Full axillary clearance or radiotherapy, any advice please

Hi there, i am coming to end of chemo and need to think about what to do about my lymph nodes. I had SNB and 1/4 were involved. I was told i need to choose between full clearance or radiotherapy. Has anyone else had to make this choice? if so can you share some advice with me please.

Thank you, Pauline x

HI Pauline

I was never given the choice - I had full auxillary clearance and wanted radiotherapy too but was refused it even though I had lymph node involvement - similar to you in fact. I’m now nearly 2 years down the line. Hopefully other ladies will come on and advise you.

Best wishes
Ruby xx

Hi Pauline,

Amazing that you are coming to the end of your chemo! well done.

To throw a spanner in the works, I had full clearance and radiotherapy as well! It maybe depends on the grade, I was grade 3 so I’ve had everything, I also had 2/10 nodes affected. What a difficult decision for you, does your onc have a preference or opinion at all? Personally if it was me I’d have the nodes removed but that’s just my opinion…

Wishing you all the best, take care

Veggie

Hi Pauline fancy finding you here lol

hope by axillary clearance you mean having lymp glands removed , if you dont sorry ignore this info !!!

Ive just seen a lympadima (sp) and radio consultant today , I was told today that a full lymp clearance does not take all of your lymps only some of them . I was told that no one knows actually how many we have .He said if all were taken the arm would ballon and would not be able to cope with infection that he said was just one of the reasons not all can be removed .
He said it was very misleading when we are told we have had a full lymp clearance as it is incorrect .
I had 15-16 which were effected he told me I still had loads left ( I had been told I had had full lymp clearance .

I am also having 3 field radio which I have been told is intense because of lymp involment …
Sorry If this has not helped but maybe you could now ask your onc how many would be removed and how many would be left ?ect which may help you decide .
I have also got lympadima which may have arouse due to the amount that were removed , it did put me at a higher risk having more removed .
But you know me if there is a side efect Ill get it lol .
Hope this helps
Lisa ps so far rads ok …

Oh yes that’s right Lisa,

I think there are 3 levels of lymph nodes. I had level 1 and level 2 cleared.

Take care

veggie

lisa, that was very interesting what you were told today, yes i did mean lymph nodes. i understand what you are saying about having to leave some there. In your case that is ok because you are also having rads to that area too. I spoke to BCN last week and what she could tell me is that the hospital i am at wont do both to the lymph nodes. Its one or the other, if so where does that leave you when they dont remove them all. Wonder if rads does get them all then. I have to wait till after last chemo to have a meeting with radiologist and i have to ask him these questions.
Thanks for your help, giving me lots of questions to ask when i do see him.
Lisa have you started a new rads thread? if so whats it called?
Luv Pauline x

Hi pauline
I will ask my onc tommorrow,as far as i know im having full auxilliary clearance and rads… will question further and let you know xxxx

thanks smallster, any info would be good. hope all went well for you today
Take care pauline x

How strange that we all get diferent info keep me informed would love to compare notes .
Lisa

Pauline a full auxillary lymph node clearance will remove level 1, 2 and 3 nodes.

as you have only 1 affected one its unlikely that others further down the line will be affected… its very rare that you could have level 3 affected if it hadnt gone to level 2.

when they do a sample or SNB they usually take only level 1 nodes… so this would suggest that you only have 1 node affected at all.

the average amount of nodes is around 20 but some people may only have 10 whereas others might have 30.

and even if you have all you have a full node clearance or not there is still a risk of lymphoedema.

for example if you got 1 node removed but that one node basically did all the work then removing it could cause a back up of lymphatic fluid… however people who have a full node clearance are generally considered to be more at risk of LO.

as for rads depending on your surgery it can be difficult sometimes to get in a suitable position for RT without causing some damage also although that is more likely to be short term whereas LO is a chronic condition that will come and go all your life if you got it… and again having rads wont neccesarily stop you getting LO.

perhaps it would be a good idea to ask your doc if they were in your shoes what would they choose.

Lxx

Hi Pauline

I am having full node clearance after chemo (all 3 levels) but I had 4 out of 5 affected following the SNB. I am also having rads (not really been given the choice). As Lulu says, talk to ONC and weigh it all up. Difficult one. Do you know why you can’t have both??? For me personally, I just want rid of the nodes, 4 out of 5 are showing disease and I want them gone as an extra insurance policy.
Hope you sort it and get the result you want.
Hugs
Jayney
xx

Thanks ladies for your information and advice, every health authority must have different policies, just told i wont be having both. will ask when i have first rads meeting. maybe i wont be having both as i only had 1/4 involved.

Luv to u all, Pauline xxx

Hi
I’m going in to hospital in France this weekend to have a lumpectomy and node dissection. I thought originally I would have a complete clearance but when I met with the surgeon some three weeks ago he told me that he was intending to remove the first layer of my nodes and when he was doing it if he saw other nodes swollen or in his opinion affected then he would remove them at the same time, but he was against a complete clearance because of lymphoedema. He also said that if there were any remaining affected nodes then the radiotherapy would zap them! I have to put my trust in him as he’s the boss!
I have 5 weeks of rads to look forward to after the op.
I have a Grade 3 tumour at Stage 2 and have just completed five months of chemo, which they say has worked well - fingers crossed!
Love to you all
Ginnyx

Pauline, probably told you this before but when i had WLE they did SNB and found 2 out of the 4 removed were infected so i think luckily for me they do the testing whilst you are out, so they then removed the rest 21 all together, when i got the results of those 2 weeks late no more were affected. But I am having rads.
Its all so confusing isnt it when they do different things in different areas!!!
love debs xxxx

Hi Pauline

I had 2 sentinal and one other iffy node removed original - all positive,(first level I suppose). As they were postive my BS said will have to have Axillary Clearance, second level under the arm, they removed 24 and they did not show signs of disease. He then said I would have chemo then rads - to breast, underarm and up to the collar bone area (third level). I am stage 2 and grade 2 and just strted my chemo - yuk! Good luck hope this info helps. Lyn x

Hi Pauline

I would ask what, assuming the two prognoses were the same, would be the risk of developing from the radiotherapy:

a) long term shoulder and neck problems.

b) lymphoedema of the arm and/or trunk and breast or both.

c) radiation induced brachial plexopathy (very rare, but it still occurs)

I have a) and b) as a result of radiotherapy. If I could have avoided it (don’t think it was possible in my case, as I wasn’t offered any choice of treatment apart from ‘take it or leave it’), I most certainly would have wished to.

I understand that radiotherapy, depending on strength and where exactly it is targeted can increase the likelihood of developing lymphoedema by up to 6 times. Given that NHS lymphoedema services frequently leave a lot to be desired, if you can get some idea from your onc of your increased liability of developing this condition (and also c)) as consequence of radiotherapy, this may help you in coming to an informed decision.

X

S

Thank you bahons2, have noted down the questions to add to my ever growing list. I need to go in and look like i know what i am talking about, that way they may be less lickly to fob me off. Thanks for all your help

Luv Pauline xxx

Hi I have just had radiotherapy to my armpit and breast. I was given the choice but told that there were plus and minus to both procedures with ,in my case, no firm preference. I preferred to go for radiotherapy as I felt that that would zap everything rather than be at the hands of a surgeon plucking whatever nodes he thought were dodgy.
Only time will tell but I think that if the oncologist had actually thought that that was the wrong decision she would not have given an option in the first place.
You have to go with what you think. Some people cannot bear the thought of any bits of cancer lurking but I believe that the surgeon would have removed anything that looked dodgy to start with so further surgery was unnecessary.
Good luck and keep positive.

hi there all, just letting you know after talking to the rads specialist and finding that my 1/4 infected node was ny sentinal node and none of the others around it so we have decided the best option for me is rads to chest, lymph nodes and coller area. If i had had more nodes involved from the snb then things might of been different. Just waiting for the call to go and have planning.
Thanks for all your advice, helped me to understand my options more before i went for the meeting.
Take care everyone, luv Pauline xxx

As you have had chemotherapy, it is possible to get a false negative result.

My breast tumour was flat rather than a lump and I was totally unaware of it. I went to my GP with a painful swelling in my armpit and my GP correctly guessed a breast cancer tumour in my lymph nodes. She got me into oncology that week for tests.

I responded well to FEC and the armpit tumour disappeared almost immediately and my breast tumour shrank to almost nothing. My surgeon recommended full removal of the lymph nodes under my arm because we knew I had had spread to that area and sampling might come back negative because of a very low concentration of cancer cells. He was right, the biopsy on my lymph nodes was completely negative! And despite the total removal, I had secondaries a few years later from escaping cells that had moved on prior to surgery. Possibly secondaries would have been sooner if the lymph nodes had not been removed.

I’ve had few problems with lymphodema except when I’ve had a bad bang on the arm or something. You don’t accept injections in that arm, a blood pressure test on that arm etc. unless totally unavoidable.