I’m not eligible for testing and am over 12 mths post treatment now so no good for me but absolutely brilliant that there are trials and hope out there!
I had a 12 mths check up recently and my doctor did say that the first 2-3 years are critical for our special club of tnbc and after that the risk of recurrence dramatically drops. She was very reassuring.
It’s difficult for us all but you just have to live your life and enjoy it because who knows what is round the corner for any of us.
Xx
I didn’t watch it either Pam . Every time I turn the tv on or open a magazine there is something about it …when you are going through it yourself I do t think it’s helpful. Going for my op Tom hope they still do it with my chest infection. After that I’m going to ask for a scan on my painful shoulder … It seems never ending xx
I couldn’t watch it either, was close to tears just knowing it was on. Far too close to home.
Hi please excuse me writing a comment I’m new to this site and don’t really know how to make a comment. I have TNBC state 3, 5 lymph nodes involved, have been reading up on prognosis and have frightened myself so much, have been terrified. I had a lumpectomy and total node clearance, ct and bone scans were clear, my surgeon said cancer has gone and having chemo and radiotherapy as a precaution. But reading the net has scared me so much, I’m due to have my 3rd fec Friday then 3 tax then 20 sessions of radiotherapy, xx
Hello everyone I’m new to this I have TNBC stage 3 and have been finding it difficult to function because of the worry about it I have read on the net, be nice to speak to others in the same position as me xxx
As far as I understand Zee, taxol is very effective for TNBC when combined with EC or FEC. It’s is very confusing as everyone gets slightly different treatment. I had 3 x EC and then 9 x weekly paclitaxol. You could always ask your oncologist again to put your mind at rest. I had bilateral mastectomies pre chemo too but no rads
Hi Suzanne and welcome to the BCC forums
Along with the support and shared experiences you have found here, our helpliners are on hand with practical and emotional support so please feel free to call on 0808 800 6000 and talk any concerns or queries through. Lines are open 9-5 weekdays and 10-2 Saturdays .
I am posting a link to further support and information from BCC on the treatments area of this site which I hope you will find helpful:
breastcancercare.org.uk/treatment
Take care
Lucy BCC
Thank u have been a mess, been so positive up until I realised it was triple negative.
Is anyone else having trouble sleeping, I haven’t had an undisturbed nights sleep in months, waking at least 3 times a night, any suggestions to help with this x
Aww I wish I could switch off and not have this constant feeling in the pit of my stomach, it’s awful I think I’m gonna drive myself insane with all this worrying x
Woke up feeling worse today this feeling is awful isn’t it, worried out of my mind x
I was diagnosed in 2010 with TNBC stage 3, and am here to telll the tale despite not being able to have my full chemo treatment! I only had 2 full FEC then 4 reduced doses of FEC and no Taxotere as I should have had. 23 radiotherapy sessions and despite the problems I have now been told I don’t need further follow up because Wales only do follow up for 5 years after diagnosis! However I am well, so perhaps I will stay well forever, 3 cheers!
Pam how do u get through the day cos at the moment I can’t drag myself out of bed, I’m crying all the time, girls please give me some ideas to help with this. I keep telling myself they have taken all the cancer away, my scans were clear but the thought of it returning is driving me insane, I’m a mess at the moment x
Lucy will my comments show today as they don’t seem to be, thanks x
Hi zee66,
The only chemo I was given was fec - no-one ever mentioned taxotere. Anyway, I’ve been clear ever since - and that was 13 years ago.
Best of luck.
Bel x
Hi thank u for that comment, did u have node involvement too x
I was diganosed grade 3, triple negative, stage 1 in Dec 2007 and had all my treatment in 2008. I had a lumpectomy and the sentinel node test which showed it hadn’t spread, 8 rounds of chemo every 2 weeks and then radiotherapy. I was 36 and my son had his third birthday the day my chemo started. I also had to consider harvesting my eggs as we were still trying for a second baby, but because we had one child already and the cost of fertility treatment so high, we decided to hedge our bets and instead I had a separate drug during chemo that was intended to “protect” my eggs, Neulasta. Combined with the effects of the chemo drugs Cyclophosphamide, Epirubicin, Paxitaxel and Zoladex, I had the full enforced effect of menopause. I can’t say how that differs from not taking Neulasta as well, but hot flushes and mood swings were interesting! I am now nearly 7 years on from my first diagnosis, 43 years old but without any additions to the family and now perimenopausal so the roller coaster of hot flushes and mood swings is back!
Finding others who were triple negative is very comforting as all the other ladies I have met had no idea what triple neg meant and were confused as to why Herceptin or Tamoxifen were not things on my list of drugs. On top of that my Oncologist never told me at the time I was triple neg, I actually had to ask after reading my notes and searching online, he thought the truth would be too scary in the early weeks.
Good luck to everyone who is going through treatment, hang in there, there is a light at the end of the tunnel xx
Hello ladies,
Yesterday was 13 years to the day that I was diagnosed with triple neg BC. In fact it was the first year I didn’t even notice that the “big day” had come round again. Oh how I remember initially counting the months, then the years…And of course I will never ever forget Monday May 13th 2002 - those three words “you have cancer” and, aged 31, life as I knew it instantly collapsed. Forever I feared, at the time. If someone had told me back then that 13 years on I’d be fine, and would have gone on experience many lovely things in my life since the cancer I’d have found it hard to believe them. But it can be done and if I can do it so can all of you.
Best of luck to everyone.
Bel x
So happy for you bel and thank you so much for sharing and giving us hope xxxx
Hi Pam
Not at the stage of going back to work still got rads etc to do. Just wanted to say well done for getting through all your treatment and starting to get your life back xxx
Hope all other ladies doing ok. Xx