I thin i undrestand, i have a grade 3 stage 2 type with one out of 8 nodes involved apparantly. And its triple negative, but he didn’t tell me that, i only found out by looking it up at home and it has devastated me as i feel like i will be forever waiting for it to return and apparantly its more likely to return distant than local which is ahuge fear of mine obviously. Before i came home i went for champagne and a nice meal with husband and baby as i was so pleased it hadn’t spread to further lymph nodes a si had a sentinel node removal and quadrantectomy in jan and then further surgery in feb to remove more nodes so when he told me they were clear i nearly cried with joy and he mentioned it was HER neg and ER neg and PR neg but that meant nothing to me as he seemed so pleased that the HER wa neg as he said it was less agressive but noone mentioned triple neg to me and when i got home i nearly crumbled and rang my breast care nurse and asked her outright and she said it was. To think i celebrated, for that small hour at that restaurant i felt so happy and now i don’t know how i am going to wake up tomorrow and put my happy face on and care for the kids all day. I know the above posts and positive things in it but the facts seem so daunting and negative…
Lola belle there will be others on here (JaneRA-for instance) who will be able to give you clear and factual information about trip neg, without terrorising you . I think when you root around on the internet or disect your pathology report it can be terrifying . Grade 3 is very common, particularly in young women -there are many many of us here who are grade 3, and yes, whilst it is obviously less frightening to have no node involvement, I think I’m right in saying 1-3 nodes is the next best place to be ( though as far as I’m concerned there is nothing "good, or “best” about cancer).Difficult to believe I know, but the fear(which remains with us all) does become more managable in time.
Cherry
Dear lolabelle it honestly isnt all bad.My cousin was dx er-&pr- 6years ago[no herceptin testing then]she is absolutely fine,no more trouble at all.Herceptin brings theHer2+ people back to a level playing field with the rest though I believe it can do a lot for Her2+secs.There are many different types of —bc.Some positivex3 people get mets sadly and some negx3 people dont.Deep breaths my love its such early days for you and you will be offered chemo which is often very effective for us.There is a lot of focus on triple neg just now and several drug trials.Take care of yourself and you were right to celebrate!love horacexx
Lolabelle, I was diagnosed triple neg,grade 3 with node involvement over 4 years ago and I’m still cancer free and feeling fine.There are quite a few of us on this site - some a lot further down the line than me! It’s not all doom and gloom- Chemo does tend to work better on our sort of tumour! You take good care of yourself, get through your treatment and get on with the rest of your life!
Love Josie xx
Hi lolabelle
I’m glad to see that you are finding this thread helpful. It’s not at all unusual to worry about the future in your situation, as I’m sure you realise. As well as the support you are getting from the forums you might want to phone our helpline and talk through your fears and concerns in more detail.
If you feel you would like to talk to someone in confidence the number to call is 0808 800 6000 and the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
I hope this is of some help to you.
Kind regards
Sam
BCC Facilitator
Thank you all so very much, I feel mariginally better today but there seems to be the most horrendous info about it in the press/web etc that it is so hard to keep on being positive but the kids are a onic and after a restless night and waking up with a face like the puffa fish i was already having to dispose of poo’s in tupperwares (thank to my 3 yr olds v.bad toilet training) and my 9 months old conjuctivitus so it made me soon forget my troubles at least even for an hour or so. I still feel weak and exhausted and very angry (long family history not told to me until after my diagnosis) and i think this has finally brought home to me just how important it is to stay positive as i couldn’t live for long like the way i felt yesterday as it was piure hell, a kind of primal screaming/crying/sobbing that made me so physically exxhausted that i woke up feeling worn out even this morning so onwards and upwards again but i still don’t really understand this triple negative thing. The internet made me scared and on here it reassures me and i definitely trust here more but my consultant actually seemed to think it was good news and said 'good news about the receptor test which is what made me head to the local restauarant for fillet steak and a Kir Royal! Still I guess a fillet steak and a Kir royal is desreved regardless of the results, lifes not been too good recently! It amazes me where I seem to find the strengthh to cope with every hurdle, when i use dto read about women with cancer in magazines i’d find it hard to read let alone imagine having it so young but I guess we have no other option but to cope do we?!
Must dash as I smell something so its either a nappy or another attempt at my daughters toilet training that I need to look into!
Dear lolabelle
Hope you’ve read my earlier comments and i really feel for you as i felt exactly the same 3 years ago when I was diagnosed. Doctor had to prescribe Diazepam as I couldnt sleep, cried all day etc etc…
If I can offer any advice it would be DONT look for answers on the internet! You’ll get no answers and make yourself feel 10 times worse - I know because I did! I was obsessed with looking at all the negatives on the internet and got myself so worked up reading all the “bad” articles. My 26 year old son would go mad as I used to print out all this and force them to read as well!! It was awful really .
Forget the newspaper articles on triple negative - they know nothing!
DO listen however to your Oncologist and breast care nurses. Believe me they are the best ones to talk to, and you must talk to someone to keep you on an even keel. Try and understand that triple negative just means another type of breast cancer, no more or no less worrying than any other type of cancer.
Please dont wear yourself out crying, Try and keep positive, life does get better believe me. I personally feel that my cancer was a long time ago now and I just look forward to being around for at least another 20 years! (I’m 51 in april.)
Life is very much back to normal for me now.
Keep going out for those lovely meals and celebrate the fact that you are going to face the future
with a POSITIVE outlook because you’ll get through it all and will look back in 3 years like me and realise there was nothing to worry about. You’ll have the best treatment and care available.
I wish I could reassure you more but I know this is a traumatic time. But I have 2 friends who are triple neg, one is now 5 years on and one is 7 years on!!
Best of luck!
Love Bev xx
Dear Lolabelle
I was diagnosed last August and found out about half way through treatment that I was triple negative and was in almost exactly the same state as you! Minus the Kir Royale…I was so shocked by what I read on the internet and also by the fact I couldn’t get any straight answers either from my oncologist or the consultant who just said ‘We have chemo, that is our tool, get through this, stay positive, go home and look after your children and get on with your life!’ I felt so angry and patronised. But here I am, nearly at the end of rads - seeing a light at the end of the tunnel and realising that only a short time ago they had no idea what any tumours were. I spoke to a bcc peer counsellor who was a lovely lady who had a very similar tumour to mine 10 years ago when her children were the same age as mine - and is still doing fine. She even said that in some ways it had been a real turning point in her life as she stopped putting off things she wanted to do and has accomplished more in the last 10 years than she ever imagined. She only knew she was ‘hormone negative’ because there were no further tests available at the time. Anyway thankfully I appear to have missed all the horrible press about this - I have avoided a lot of mags and the newspaper over the last few months for this very reason. I am just about at the end of treatment and just as scared and apprehensive as everyone else about the future but I suppose we should be grateful that we will also not have to suffer the side effects of tamoxifen etc…
Anyway - so glad that I am not alone in this - was feeling as if I was the only one…
Lots of love and keep drinking the champagne - cures everything!
Mary xx