Something I read on another thread (which I didn’t want to hijack) has really got me thinking…
Is the key to long term survival, having uninfected lymph nodes?
I myself had 2 out 4 found during SNB, and will have a full node clearence after chemo. It bothers me not knowing how many in total are/were infected…
I would really like to hear your thoughts and experiences on this matter.
interesting
i had 1 affected out of 7 but even when i asked about total removal it wasnt offerede
i constantly worry about it
I really wish it was as my nodes appear to have been clear, but if it was then I would not have needed Chemo . As I understand it, node status is one indicator, as is size of tumour and grade. Hormone and her status also play a part, and I think local vascular invasion counts too. I have played around endlessly on the on line predictor sites to dork out permeatations of survival stats for different things, and for me my grade 3 no nodes looks equal to a grade 2 with less than 3 nodes for survival rate. And also bc is such an unpredictble thing that nobody knows in an individual case what will happen. Don’t beat yourself up over it, easier said than done I know but you can’t change the pathology sontry and concentrate on your treatment. Xxxx
It does make you wonder, doesn’t it. I had one infected node out of the two originally removed. My surgeon then removed the lot (another 11) so score was 1 out of 13 (the rest being OK). With other factors, size grade etc, I did not neeed chemo but now I wonder…
I read that as well and didn’t want to google it (I had 7 infected) in case I scared myself so have added it to my list of “questions to ask at my next onc. appt.”
Ali.
I had 3 out of 3 infected in the SNB , then chemo and then removal of the remaining 20. The report said none of the remaining 20 had been infected with cancer- they can tell apparently even after chemo.
The only problem I now have following full auxillary clearance in Lymphoedema in the breast- not enough said about this before the op… still it wouldn’t change anything.
My consultant says the lymph is only one passage for spread and the best way to try and keep BC away is to eat healthily, drink moderate amounts of red wine and enjoy every single day! If only it was so easy!!
HI Tree
I don’t think there is a key to long term survival. It seems that clear nodes gives a better prognosis, along with lower grade, smaller tumour, no vascular invasion, so there are various contributing factors.
I know my case is only one anecdotal example but there was no evidence of spread to nodes (sampled 5) when I had my 7mm grade 2 cancer removed with clear margins, but somehow some stray cells managed to find their way into the lymph system after several years. I’ve done the same as Vickie and played around with predictive websites but it still only gives us a probability.
Anyway, I’m holding your hand through the vile chemotherapy and trusting we’re putting ourselves through hell for good reason - any other cells will be DEAD by the end of it, no matter where they’re hiding!!
xxx Jane
My understanding is that your long term prognosis is better with fewer nodes affected. However there are no guarantees and people who are node free at diagnosis still may go onto get secondaries (but much less likely than someone with multiple nodes affected) and people with 20 nodes affected may go through primary treatment and then never get a recurrence.
Also as others have said here there are other influencing factors too such as her 2 status, vascular invasion etc
As they say…Lies damn lies and statistics…I had one node affected and was given 93% chance of being alive in 10 years however it’s a bummer if you get to be the 7% so I try not to think about it. We could all fall foul to the proverbial bus!
Hi all,
Have had a quick look here, probably shouldn’t have as I had 27 out of 28 nodes affected 
At the end of the day I think it all comes down to luck. I’ve never smoked, breast fed all my children for 6-9 months, eaten healthily and exercised regularly and feel that I shouldn’t have got the cancer and the lymph node spread which was found during my operation. I’ve seen many people go to the breast clinic who do all the things which cause cancer and come out with the all clear. Doesn’t make sense.
Have decided that when your time’s up that’s it. Got to make the most of what you’ve got while you’ve got it!!
Gill x
Hi
We all have reasons to worry about our particular cancer. The dx brings uncertainty and even women with good prognosis face the fact that it might come back one day. Like others have said, nodes, grade, hormone, her status, vascular invasion, tumour size etc all play a part. Our cancers are as individual as we are. Your doctors know all of your stats and plan your treatment accordingly to give you the best chance at along life. No one know how your body will respond to treatment, so all we can do is focus on getting through it the best we can and keeping healthy.
Good luck with your treatment. Dx
i’m still trying to stop worrying about the L/n involvement of my wife, 60% cancerous of the 27 removed, also silly size tumour, and widespread lymphovascular invasion.
It seems like a waiting game forever now :(, just a stupid struggle everyday trying to be upbeat and positive but knowing deep down there’s a pretty high chance of recurrence, and wondering how to put it out of my head while my wife is being given the full hit of everything with all the effects to try and help her :(.
Everytime i speak to the oncy’s/surgeon they just can’t/won’t say, which i know, but telling me it’s poor and last week just checking we had life insurance again, doesn’t put you in the best mood, i just wish at the end of all the treatment it was a guarantee of good health, but they just won’t say it :(.
They won’t say it because they can’t say it. I’m 20 out of 23 nodes and grade 3. There is simply no point in worrying every day. What does it do but waste time? If it hits, it hits. So enjoy the time you have, every day, and hope that there are zillions of them.
With cancer all you know is what you’ll die of, not when.
I had heavy lymph nodeinvolvement, but I try not to focus too much on it. We are all different, and no two cancers are the same. I will do my very best to stop it coming back, and intend to live life to the full.
Dotty 2 xx
Just another wonderful anecdote - my aunt had 15+ positive nodes 25 years ago and is still with us , she’s had secondaries for years and years and just keeps on trucking. Nicola
I’m 16 months post diagnosis. Chemo to shrink 6cm ILC tumour - at that point onc thought maybe 2 nodes were affected. After surgery (mx with expander implant) I got the news it was 16/18. Felt very low and scared. That was 9 months ago. My recent scan showed NED and that’s what I’m clinging to, alongside the fact I feel very well and fit. But when asked, my onc did say he thought I had about 1 in 4 chance of It coming back. I sort of knew this but wanted his opinion. Just have to hope I’m in the right part of the survival graph, eh !! I always did eat well but I’m trying to eat even better, more berries, green tea, turmeric, extra virgin olive oil, etc. Don’t know if it will help but I’ll feel I’ve done my very best. I’m not ready to go anywhere just yet. I want to see my 4 children grow up. Meanwhile I’m trying to get the best out of every day.
BC is just so unpredictable. I had a TN 2.4cm tumour, one node pos but with so much vascular invasion they didnt expect me to get through chemo without it returning. I was given a 35% chance of just surviving 5yrs and am still very much here and still NED nearly 7yrs later.I always told myself I’d as much chance of coming out the good side of the stats as anyone else!
I agree with josyemarie that BC is so unpredictable and also I’d say that the stats are not always accurate or relevant. On the downside I was given a 90% + chance of ‘survival’ after 5 years as no node involvement, low grade tumour of 17mm etc. Ok, I survived 5 years but I did develop secondaries within that time, something my oncologist did not expect as I’d already been signed off! My advice would be get on with your lives and put your experience of BC behind you if you can, certainly don’t let it hang over your heads.
Nicky