Moondog, I have only just finished treatment for primary bc and do read the secondaries threads, I agree with you completely, the reason I read the threads are because of everything you’ve just said, however, I also know how they can scare people witless, I think that’s probably all Superfit123 meant and i’m sure she didn’t mean to offend anyone x
Hi
My name is Gail and I was diagnosed with TNBC in July 2008 aged 44. First I had 6 pulses of chemo followed by node removal wle and 30 radiotherapy sessions and im still going strong. Just had a clear mammo and thats me nearly 3 1/2 yrs since all treatment etc finished. Every day is a bonus andItry to think positively though I cant deny I still have doubting days even now and I defy anyone who says thy dont some where along the line. Everybody keep your heads held high and your chins up.
I read the secondary threads regularly and am in awe at the courage and love shown by so many who are facing up to the thing we all fear and doing it with dignity while finding time to support the rest of us.
Last Friday [6th] I reached the 6th anniversary of my tn dx [2cm grade 2 node negative]. I had wle, 4xfec 4xtax and 15 rads. I will never stop worrying but am hopeful now. My annual appt with surgeon is tomorrow.
I’m 5 years post treatment this month! Invasive ductal, 5/11 nodes, Grade 3, mast LD recon, FECX and rads. Onc gave me 50% chance of being well in 5 years. I’m still here and I’m well (with everything crossed).
Just wanted to add some words of encouragement to all newly diagnosed Triple Negatives. I was diagnosed Nov 2009 after many tests as they could not find a primary, just a malignant lymph node. Final diagnosis was grade 2 invasive DCIS with 2/9 lymph nodes affected. They have called mine triple negative although my ER was 7/8 in DCIS so struggle to really understand. Had partial mastectomy, lymph node clearance, 3 FEC, 3 Taxotere and 3 weeks radiotherapy plus 4 booster sessions. Am coming up to 3 years now so would like to pass on this good news as I was convinced I would not be here now. Still confess to worrying too much about it all but try to do things that I feel might help, ie exercise, healthy eating, not drink too much. Not easy though. BUT so pleased there is much more information on here now. When I was first diagnosed I really struggled to find information on triple negative and that made everything so much more stressful. So thank goodness for sites like this. Good luck everybody.
It’s 10yrs tomorrow to the day when I went to my GP after discovering a lump in my breast. I was dx with a grade 3 TN with spread to nodes and so much vascular invasion they didn’t expect me to get through chemo without it returning. I was given a 35% chance of 5yr surivival and a 45% of 10 yrs…I think I’ve just done it!
may my luck rub off on you all,
Josie xx
hi all ive just been dx with stage 3 triple neg, waiting to see onc now about chemo and rads, scared but got to be positive. would like some advice for having chemo or rads please.
Brilliant news Josie !!! well done !!! theres hope for me yet !
Wendy x
Just to let you TN ladies know , that a lady who became a friend, who was diagnosed with me ( I am ER+ but she was TN) , had a 7cm, Grade 3 tumour , 14 postive nodes , is 9 years NED, so never, never give up hope.
Of course there’s hope, thousands of woman survive this every single year in the uk and many of them are triple negative. I have to say when I was diagnosed with TN I had no idea what it really meant, thankfully or maybe not thankfully I found out more info on this site abut percentages and figures, something that really upset me for a really long time and I found hard to deal with. I’m still finding hard to deal with to be honest and find even the title of this thread ‘any TN survivors out there?’ Insulting as it suggests there are hardly any. Lots of the survivors are out there surviving and living their lives, that’s often the difficulty of forums like this as its probably more bias towards under current treatment or those with seconardiaries not those just living their lives. i don’t mind to rant sorry I just find it hard enough without reading doom and gloom. Maybe we should start a new thread, something happier and more cheerful 
Jellymould, I was also stage 3 TN - 5cm tumour, and had chemo before surgery, then rads. Had all three because at the moment there’s no other treatment for TN, like Herceptin, Avastin, Tamoxifen etc, so was happy to have everything offered at this stage. Hope your onc was helpful and explained everything clearly.
Sara x
I hope my comment hasn’t offended, it certainly was not intended to and was very much written to try to reassure and support if anything. I just rememember when I was diagnosed how reassuring it was to read stories about long term "survivors ", ( I don’t like that lable myself but can’t think of an alternative) and how frightened I was (still am) by some things I read - so any good news, however small, lifted my spirits.
Hey cherryred, no sorry I wasn’t having a go at you, it’s lovely to hear stories from anyone doing well and living their lives, it was more a general comment about this being hard enough without constantly feeling like doom and gloom of this being the worst possible scenario when it’s not. I like to hear stories of people doing well being healthy and happy as that what hopefully I will be too soon enough
I like to see the good news stories. I just wish it could be that way for everyone.
Hi Moondog , I have to confess I’ve never looked on the secondaries threads, partly fear (it’s such a fickle disease when you see people like yourself who had no node involvement yet are now having to cope with secondaries but then people like Josyemarie who has managed to get 10 years cancer free despite a very poor prognosis) and partly because I felt like I would be intruding - if you can understand what I mean. I’m sorry you feel marginalised. I shall take the plunge and pop in for some inspiration.
Hi Laura64 - I accidentally grew some marijuana a couple of years (amongst the opium poppies!). If only I’d known then what I know now I could have kept it growing for future use!! Must have been from the wild bird seed. It was quite well grown up before I realised what it was. There were probably some nicely ‘chilled’ composting worms that summer. 
Lauralable…I am sorry if you found the title of this thread offensive, it was not created for that intention. When I was diagnosed in march, I knew nothing about tn and knew nobody, e hospitai I am being treated in could not give me any figures, further info or any other people to talk to. The intention of this threat was to give me and probably many others finding it hard to find positive news regarding tn (media coverage on this subject is unfortunately not very encouraging). Personally I have found the responses very encouraging and positive, it has given me faith.
I’m sorry I’m probably being too sensitive, just trying to stay positive (if realistic!) and is great to hear of people doing well.
Hi,
I am stage 4 TNBC metasised to my lungs. i have been told I have two years to live. If you belive what they tell you you may as well sit at home and mope. I don;t for one minute think that this is incurable. It is scary and all i can say is that there will always be good and bad days. Since my most recent diagnosis i ahve completely cahnged my life; I have taken control and not letting my life be in the hands of others completely. I am not saying not to have surgery and chemo- do it’s all very important and I hope it works for you all. It hasn’t worked for me yet but I have changed my diet, started taking supplements, exercise daily, do yoga, meditation, acupunture, reflexology and take medicianl mushrooms. I try to read things that are positive and do visualisations as I belive that the ind has to let go too. I have set up my own website that breaks down what I am doing and I hope that other people will go on there and start converstions and give their feedback and their research. I am currently going to germany for dendritic cell treatment as well as seeing if I should go back onto chemo. I write a blog every day too. I would love to hear your thoughts and wish everyone luck.
Everyones situation is different but I do believe that you have listen to your intuition and know that you are doing the best you possibly can in the time given.
My website and blog are at [link removed by moderator]
I’ll still be here in 4, 6, 8, 10 years. I know it.
Love n Light.
XX
Moondog and anyone else I have inadvertently upset, I do send my humble apologies. The reason I said ‘don’t look on the secondaries threads’ is because I have found it very hard to come to terms with having cancer , let alone TN. The secondaries threads simply made me more scared and sent my mind into freefall. Which is why I suggested that people looking for survival stories didn’t look there.
I am SO sorry to hear about TN people who now have secondaries and I agree that everyone wants only to hear the success and ‘moving on’ stories. I just hope and pray that one day very soon the doctors and researchers will understand the complexities of TN better and that there will be more and varied treatments for this particularly nasty form of breast cancer.
And Moondog, I send you my very best wishes and prayers. I am sorry if you felt I marginalised your situation.
Hi darling
I’m over 3 years in. BRCA1 and still here sweetie…
Hi, I have secondaries in the liver and bones. Basic research will show that taking vitamin D3 will keep bones strong. I have been using it with great success for 10 months now and the huge lytic lesion in my hip has healed, much to the surprise of my oncologist. There is also strong clinical evidence that it can halt cancer in its tracks although it is not a cure. It is also useful in boosting the immune system. It is currently being used alongside chemotherapy in 2 London hospitals. My liver tumour is static.
I have also been taking oral chemo capecitabine and zometa for 2 years now and im having a months break. Keeping the weight off, cutting out sugar and sugary foods and fizzy drinks together with exercise and a healthy diet will ensure you stay in tip top condition.
At 61yrs, I ride my horse and regularly walk 8-10 miles with my walking club. I enjoy gardening and have just decorated my staircase.
Forget about being ill, concentrate on living, don’t sit around worrying, enjoy family and friends, do those thing that you enjoy. Get a pet if you dont already have one. A positive attitude helps keep you going. Ditch those folks who are negative and say things like “oh you poor thing you’re doing too much” and " you should rest more". Exercising within your limits is actually good for you and will help your lymph system to move…you will become stronger for it.
All you ladies check out this website www.cancerActive.org and google the Dr Johanna Budwig organisation where there is lots of info and free downloadable books on every subject in connection to cancer.
best wishes…remember stress is no good for the soul…and you are what you eat…do the research and you will find more than you ever thought possible… X