node clearance
node clearance Hello everyone, haven’t been on for a while. I have a question; I had a wle last February (2006) with node sampling and then was told that I needed a mastectomy and clearance. Had the op arranged within a few weeks but at the pre-op appointment was told it was just the matectomy and not a clearance aswell. Anywayway on the day, my bc nurse came and saw me and reassured me that it was a decision made at a meetiing a few days before my op by one of the oncs. Well at the time you kind of want it over so I just went ahead, they explained that I was to have rads to my armpit later (after chemo) and that this was just as effective as a clearance but less intrusive. I feel very confused, because lately I seem to be hearing that everyone has a clearance. Am I the only one to have my nodes ‘sterilised’ by rads? my bc nurse said it is the equivilant of a clearance. Why is this bothering me nearly a year later?
Sorry to blah on, it is just niggling. I am seeing bc nurse next week and I will ask, yet again, but for now I just wondered.
hope all is well with you
hugs
Scarlet. xxx
Dear Scarlet I am sorry to read that you seem worried about the treatment you have undergone and see that you will be speaking to your breast care nurse soon, I am sure the other forum users will reply to you with valuable support and information very soon too. In the meantime, you are welcome to contact our helpline for support and information regarding your concerns if you feel this would help. The helpliners are breast care nurses or have had experience of breast cancer so will have an understanding of the issues concerning you.
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Breast Cancer Care
a bit confusing… Hi Scarlet, yes it seem s a bit confusing. I had lumpectomy & 8 nodes removed (2 positive) and a lady who was being treated with me had mastectomy , node clearance AND rads to the axilla &clavicle. Were you node positive? -It seems a bit like a sledge hammer to crack a nut if you were node neg-or did they not do any node sampling at all.Cannot imagine this to be the case because (rarely) someone with a very small tumour or an occult BC can be node pos.
I do still fret about things too. Having looked recently at my tumour histology report, and having believed all this time I had clear margins (not offered any further surgery) - I see one of the margins was positive for DCIS. I assume they clobbered this with the boost radio, and I’m trying to decide whether to ask about this -as I might not like the answer!!
Cherry.
Node clearance Hi Scarlett - your experience sounds confusing to me too. I had a WLE and 8 sample nodes removed. 3 were positive for cancer, so I then had complete axillary removal (18 in all) with a total of 4 being positive. Do you have your pathology report? This should detail the number of nodes (if any) that were positive. If any were, I would have thought you needed them all removed. I would certainly ask your bc nurse or Onc to explain the situation in more detail. I just don’t understand their reasoning that rads can zap any cancerous nodes in the armpit - certainly not best practice. They should already know if any nodes were positive, after the sampling. If that is the case, why did I have all my nodes removed, chemo and then rads? Just doesn’t seem to add up somehow.
Perhaps your nodes were clear, and this is something I would, if I were you, want an absolutely specific answer on, otherwise you will always wonder if they got all the cancer. Please contact your team and try and get answers. Actually, I would put it in writing, so they are legally bound to reply and you can then look at what they are saying. If you haven’t had a copy of your pathology report that was done after the WLE, please ask for it. At first glance it looks daunting, as the language is like double dutch, until we start to research the terminology they use - eventually it becomes crystal clear. The path report is probably the most important piece of information you can have, that defines and clarifies your bc status. This should also state the size of the tumour, stage and grade, along with your ER/PR and HER2 status, which is important when deciding if you need hormone treatment (tamoxifen or Arimidex and possibly Herceptin if you are HER2+) after finishing rads.
I don’t know where you are being treated, but my hospital in Plymouth (which has a Breast Care Centre of Excellence) was always upfront in providing any information I requested. There was never a problem, and I didn’t have to pay for any of the reports.
Hope you get the information you really need.
Take care.
Liz.
for lizzycee and cherryred Thanx for your replies;
I had one out of four nodes positive for cancer, so it was on the move but not in a big way. Anyway the way I think they looked at it was that because one node was positive I would ‘benefit’ from chemo and later rads to scar, armpit, axilla and a little patch on my back?!! Anyway had all that and did ask them all [consultant, surgeon,bc nurse and onc] why no node clearance and they all said the same, that rads ‘sterilises the area’ and is as affective as a clearance but less invasive. I am going to clarify this again on Tuesday when I see the bc nurse and I am going to make a note of the reports that you suggested I see, so thanks for that.
It’s all so mad isn’t it, I mean I know that we have to trust these people but sometimes it’s not easy and to be honest, I sometimes wonder if I am only coping because I am in denial half the time!! As it is, my bc nurse was just less than horrified when I said that I want the least possible operation for a recon, which means an implant only. I wish that they would all remember that we are not all the same and there is no right or wronge way to go.
Best wishes and wil let you know how it goes.
Scarlet. xxx
Node clearance - feel clearer now Hi all
I saw my nurse and asked her why it seems that I am the only person in the world to have had rads instead of node clearance.
Firstly she reminded me that this illness is very individual and that no two are the same. I did have a blue dye sampling done at the wle, this does track the ‘natural’ path the cancer cells would take. I had 4 nodes sampled and only one out of four, the first one, affected. I had a grade two invasis carcinoma with extensive dcis and lcis, was hormone receptive and her-. All of these factors were taken into account, it was what they call ‘well behaved’ . They knew that I was going to have rads so the decision was made to do the nodes with the rads. As the risk of it spreading was almost non existent and the chemo and rads would act as an insurance policy in my case, I now feel more confident with their decision. The trouble with this whole carry on, is that we are all different and looking for our own answers, it really can drive you mad sometimes, but I think we’re like that because it is very clear - especially when you compare stories on these forums - that we are all treated differently; not just because we have our own individual breast cancer but also because, as much as we are led to believe that the treatment is the same, different hospitals, trusts, surgeons and every one else involved seems to have their own protocol.
Anyway, moan over…I feel alot better now and guess that one day I may learn to trust my team completely, I don’t know why I always seem to hold back just a bit.
Big hugs to all and hope that I haven’t confused anyone!!
Scarlet. xxx
Hi Scarlet -glad you have some answers now -am I right in thinking you’ve had a mastectomy-do you know if you are having radio. to the scar line? I’m not sure what the patch on the back could be-but the friend who was treated with me (who did have radio to her scar), developed a small pink patch on her back because of the strength of the radio – think it was due to her tumours (3 =7cm).Where are you with your chemo?-rads is a breeze , in my view, after chemo!!
Good luck with it all, and keep us posted.
Cherryx