Thanks for all your comments.
Have finally spoken to bcn who says that although I had snb and blue dye, the surgeon then when on to do a clearance to be extra cautious because of my age. Thankfully all were clear.
I think Lily is absolutely right that many surgeons are still training with SNB as it is more complicated to do than just removing all the nodes. Some hospitals haven't even got anyone in training to do it at all! At my hospital they are now moving on from SNB to something called "micro bubbles" which are injected in and which will show BEFORE surgery how many nodes are affected - if any. It's routinely done in Switzerland where my surgeon went to see it being done. It's really unfortunate that there isn't a complete standard of care right across the country and it's a real post code lottery as to where you go and what you get.
I had been pondering about my snb too after being told they only took one node, which was clear, despite me being told 4 would be taken. I caught up with the surgeon in my 12 weekly check and he confirmed that only one was taken. He said that some tumours have complicated structures but mine was very clearly a simple structure and they needed no more. He said they use the blue to dye to trace the sentinel node and the geiger counter to see which one is 'hot'. In my case just one node was bright blue and hot so a simple structure. He also said that a famous doc was in theatre overseeing my surgery (one of the first through in my area I think) and he said that was a perfect procedure. So hoping they are right. I wonder whether some people who had snb and a big scar were part of the number of trials a surgeon has to complete successfully before they are allowed to just do snb and the minor scar. When trainingand until they complete a fixed number accurately, they have to do the snb with the dye and then the traditional clearance. We were all about the time snb was being introducedso probably a lot of us were guinea pigs. Apparently the dye really stings so they do it while asleep. My family were chuckling at how blue my face was,a real smurf
I'm interested in what you've said Rosieff. I can't see the point of SNB if the results are not conclusive - they might as well continue to remove all the nodes. ' 'to be on the safe side'. I would query what the BCN told you as it doesn't really tally with what I was told & what I have read.
I had SNB last July. This involved 2 nodes and cancer cells were found in the primary one. I then had full clearance (which in my case was apparently only 15 more nodes. I queried this and was told no two people have the same no. of nodes.) All of these were found to be free of cancer & my surgeon was very regretful that he had had to remove them - in his words, it had 'proved unnecessary '
Unfortunately the 2 lots of surgery in close sucession led to my wound becoming infected and delayed healing. Subsequently I have had several courses of anti-biotics for mild cellulitis and one very acute attack- and am now being treated for lymphodema. I ascribe all of this to having had so many nodes removed ; my under arm, axilla and side of my breast still feel numb and as if that they are 'not part of me' - and I supect that this will be a long-term effect.
When the blue dye is injected into the breast, it is then traced to see which node/nodes it flows into first (this being the Sentinel node/nodes). When i asked in my case which one of the two nodes that they removed was the Sentinel node, they could not say as the dye went into both similtanously and therefore they removed both and I was told that you can have more than one Sentinel Node. I asked why they did not take a few more at the time to test as one was positive and one wasn't. They said that they can not tell if they are cancerous until they study them under a microscope.
Not sure in Pineapple's case how they took 3 and then moved onto take 5 without testing them first, as this is why alot of women end up with a 2nd op to have Standard Lymph Node Clearance as 1 or more nodes tested positive after 1st op, unless pineapple had two op's??
Anyways, the part they has convinced me of the benefits of total clearance, even with the risk of side effects is when the BCN explained that even though the Sentinel Node may show positive and the others haven't, that does not necessarily mean that some of the other nodes are not affected, as there is lots of little pathways that stem off in different directions and may have by passed level one and gone onto level two. So that left me with no doubt as to, could I live with that doubt or what if!!!! It is the same in the choice of Chemo as a preventive tool....should I, should I not or what if! don't want to go down that uncertain road, so i will throw what ever i can at the bugger, that way i can at least say i did my best!:-)
i have been very confused about the removal of my lymph glands, i was diagnosed dec 08 had my 1st op jan 10th which was a wide excission and removal of 13 glands 1 of which was inf, had further op feb 10th to give a safe margin, most people seem to only have 3-4 glands removed, i wonder if my pain and discomfert in my arm and back is due to so many being removed i have a 4in scar, anyone shed any light on this p-lease
The dye indicates the sentinal(first)node so they take that out and an area round it and like said before the number in this area can vary hugely ,although it may usually be about 4, seemingly no-one knows why different people have widely different numbers of nodes.
When they do this procedure they have to move or interfere with the nerves that run the length of the arm hence the numbness and that probably will vary from person to person to.
I had 4 nodes out,all clear thankfully ,have roughly a 3 inch scar and can wave my arm like a good un 4 weeks post op,still have mad tingles and numbness off and on in upper arm.
I had 4 removed in the snb and a further 25 removed during surgery. My understanding is that they are not easy to remove and therefore they may end up taking more than they first realised as Roseieff says below.
I had a mild allergy to the blue dye, which is rare and easily sorted with piriton. But I was told I had a blue face whilst in recovery. - how lovely!
I understand what you are saying Rosiefff, that everyone has a different amount of lymph glands. What I am trying to get to the bottom of is the fact that the old fashioned method involved removing 10+ glands for testing, which resulted in side effects and a large scar. The new method of SNB is so that they only remove between 1 and 3 for testing, which leaves only a half inch scar, and less side effects. Therefore why after my SNB have I got a 4 inch scar, a numb arm for the past year, and 9 were removed for testing? They were all clear. Its like they almost did it the old way but used the blue dye too!!
When they did mine i had 3 removed from the first area, one node had just a tiny amount of cancer cells and it was full encapsulated so they went onto the next area and took 5 out. they were all clear so they didnt remove any more - so 8 in total
I had snb and they took only 2,of which 1 was positive. I am now going in on Wed to have node clearance. I asked BCN why people vary in terms of different amount of nodes removed and her explanation was very simple(and similar to what the other ladies were told). When the surgeon removes the fatty bit under the arm on lymph clearance it just depends on the individual how many they have in that tissue.
Thanks for your replys.
I have left a message for my bcn to phone me with the answer to this as its bugging me now!
Let you know what she says.
I had 4 taken out the first time but 1 was positive so i went back in, in total they got 28, 2 were positive, im not sure why they took 9 from you but good news that they were all clear.
Hi I had 8 removed with snb... 3 had cancer so went on to have total clearance. I had another 21 removed 2 with cancer. So 5/29.
It varies from person to person but I was told snb can be up to 10 nodes removed and everone has different totals.
All the best Lynn x
I'm sure some of the others might know more about this... but i think it might be partly that different people just have different number of nodes and the only way of knowing how many is to remove them all...
I had a full node removal - and they only got 6 in total 😮 lol and i have heard of other women having 30 or more... I was surprised when the figure was so low... and my surgeon just said some people just have more than others...
So it might just be that when they took the usual amount for an snb they got 9 if you have a lot of nodes anyway iykwim...? Good news that they were all clear 😄
It has been a year since I had lumpectomy and snb at the age of 34.
Today at my follow up I asked how many lymph glands were removed during snb and my surgeon immediately replied 4 (as if it were a standard amount for all snb). However, when he looked at my file he said "actually we removed 9 - all clear".
I should have said WHY? But I was so surprised at 9 that I didnt ask. I thought that with snb they only removed a couple? Could it be he was being extra careful because of my age?
Anyone had this amount removed with snb?