SNB v. total node clearance - your experiences please

SNB v. total node clearance - your experiences please

SNB v. total node clearance - your experiences please Hi,

i have posted this under ‘undergoing treatment’ but thought this may be better here since you’ve already gone through it. here is the post:

Hi,

In August i will be having a lumpectomy. I had decided last week that I was much happier with total Axillary node clearance rather than a SNB, in terms of long-term risk, false negatives with SNB, and one op instead of a high risk of 2 ops.

However, i now have niggling doubts. What did you have and are you happy with it?

i work on a computer most of the day and am very worried about my arm afterwards.

Any advice and the benefit of your experience would be much appreciated

Thanks
tigerlily

I had a lumpectomy and total lymph removal I had a lumpectomy and all my lymph nodes removed in November last year. I to work on a computer all day, I work for a design company and being in sales I’m either on my computer, phone or driving.

I was able to drive a month and a half after the op, my arm still hurts slightly and you need to be careful with it, don’t lift heavy objects, don’t get any cuts or scratches and keep out of the sun. but life is pretty normal. If you need it done then I would definitely choose that option.

Karen

Hi Just to reassure you. I had bilateral mastectomy and bilateral full axillary clearance in January last year. I too work at a computer most of the day, in fact probably more than 8 hours a day (I am a medical secretary working for the NHS). I was told by my surgeon that I would probably end up with lymphoedema in at least one arm as I was typing all the time. Up to yet (touch wood) and my op was in January last year, I have been fine. I take all the precautions, including a high factor sun screen, although I did get burnt last summer to no ill effect. I even managed to get infective dermatitis last month from some gardening I did and luckily the antibiotics prescribed by my GP worked. If you feel happy having the total clearance then I would go for it, it is peace of mind, but you really need to do what you are happy with.

By the way, the plus sides of total clearance for me seem to be that I no longer sweat under my arms, saving a fortune on deoderants and that I don’t seem to be quite as hairy in that area either. Don’t know if it has been the same for everyone but you always have to look at the positives!

Stay well.

Gilly

SNB I had snb along with my lumpectomy and I am really glad I did it.

To answer your question regarding false negatives, what the surgeon does is that he first tests the sentinel node during the surgery. This gives him a first result (negative or positive). If it’s positive there and then during th surgery he proceeds with a full axillary clearance. If it’s negative, he sends the sentinel node to a lab which tests it further. This further lab test is to make sure this is not a false negative.

I had my lumpectomy and snb (which revealed itself to be negative during surgery), then 3 or 4 days later (or maybe a week, can’t remember), I was told that my snb had been further tested and was still negative so no more surgery. If it had been positive after the lab test, I would only then have had the full axillary clearance.

So don’t worry about false negatives cos they really make the utmost to avoid them. Also I think statistically the number of false negatives is very low, which means subsequently reduced chance of this second op for full axillary clearance.

For me, the short-term benefit was that I didn’t have to stay in the hospital as long cos I had less drips since they only took 1 or 2 nodes out. Long-term, I don’t have to worry about my arm swelling (there is a tiny tiny risk so I did avoid carrying heavy objects especially at the beginning), I have had no pains in my arm, and I guess the more nodes I have, the stronger my immune system is (although I am not sure if this is true medically, it seems logical to me but I am no expert).

So just another point of view. I trusted my medical team, they had been doing this snb for a few years, so I went along with it. Maybe check how long they have been doing the snb, cos only special surgeons and hospitals have learnt how to do it.

All the best with your decision

blossom

Hi

I didn’t have the option of SNB but on the advice of my surgeon had full lymphnode clearance.

The benefits for me were that, although there was almost no evidence of any spread I have the reassurance that there are no ‘infected’ lymph nodes left. I also didn’t want to face a 2nd op.

The down sides for me have been:

  • need to look after the arm better - easily get infections if cut
  • I’ve got mild lymphodoema but the specialist nurse has been brilliant.
  • the op have left me with a tightness in one of the muscles and I’m currently having physio to help

I have now, 18 months on from op, changed my habits and now naturally carry heavy bags with my good arm and wear gardening gloves, in fact do lots of sensible things with my bad arm apart from raising the wine glass a little too often!

hope this helps. Ruthie

axillary clearance Hi Tigerlily
In Jan 2005 I had a WLE with full axillary clearance on the right side - that was the only option given to me. Afterwards I had very good movement although not quite full range. I did the exercises they told me to. It seems ok now. I did have problems with seroma which needed draining 3 times a week - it feels like a tennis ball in your armpit. That went on for about 5 weeks when I had to have a mastectomy because the margins weren’t clear. I was driving 2 weeks after the axillary clearance. I had some strange pains down my arm for a while after - like electric shocks, and I wasn’t allowed to wear deod or to shave. I use an epilator now as I found the results of a battery shaver and immac were useless. I am right handed so use this arm for everything. Earlier on this year I was worried about lymphodema after I’d done some very heavy gardening. I had no swelling but strange pains and an achiness there all the time. I think now that I overdid things and strained the muscle. My breast care nurse said it’s heavy pushing and pulling and carrying heavy bags that are the main culprits so I avoid doing too much and am using my left arm more. I am learning to pace myself - not something I find easy! The BCC leaflet says that 1/4 to 1/3 of people may go on to develop lymphodema at some time but I think that it is managable in most cases.
Good luck with your decision.
fantan

Thanks for your replies. i am getting my mind about it more now, and i think because of the size that the docs will still want to do full clearance. I’m more comfortable with that now, and will follow their advice on this one. i see my onc on tuesday. Your stories have ben really helpful.

Treatment ‘choices’ Hi This is my first posting. I am just newly diagnosed with low grade stage 1 ductal carcinoma and am now having discussions with the doctors on treatment. I have been reading about snb and feel that it would suit me to have that done. I feel that the probability of my lymph nodes being involved is small and so the lower the number of nodes taken out the better. When i mentioned it to the doctor he initially said that they don’t do it as part of the procedure but will do it for me. I thought that you have to be specially trained to do the biopsy. He also said that no test will be done on the detected node (sentinel) during surgery but only in the lab. As I understand it to be, the sentinel node IS examined during surgery and then the decision whether to remove more nodes follows . How do I find out about how long a surgeon/team has been doing the operation? I am also feeling uncertain because the doctor has suggested a mastectomy instead of a lumpectomy which I would prefer to have (as the tumour is less than 2cm). Do we have to stick with the doctor that we have been assigned to? I am now all confused and uncertain.

i was supposed to get a full clearance however after reading up on SNB I got a second opinion. Anyone can ask for this. I opted for the SNB as although grade 2 my tumour was less than a cm. I had 4 nodes removed. My operation was in June last year and my arm is still very painful. My job also involves sitting at a computer all day and it is most uncomfortable. I had thought that having SNB would have meant less complications. Instead I suffered really bad cording at the start and I am waiting to be checked out by the consultant as my hand is now swollen. Because I had SNB the hospital are not taking me seriously I think they think it is all in my head.

Hi Aileen - You don’t have to stick to any doctor if you are not happy with what they are suggesting. Tell him/her if you would prefer a lumpectomy - maybe also call your breast care nurse to discuss. However, is there any specific reason they have given for preferring to do a mastectomy? Sometimes it can just be the specific surgeon/policy, sometimes its for a good medical reason, so ‘shop around’ for a second opinion. They can perhaps refer you to someone who will consider doing a lumpectomy instead. You need to be as happy as you can be with what they are suggesting.

Leeny - sorry you’ve got trouble after the SNB. This is why i first considered a SNB too - to avoid such complications. Sadly my tumour was 50% larger than the 2cm recommended for 5% ‘margins of error’ with SNB, so i think i’m wisest not to go with that. Do make a fuss to get the pain sorted - good luck with it.