I had five lymph nodes infected out of the 11 removed during axillary node clearance. Looking through the site - I can see that 11 nodes is on the low side compared to others, and that some have had at least double this number removed.
I know that node numbers vary from person to person - but on that basis - given they should be doing the same job - does the proportion of nodes have any bearing on prognosis as well as the number?? For example is me having five nodes infected the same as someone else with 10 nodes infected if they had say 20 nodes in total???
I wonder if anyone else has thought about this and has any views or information??
I too was a Grade 2 like you. I had 6/21 nodes infected. When the registrar told me this, I said well thats not too bad then, expecting worse. He said well its not good! I also asked onc whether the fact that I was Grade 2 made any difference from being Grade 3. He said not a lot given the infected lymph nodes. Sorry to be doom and gloom. I know we all come on here looking for hope. I have given up asking health professionals as they seem to get training in how to be depressing. In fact the whole cancer place at the hospital is depressing from start to finish.
From what i have seen of prognosis lists (i’ve put a link to one on Bright’s other thread…) they seem to mention no nodes involved, 1-3 nodes involved or 4 + nodes involved… Must admit i havn’t really seen any articles on proportions like Bright has mentioned and would also be interested if some of the people who have been here longer have… I had 1 node involved - but they only found 6… lol (and that was on a total clearance…)
Bright - i was diagnosed late May 2008 with ibc - at that time my tumour was 5.5cm and i was strongly er + (off the scale), pr + and her neg… I had 4 x ac, 4 x taxotare and by the time of my mastectomy had shrunk to 2.1cm - but that wasn’t spherical it was more like a length of cotton… and even in that 2.1cm it wasn’t continuous live cancer cells most had died and the rest was dying… The cells in the one lymph node affected were also dead… so hopefully they were not active for very long…
At the moment i have no spread… but IBC is notorious for coming back - even many years later… But apparantly it is rare to have er+ IBC… so hopefully that will help…
I was grade 3, Her2 positive and had 1 out of 22 nodes affected. An oncology professor told me 1 was not a bad result. I had and aunt who had most of her lymph nodes affected and she lived for 35 years beyond BC, eventually dying of things related to old age (she was 83). They had only developed one chemo drug when she had it (5FU) and she went on the trial. Like everything else to do with cancer I think it’s all very unpredictable and nothing is set in stone.
I have worked out my prog using 3 different methods and got 3 different results!I will just hang on to what the onc told me which was the same as the best of the rest!Its only numbers,we are not statistics.
Have read your threads with interst.
As a paediatric ITU nurse I get asked about statistics/ percentages a fair bit when I’m at work by parents and familys.
Yeh for certain conditions I can give no’s but as to how they relate in reality to a particilar patient is really a tough one. I can have 8 patients with the same condition and 8 different progressions and outcomes. Because medicine is not an exact science becaause we are all so different.
Also by the time most medical papaers are published they are often out of date as in certain areas Oncology being one of them treatments have moved on and improved (although wish the side effects would!).
Plus when I did a pure science degree I soon learnt that statistics can be manipulated to get the result you’d like or at least point in the way you want them to.
Just a thought.
As for me I had a Grade 3 with 10/27 nodes involved. Had my complete axillary clearance and lumpectomy now awaiting the joys of chemo folowed by radiotherapy.
Starfish
Have to agree with you adult hospitals and areas are really miserable. I was asking why no magic cream for injections and nothing to do in the waiting room no toys play leaders Nothing.
Adult medicine needs to start cheering up its like the dark ages.
I had 2 out of 28 lymphs involved and grade 3 i was also dx with brca2. I said to my onc too well thats not to bad is it he replied its not a good result either. Its very scary. I think like others have said everyone is different there is unfortunatley no answer to any of it.
I was diagnosed July 06, grade 3 stage 3 triple negative 9/9 lymphnodes affected…
Im feeling really well at mo, and as far as i know have no secondary
spread. I have been tormented with the lymphnode thing since diagnosis and you have brought up my dilemma and worded it much better than i could have, i have always wondered whether my 9/9 affected is the same as having 9/20 affected.When you read 0-3 nodes isnt as bad as 4-9 it doesnt make sense when everyone has different amounts…
The way i have been told is the lymphnodes are in 3 levels the higher the nodes are affected the worse the prognosis, all my levels were affected, someone with 9/20 could possibly only have the 1st level(nearest the breast) affected.
Now im 3years down the line, ive given up trying to work out what is going to happen to me, one thing ive learned from coming on these boards is how unpredictable breast cancer is and although nodes are a indicator of prognosis it is by no means cut and dry. We are all different and our cancers are all different and we all respond to treatments differently.We just have to hope we are going to be lucky.
I was diagnoised with G3 invasive micropapillary BC and had 8/14 nodes involved. I too really don’t understand much of it but was told that it wasn’t too bad at all and that i had a 75% chance of being here in 10 years. Unsure if that is good or bad.
I’m going to try and find out more when i start chemo in 10days that’s is if my infection clears up.
Have you asked if you had total clearance, that could make a huge difference to the number of nodes removed and then percentages.
I originallay went in Dec 05 for SNB which would only remove a couple of l/n + mast.
My surgeon came to see me the next morning to tell me that on findings during the op they had to go alot deeper and remove everything. (level 3 clearance)
I had 15/20 + 8cm tumour (grown from 1cm to 8cm in th 10 weeks to diagnose me) although came in on grade 2. Triple plus, so have had everything thrown at it and still on tamoxifen.
I dont have my stats, all I know is that they are bad and got me approved as exceptional circumstances to get Tax chemo + herceptin 6 months prior to NICE approval, infact my onc on last visit has put me to annual and admitted she thought she would never be saying that to me and that I have surprised her and doing good. Thats enough for me.
Still now don’t want my exact stats as I was very depressed after my first onc meeting and dont want to go back to that dark black hole again for as long as possible.
Glenna - thanks for yout insight into different methods and the hazards of statistical manipulation. i know this too as I work in social research (education).
Gina - hope the infection clears up so you can start chemo.
Cherub - the story about your aunt living for over 30 years with nearly every node infected is an lifting one… may mean nodes infected are not everything.
Debs, I was told it was a total clearance. Guess they were efficient nodes or extra large - as there were only 11 of them.
Hi Peppa
I was interested to see your post saying that you had been diagnosed with Micropapillary BC. I was diagnosed in 2003 with Grade 3 micropapillary BC but have not been able to find much info on it or others who have. Just wondering if you have been told anything about it or have researched it yourself - would be interested to hear from you if you have any info
There seems to be very little info out there about micropapillary dodn’t there. I had thought for about 6 weeks that i had IDC and it was only about 3 weeks ago that i read my patholgy report that i didn’t. I asked my surgeon on friday about it but he didn’t say much apart from it’s similar to idc. I’m sure he didn’t realise that i had this type tho.
I have ‘googled’, ‘yahooed’ and asked.com and there seems to be a little more info on ‘ask’ but not much. It says it’s a rare sub form of IDC about 1-2% and that lymph nodes are more than likly to be involved than not and reacurrence is a possibility.
Hi Gina
Thanks for the reply. Like you I have been unable to find out anything much about micropapillary BC. When I asked my oncologist he was very vague and said ‘Oh its just one of the types of breast cancer - its not really significant’. From my own research I found out little more than you - just that its quite rare, likely to recur and is ‘associated with a poorer prognosis’.
However I was diagnosed six and a half years ago, triple negative, Grade 3 with 2 out of 11 lymph nodes affected and am still here and with no signs of recurrence at present and for that I’m very grateful
Interesting comments from med teams regarding node involvement. My team said 3/7 (7 being the total clearance) was good! And that no I didn’t need further scans, ‘now run along and get on with your life, never mind that other doctors will say the contrary on a silly website somewhere’.
I think we know about the same amount then which isn’t much. I did miss out the likely to recur and is ‘associated with a poorer prognosis’ which is abit S*** really but fantastic news about you. Hope it continues that way.
If you ever find out more please let me know and vice versa