hello everyone,
This is a question that has been bugging me for some time, I asked my BCN a while ago and didnt really get a proper answer so have just made assumptions instead i.e. looked on the bright side!
Now I know there are women on here who are very knowledgeable about such things so perhaps they can help me.
I had a SNB where 4 lymph nodes were taken, they all had cancer in them. So I then had a clearance but only had another 6 removed. None of these had cancer and when I asked my BCN why I didnt have seem to have a full set i.e. 28 or 29 like some people seem to have she started talking about ladders and stuff! I was too stressed at the time to go into it further!
As I had 4 positive lymph nodes I had scans as a matter of course. 4 is apparently the trigger in my Hospital for checking for secondary spread and I notice that in things about prognosis having 4 or more is a bad thing whereas 3 is not so bad. Can anyone throw any light on this for me? Does having 4 out of 10 with cancer mean almost half of my lymph nodes had it, is it better to have more lymph nodes than less?
I would appreciate any information!
Polly xx
Hi Polly,
The amount of lymph nodes varies from woman to woman, I had 10 in total and 7 were infected. But some women do have as many as 30, but as far as I know between 10 and 30 is the norm.
There are ladies on here with far more knowledge than me about this subject and I’m sure you will get a lot of more helpful replies very soon.
Good luck with your treatment,
Tracy xx
Hi
I had 14 nodes removed and it was in 8 of them. Not sure of the signifinance and like you if anybody can help with more info that would be great.
Liz xx
Hi
Sorry I am no expert but thought I would add the bit I was told because it does not seem to be an accurate science, and may shed some light. I had a radioactive isotope injected in the tumour and the dye before SNB. It was planned to take out 4 nodes with one looking suspicious. I found out on my second visit that they only got one out and they were surprised it was ok. I asked why only one was removed as I thought it could not really be accurate with just one and a bit annoyed that I had all that stuff and they still didn’t get 4 nodes. I was told that they find the first sentinel node and then take out a chunk of tissue because only the first one gets radioactive. Then it is up to the technician how many nodes they search for and find in the sample. According to the oncologist they probably just did not actually find any more in my sample after the first result but they were probably more in the sample. This worried me until I read more about how great radio and chemo are at ‘mopping up’ the micro parts if any slip through. The lymph can jump nodes too, they do not go along in order, hence the tracing to spot their route. Mine went straight for the armpit as the lump was on the top near my armpit too. My friend had 18 nodes out and was told there were about 40 in the area. The book I am reading says that the lymph nodes being positive or negative can give an idea of what treatment will be best for you but that in a large number of people, this is not accurate. So people with negative nodes like me still need chemo because of other factors when they work out your score. I think you might get a better answer from your breast care nurse as I think it might be another case of everyone is different. Good luck
Lily x
Hi Lily
If the book says lymph nodes being pos or neg determines treatment, I am wondering how that works when chemo is given first as my case and then Herceptin was planned and first one given week before WLE.I had 21 nodes removed and none were affected.
Polly, can’t answer your query, but hope all works out for you.
Take Care
Mary
x
Hi Mary
I cannot quote more without saying something that might unintentionally unsettle someone else so I won’t. There are different chapters for people who have neoadjuvant surgery, which i didn’t have so I have not read that part, it is a 600 page book. I cannot find anything specifically about numbers of nodes, so sorry I am no help there. I am really glad that yours were negative and hope that your treatment goes well. The book I am reading is candid and I do often have to put it down and walk away. I bought it because it was recommended so strongly but biographies are much nicer to read.
Lily
Sounds rivetting.!!! ha ha
That’s ok ,was thinking out loud really.
Mary
X
I had “sample node removal” when I had my WLE - the tumour in the breast was non palpable and there were no lumps in my armpit, so I was surprised this was being done.The 2 cm tumour was found at a regular 3 yrly mammo. I was so ignorant then, the BC nurse had to show me a diagram of the lymph nodes in the axilla area (apparently we have lymph nodes all over our body, hence the diseases Hodgkins’ lymphoma and Non-Hodgkins’ lymphoma. A friend was dx with Hodgkins’ lymphoma, tumour in her groin, 5 yrs ago and is now NED).
I had 8 nodes resected, 3 were malignant, and I went back a month later for total axillary resection, 1 more node malignant. As far as I know, I had all my lymph nodes removed, a total of 18. This was when chemo was first mentioned, quite a shock as I thought I was only having WLE and rads. I asked why chemo and rads? - the Oncologist said the chemo was to mop up any microscopic cancer cells that had gone through the lymph system to the bones or organs, the rads to take care of any remaining cells in the breast. That made sense to me so I went ahead with both chemo and rads. Not fun, but doable.
I had a chest x-ray, bone scan and liver scan as I started chemo, thankfully no spread.
On Arimidex (well, was for 4 yrs, but stopped it 10 days ago because of severe pain in my left hip, left foot and both hands, to see if this is a side effect of Arimidex) - if the pain does not go away in 3-4 weeks, GP is going to refer me for an orthopaedic assessment. I already have osteopenia and osteo-arthritis, so that may be the cause, although I am on a bisphosphonate and Calcichew/Vit.D to prevent bone loss.
Some of the ladies here know a lot more than I do and hopefully they will post with more technical information for you.
Take care,
Liz.
Thanks everybody for all your help,
As I thought it sounds like it is not an exact science and we are all different. My BCN said lymph nodes are in a ladder and that cancer does not skip a rung which sounds different to what some people have been told or read, i.e. because all in a rung were clear, then the next rung is clear. I think Ive had rads to that area as well anyway, as my onc said, belts and braces… and another belt! I think surgery x 2, chemo, rads, herceptin and tamoxifen is pretty good going! Not sure they can do much more for me!
As to why 3 is the cut off in terms of your prognosis being better, I just cant get to the bottom of that one, it might just be some statistical thing theyre using. By the way I had scans etc. when first diagnosed and did have a 5mm nodule in my lung which they are going to check next week with another scan. Was very nervous last week but am feeling a bit better now, if its still there and unchanged then its nothing to worry about and my BCN is perhaps supported in her theory that scans at diagnosis do more harm than good in terms of worrying people sick.
Thanks again,
Polly x
Hi Polly
How I agree with your BCN that scans at diagnosis cause more harm. So far I have had a mastectomy with 4 nodes removed, 3 positive. 3 positive then prompted a load of scans and because something “suspicious” (as quoted my BCN) was found on my liver at literally 11th hour on 17/4 my operation for clearance of remainder of nodes was cancelled at last minute. The stress has been unbelieveable. A CT scan was then performed which found nothing conclusive on liver. They are unable to say what it is!! After all the stress. They have now asked for an MRI although BCN said a previous bone scan was clear. It is unbelievable. I can see why people dx with breast cancer die early and not necessary of bc. I reckon they die of heart attacks brought on by the stress of all the countless tests and terrible treatment which I have been told is necessary because it is a terrible disease.
Starfish x
Hi Starfish,
Know what you mean, I think we “spoke” on other thread. I should have had my follow up scan 6 months later but I conveniently forgot about it! They said it didnt make any difference to treatment anyway so what was the point! Oh well, now I have to face the rescan, last week was so depressed and down but this week have perked up considerably! When I had my first set of scans I was terrible, so anxious I had chest pains and thought I was going to have a heart attack!
Polly x
Hi
This is all so confusing… I had 9 lymp nodes removed which 5 were infected. I was told that if you have 5 or more infected your prognosis is worse… As for the ladder effect I asked if they were infected in a ladder effect and the answer was no 2 at the bottom 2 at the top and 1 somewhere in the middle. I then asked if this is normal and i was told yes. BC works in misterious ways and for some reason the few in the middle were clear.
I still find it hard to accept the whole lymp node thing and keep on thinking its spread beyond they 5. i just wish none of them were infected but theres nothing I can do now.
sukes
Hi All
Very worrying this. I had WLE & nodes clearance, was advised that 7/10 of my lymph nodes were infected. I too have read that the more infrected the worse your prognosis.
Not at all sure about the ladder thing.
Cant help but worry although agree with Sukes there is nothing I can do now but keep fingers crossed.
Love
Tips x
Hi,
The book says there are between 30 and 60 lymph nodes under the arm. I guess we are all different. Hope this is of some use and good luck to anyone who has news this week, oh hell we all need and deserve good luck
Hugs
Lily
Oh dear, I didnt think this would turn into people worrying, I am so sorry if this is the case, Sukes and Tippy, what you have been told and I have been told seems to suggest that there is nothing straight forward about lymph node involvement. I have heard stories about people with lots of lymph involvement who still have no recurrence and people with no lymph nodes active but who have had further problems, as you say BC works in mysterious ways. Lily, I dont know about what it says in your book. My BCN said that you could have lymph nodes with cancer at the top of the ladder, if the next rung were clear then the rungs below that were also clear, I dont know whether this is true but it made me feel better, at the end of the day I think we woudl just all like clear information.
Take care everyone xx
I’m now joining the club of the ‘really worrieds’ as I had a SNB. I was told that I was clear - but I was not told how many nodes were taken or what they found - I naively assumed at the time that they only took the Sentinal Node and if that was clear then that meant the others were clear too 
i was told that I was in a grey area for chemo and that if I was in the States I would get it, but if i was in Milan or Vienna I wouldn’t. Was also told that due to mastectomy I wouldn’t need rads.
Now I still have a tender spot on one rib and despite having a clear isotope bone scan I’m still panicking. Do I need an MRI of my rib - does anyone know if they show up more things than an isotope bone scan? Thanks for listening, Grace x
Hi Grace
I am sorry to read that you are feeling so worried, please feel free to call one of our specialist nurses on our helpline who can talk things through with you. The number to call is 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Whats all this about a ladder?! Never heard about it before and am now confused, can anyone explain it clearly for my simple brain?! I had a sample 4 nodes taken. 2 were pos so then had full clearance in a second op. They only found another 3 nodes with 1 more positive making my tally 3 out of 7. I worry that I had more nodes that were missed as my BCN said it can be hard to find them in amongst the crossing tissue
I was never offered further scans, and live with the constent fear that it has spread.
Irene
Hi Irene
You may find our publication called ‘Understanding your pathology’ helpful to read, it contains some information about lymph nodes which you may find of interest:
breastcancercare.org.uk/docs/pathology___feb_08_0.pdf
Best wishes
Lucy
I was diagnosed april 06, had mastectomy and axillary node clearance, they already knew there was node involvement as they had biopsied a mammary node which was positive. Including that node I had 10 out of 12 positive and went on to have chemo, rads (due to large node involvement) and am now on arimidex.
The number of nodes we all have varies hugely, it can be as few as 4 or as many as 40 and sometimes more, when they do the clearance they remove the fat pad containing all the nodes and it is the pathologists job to dissect them out and look at them to see if they contain cancer.
I spent a long time totally hung up on the amount of node involvement and the fact that it meant I had a worse prognosis but now, over 2 years on, I’ve got my head round it and I’m far more philosophical, there’s no amount of worrying that will change anything and as far as I know I’m well. How long that remains the case is in the lap of the gods but I try not to worry about the future and concentrate on enjoying the present but it took me time to think like this. So for all those recently diagnosed and struggling to come to terms with it, give yourselves time, it does get better.
Claire x