So frequently when people are describing their diagnosis they add … but fortunately no nodes involved. This scares me because I had 9/10 nodes which tested positive. I know its not the best diagnosis but is it really so bad to have a large proportion of nodes affected? I was diagnosed last June. Had lumpectomy and total axillary clearance followed by 3 Fec and 3 Tax and radiotherapy - last treatment February. I feel really well and refuse to believe that I am not. However I would be immensely encouraged to hear from other survivors of a similar diagnosis. Of course if no one replies I will be really scared but then again it might just make me even more determined to survive!
From a purely selfish perspective, the “no nodes” comment meant “no TAX”!!! I’ve heard it’s gruesome to go through, so I was delighted that I escaped that particular torture.
People will be able to come up with lots of stories about Person A who had Grade 1 no nodes and got secondaries and died within a couple of years and Person B who had Grade 3 and nodes and survived to die aged 98 of a heart attack. This disease really is such a bummer and messes with our minds almost as much as our bodies. Please don’t fret too much about the nodes thing. (I have the same thing about HER2+ coming back really often, but I just shove my fingers in my ears and say “la la la I can’t hear you”.)
Hi, I finished treatment in April and am on Tamoxifen. I had 22 out of 24 nodes affected - scary if you think about it too much.
You seem to be doing well so just keep positive!
Lesley
I had loads of positive nodes and came to this site for support. I got plenty as you can see if you follow this link! breastcancercare.org.uk/forum/viewtopic.php?f=22&t=30474
It’s great to hear that you are feeling well!
Best wishes,
Kate x
hiya cazza
i have a friend who is TN and had 12 nodes out of 20 affected when she was diagnosed 3 1/2 yrs ago and is doing great and has made it past that vital 3 year mark without any recurrence or progression… i on the other hand had neg nodes when i was diagnosed 2 years ago and just had a recurrence in pec muscle lymph nodes.
nodes are a predictor for prognosis but not a definite… my friend had the same chemo as you but i had e-cmf.
unfortunately we can never tell whats around the corner so you just have to make the most of the here and now… and hope that the treatment is enough to get you beyond that 3year mark when most recurrences happen in TNBC… and if you get beyond 5 years its highly unlikey it would come back at all.
Lulu xx
hi cazza, yes its daunting to hear you have nodes involved as i did too and also triple neg but i remember a post with a lady who had many nodes involved and trip neg and doing well , so please dont focus on that , if they had removed 30 nodes and the 9 were positive you would probably feel a little better than 9 of 10,as someone said on here(sorry cant remember who ) once the nodes are cancercatchers so they have done their job,good luck and hugs to you rachel xxx
Hi Cazza
I know what you mean, despite having bilateral and multifocal which was my worst factors my nodes were clear. However, my chum at work who has been through all this about 6 years ago, and was my inspiration (her and Kylie actually) had multiple node involvement (not sure exactly what number but sure its in the teens) and is absolutely fine and shows no sign of concern never mind recurrence. Like Lulu said there are no certainties in this game, but I know I like to hear of people with similar symptoms and good outcomes.
Good luck
S
THANK YOU ALL SO MUCH. Thats great to hear your replies. I completely agree about avoiding statistics about prognosis but am full of contradictions ie. I also have the need for reassurance. I realise that there can be no certainty and I have become very good at enjoying the moment. This time last year I was on second chemo and and it was a hard journey from then till February. However, since then I have felt stronger and stronger both emotionally and physically. Have just come back from Greece and had a wonderful time swimming and playing with the kids to my hearts content. Can swim further and faster than both of them (I am 55 and they are 22 and 15)! Have really regained my confidence in my body - something I thought would never happen - and its a great feeling. Now feel as healthy as I ever felt if not more so. Its a glorious morning here in Darlington and have just spent 2 hours tidying the garden. Was saying to someone the other day I can hardly remember what the treatment felt like. Yes TAX was horrible at the time but it is now a distant memory. Glad you didn’t need it Sheil. I will follow up the links you suggested. I hope other people chip in too. Once again, many thanks and good luck. Cx
Had to come back on and say another thank you to hope4444. it was fantastic to read all those positive postings from people with lots of positive nodes. Feel so much better. Was going to say you don’t know what that means to hear that good news … but I guess you do. Wish you could see me smiling! Lucylou was an inspiration too - if you haven’t looked at the link please do. It is very encouraging. I know it means nothing certain but it means I can feel more hopeful. SOOO happy! :0)
My aunt had 21 out of 23 nodes involved and she lived for 35 years post BC. They didn’t have the drugs back then that we have now either - she had a mastectomy and radiotherapy (which in the early 70s was horrible, I remember her having dressings for the burns; it was the same with a lady who lived down the street from us who had BC around the same time). She was on an early drug trial for 5FU which was the only chemo drug in development. My aunt died in 2006 at the age of 82, three months before I was diagnosed. The lady who lived along the street from us also died in her 80s and she smoked like a chimney all of her life to boot. I’m not even sure what they were testing women for back then either.
Everything to do with this flaming disease is so unpredictable, it’s the nature of the beast as they say.
Thank you Cherub for getting back to me. Its more than a year since my diagnosis and realise I have been too scared to ask about this until now. But am definitely encouraged by your response and others. Now feel like I can march into my future rather than tip-toe. Many thanks and the very best of luck to you too. Cx