Introducing myself

Hi there - I am 53, visited my GP 8 weeks ago, saw consultant a week later and had biopsy. Was told that I had cancer! Had a mastectomy 3 weeks ago and then got all the details - tumour was attached to chest wall, managed to get minimal margin on removal, had 25 lymph nodes removed of which 11 were cancerous. Also had DCIS. I have also been told it is Triple Negative - so now really scared. I am having my first chemo this Friday - just FEC-T - then radiation afterwards and then hopefully autumn 2012 a reconstruction.

I am married and have a 17yr old son, who is very scared he is going to lose his mum and is reacting very badly. My husband is being great and doing everything and I have no idea where I would be without him - my emplyers are being fantastic and paying me for my time off - though I am going to try and work a few hours when I can.

Is there anyone else on here with TNBC that can give me some positive news - thanks.

hi, I am not triple negative, but I know from being on here for a couple of months there are people around who are. They will be along and tell you their stories.There are people having chemo too, so there is lots of information about side effects and help with side effects of radiation.

there are also people on here with teenage children who are scared for their parents sakes. What would you think about your son posting on here? or is it your own private place? Once he heard from someone else that there is treatment and that this news does not mean automatically that he is going to loose his mum he might be able to handle things better, there are men and sons posting, even if I have never seen someone that young in the couple of months I have been here.

Welcome to the forum, ask any silly question at all, everybody is here to help.

Hi Janesi
So glad youve found a place to get support and advice-I know I couldnt have managed since my diagnosis (DX) without this place.Im not TN, but there are lots of ladies here who Im sure will be along to help you. I am 52,DX Oct 2009, had mastectomy, no chemo etc and recently had my TRAM reconstruction which has gone great. Im on Tamoxifen and doing really well. I too have a teenage son who was very frightened by my news as my mum had only just died of cancer. I understand how the family feels but there are lots of people on here who are doing well, so, although we are all so different in the details,there is hope too.
There are some excellent publications from BCC that might help you all, so give them a ring.
Best of luck
Cathie xx

Sad that you’re joining us on this journey, but welcome from me! Many wise people here. I think there’s a separate Triple Negative bit of the forum which has some good ideas in it, too.

I’m HER2+ rather than Triple Negative, but both types shares the same sort of aggressiveness. I also have a teenage son who’d also like me to still be here. Me too :-S

I know triple negative usually responds well to chemotherapy, and ‘runs out of steam’ after the first three or four years, whereas other types have a higher risk of returning for longer than that. So it’s not all bad news. Even in your sort of situation I think the odds tend to be at least 80% of having a good result with the latest stuff, so don’t panic.

They’ll want to splat it with everything they’ve got. Get them to look at Cyberknife radiotherapy as well - amazing robotic thingywotsit that can zap things really accurately and improves the odds a lot from the research so far.
Ask anything - someone will know…

Ann x (most of the way through chemo, surgery still ahead of me)

Thank you guys - life is like a rollercoaster right now with the only bit of good news being that my bone scan was clear! I am having the CT scan on Wednesday along with an echo cardio gram and then my chat with the chemo nurses prior to starting the treatment.

Could someone post a link to the triple negative bit as have not found it yet.

My son has had counselling at college and felt it helped him - I did pass him a website, but not sure he would want to post on here!

Hi Janesi
I’m a triple neg person and have found lots of useful threads on this website - just find the link on the left hand side of the page and you’ll see lots of different threads.

As already stated TN tends to respond better to chemo, we don’t have to take hormone treatments (which have their own set of side effects) and recurrence once you’re passed the 4-5 year mark is less likely.

I was only DX in March this year but because it had already spread I went straight to chemo without any surgery. I’ve posted on various threads - sometimes happy, sometimes miserable - it just depends which way the winds blowing! But one way or the other I’ve found this site an absolute godsend.

Be kind to yourself

hi janesi another tnbc here , loads of support and info on this site such great ladies xxx

Hi there another TN lady here, I know it can seem very scarey being TN as we cant be treated with the hormone treatments, however there are ALOT of us nowadays that do come through this & the good news is if you get to 3 years with no reccurance the % of reccurance drops conciderably 5-6 years & they class it as ‘cured’ ? whereas this is not so for others with hormone receptive BC

There is a lovely lady called Lucy who is also a BCN in the genetic field & her knowledge has been a great help to many of us Im sure she will post sometime too & confirm what I have said above

Wishing you all the best with your treatment keep posting
Mekala x

Was this the link you were looking for ?

Hi another TN here I am having chemo at the moment 4 EPI and 4 CMF just 2 CMF to go and 15 rads had 9 so far. As said before the chemo does seem to be very effective in TN.
Good Luck with your treatment and do use these forums for support as you go through you will find them invaluable.