,how long was it before you went back to work,
i`m hoping to get back after xmas, as i work in a childrens nursery,have got to have meeting with occupatinal health, as need to know how much i can do with my arm, as my sister still has some trouble after 6 years
julie m x
i think result wise i normally get my results about 3-4 weeks after my mammo… this year i had my mammo on thurs afternoon and had a call on the monday am to come for a repeat the next thurs… so was only really 2 working days which i though was pretty quick… although i never for one minute thought id be recalled as id been reassured by the nurses and docs i was fine.
I always pay to have mammo privately and then get results immediately[within an hour]I book private appt with my surgeon at the same time and it comes to about £160 all together.It is worth every penny to me.I have my 3 yr one on Nov4th and am already terrified.To me this is the big one-3 years has seemed like a place to aspire to and now it is about here.[Oct 2nd 3yrs since dx]
Julie, I have decided not to return to work as I had endometrial cancer 4 years ago, went back to a stressful job then was diagnosed with BC last Sept. I have always worked but feel it’s time to make the most of every day and do the things I never made time for. I still have days when my arm bothers me. I am also currently being tested for BRCA 1/2 so find the waiting for that result hard as well. I think it does depend on each person individually re going back to work. I made sure that occ health were involved every step of the way when I went back the last time. Thanks for your good wishes and hope all goes well for you.
Val,congratulations on reaching almost 3 years!I never thought about going private as when I was first diagnosed I enquired about private treatment and my BC nurse advised me against it, I must say my surgeon and onc have been great. I may mention this to her.Good Luck.