Risk of getting it?

I had four lymph nodes removed in April. Am I right in thinking that the more one has removed, the higher the chance of developing lumphodema is? Or are the numbers irrelevant?

If the numbers are a factor, what sort of risk level would I be at?

Helen

Hi Helen

I think the general consensus is that the fewer nodes you have removed, the better, from a lymphoedema point of view. However, there have been cases of lymphoedema following only an SNB.

The number of nodes is not the only risk factor. Having radiotherapy can increase the chances of developing lymphoedema. As does being overweight or diabetic.

Lymphoedema is poorly understood. It still remains a mystery as to why some people who have all the risk factors going do not get it while others who would appear on the face of it, to be much less susceptible do. It’s a rather cruel lottery. For myself, I suspect that much depends on the robustness of an individual’s own lymphatic system. (And possibly the skill of the surgeon).

My own opinion is (as a sufferer) is that there are some people who will never get it, no matter what they do or what is done to them. I also believe that there are some people who are going to get it despite their best efforts. And finally, I reckon that there is an in-between group who can avoid it, at least for a time, possibly forever, by taking as much care of their arms as possible.

Unfortunately, none of us know which group we are in until we get it! And we can never assume we’re in the first one!

I’m not sure, but I would guess that it’s perhaps not a question exactly of how many lymph nodes are taken away, but also how many you’ve got left afterwards.

Hope I haven’t rambled on too much…

X

S

Thank you!

I’m very cautious about it - treating cuts etc. A recent bite was treated with anti-biotics (I always react badly to bites and sod’s law it was on my affected arm, despite wearing Veet).

hi baggy i had only 4 lymph nodes removed after right sided BC in 2006 but have had problems with cording, thrombophlebitis, cellulitis and lymphoedema of my hand.

everybody has a differnt number of nodes so although its usually around 20 some people may only have 10 where others may have 30… so perhaps the risk may be in relation to the number you have (not research based merely speculation)

or sometimes the nodes that are removed are the ones that would normally do all the work so when they are removed the others cannot cope.

i only had one node out on the left side after a new cancer this year so consider that to be my good side in terms of lymphodema but having chemo and not happy getting needles in either side and hoping to speak to my onc about getting a central line put in before next chemo as they have already b*ggered up the right side putting needles in and now worried about the left.

im def of the view of being over cautious rather than waiting for something to go wrong and then having to deal with disaster management.

Thank you Lulu - there’s never a definitive answer, is there?

Helen
xx

I went to a lymphoedema session recently and I distinctly remember the presenter saying it did not matter how many lymph nodes you had taken away, the risk was still the same, however radiotherapy and having hypothyroidism presents more risk of contracting lymphoedema. I have hypothyroidism and had a bilat mast and had a SNB on the right side, where I believe they took 3 nodes, but also one node came away which was contained within the breast, I did have radiotherapy on that side. I started to get lymphoedema in the right hand, but saw the lymph nurse and she gave me exercises to do. I do all my exercises every day, even twice a day if I have the time and I moisturise at least once a day (bit paranoid now) and I seem to have it under control.
However I still worry about getting BP, bloods, etc taken from my left arm,I did not have any lymph nodes removed from the left side but once again one node which was contained within the breast came away.
My daughter who is a HCA is taking my blood pressure every week and she takes it from my leg, from the calves, but I am not convinced that this is accurate. I think its supposed to be done in a prone position (facing down) and from the thigh. My blood pressure is showing to be high. I am quite concerned about this and am wondering about wrist BP monitors, any advice on BP wrist monitors please?
Angela x

hi angela wrist monitors are probably just as accurate as a calf measurement… also if your concerned about lymphoedema then having yoru bp taken round your wrist is just as likely to cause it as it still puts pressure on your lymph system… and as you know lymphoedema often starts in the hand.

if your worried about your bp you can get bigger cuffs but it can be taken from any limb… you would prob be advised to check with your gp if its more than 140/90.

Hi Ang

Lulu is absolutely right, I reckon.

I have bilateral lymphoedema and my GP always uses my calf to take my blood pressure. He is aware (see below) that it is likely to read on the high side and is, I think, only really checking for signs of an upward trend.

I find thigh cuffs uncomfortable and it’s perfectly possible, with an automatic device, to put an arm cuff around the lower calf and take a reading from there.

I believe to get the most accurate reading from a leg you also need to be laying down for about 5 mins beforehand - can any of you medical ladies confirm?

However, when I got lymphoedema in both arms a few years ago, my then GP wrote to a local cardiovascular consultant asking for his advice on taking BP on legs. I asked her for a copy of his reply as I thought it was very useful to carry with me for hospital visits/stays.

Here’s what he wrote:

‘It should be possible to monitor her blood pressure measured at the ankle. This can be checked by putting a cuff around her thigh and listening in the popliteal fossa (for non-automatic devices). Generally blood pressures measured distally are around 10 mmHg systolic higher than centrally measured BP. This is because the pressure wave form changes on passing into smaller arteries, in much the same way as waves become higher and steeper when they pass into shallow water’.

So a BP reading on a thigh or calf will always be higher than when taken on an arm.

But I’ve been wondering if a wrist monitor could be used at the ankle/calf. Anybody tried that?

X

S

you could get somebody without lymphoedema to take it on the wrist and recheck it on the ankle and that should give you an idea if there is a difference and how much it is… prob best to check it 2 or 3 times to get an average.

great idea lulu think I will get a wrist monitor and get my daughter to check it on herself, on her wrist then on her calf, see what the difference is. I also think if I had one at home it may show a more accurate reading…white coat syndrome and all that…although I am not aware that I have white coat syndrome. I will have to see if the cuff is big enough to go around my ankle. thanks for your advice
angela x