Advice after Lymph node removal please

[Xinte]

I had a radical mastectomy 11 years ago and had all lymph nodes removed from the arm on that left side. I was told, no blood pressure, no needles or IV on that arm or hand, and if I were to injure that arm or hand, to get antibiotics asap. Over the years I have managed to follow these instructions and keep my arm safe, however after asking many medical professionals, their answers and opinions vary massively on whether it is ok to finger prick on the non lymph node arm, being a type 2 diabetic using insulin, I have now lost a lot of feeling and sensation on the fingers of the right arm through constantly use. I would really love to know of any ladies that have had all lymph nodes removed and used that hand for finger pricks without any ill effects. As I am right handed I am quite worried that I am losing sensation in the fingers of my dominant hand, especially as a crafter, my current Diabetes team say avoid left arm but oncologist team say its no problem, AST is not an option as readings are way off during hypos, love to hear your experiences, TIA

 

[In Response]

I cannot answer your questions about finger pricking on your left hand.
But I am concerned about your loss of feeling and sensation on your right hand. After nearly 20 years of Type 1 with regular finger pricks during that time (often 10+ pricks per day), I still have normal feelings in my fingers despite having Reynaud's since childhood which has made finger pricking challenging at times, Sure, I use both hands but I am surprised anyone would put your current experience down to finger pricks alone. If I was in your position, I would push for more investigation why you are experiencing feeling loss in your finger tips. It sounds odd to me.
If you need to give your right hand a rest, I wonder whether a Libre would help. In the recent NICE update, the recommendation is that these should be prescribed to everyone who is treated with insulin. This is only a recommendation so you may have to be pushy to get them and it will not remove the need for all finger pricks but it has reduced my pricks from 10+ times a day to only twice which should give your right hand fingers some rest-bite without risking your left hand.

 

[Lakeslover]

I also have no lymph nodes under my left armpit and have been told not to finger prick my left hand.

A year ago I started using the libre (on my right arm only). I have found it has considerably reduced the need to finger prick. I usually do a couple of times to check a new sensor is working, and then only to double check if I get a hypo.

I would have thought that as well as using insulin your problems with only being able to use one hand would be a good reason to get the libre on prescription (I self fund).

 

[Xinte]

Thank you both for taking the time to reply, I appreciate it. I feel reassured that my natural inclination not to use the affected arm is correct and I would really like to try the Libre but my GP has point blank refused it, stating that it is only available for Type 1's, but if the NICE guidelines have now changed to including insulin dependant, I will certainly be following that up, thank you (In Response) but I feel I will have a fight on my hands. excuse the pun haha, I have a feeling that although the constant finger pricking on my right hand hasnt helped the numbness,pain in my fingers, the lack of Diabetic checks and appointments for almost 2 years during the pandemic when my readings were anywhere between 25-30 has contributed to nerve damage too.. Still in the process of titrating new (to me) basal insulin Tresiba and appointment next week to start bolus, so more finger pricks, oh joy! thanks again

 

[Nicki70]

I had my lymph nodes removed (right side) 9 years ago. The NICE guidelines then were to avoid any injections etc in the arm on the side that the lymph nodes were removed. However, the NICE guidelines were updated a few years ago and now state that you can have injections, blood pressure etc done on the side where no lymph nodes.
I had a reoccurrence of my breast cancer last year and have had and still do have treatment which include regular blood tests. My right arm has visible veins and my left does not and has never been easy to draw blood from, so the nurses in the oncology unit happily use my right arm, but I have found in other departments that are not always so up to date with the change in the NICE guidelines and are still cautious about using my right arm.

 

[Nicki70]

Another thought - are you on any hormone therapy tablets, such as letrozole or anastrozole. They can cause tingling and numbness in hands as a side effect.

 

[LaoDan]

Hi, my freestyle lite came with a map of alternative sites. Not sure if it’s applicable to you, but here it is

 

[Xinte]

I wrote out a big long reply last night, but strangely it seems to have vanished! Hi Nicki, I too had cancer in the other breast, this time not ER+ so just a simple mastectomy, no lymph nodes involved,, have Multiple Myeloma now, the gift that keeps on giving eh! haha, I was on letrozole for 10 years and although it gave me carpal tunnel syndrome, this feeling in my fingers is completely different. Phoned my GP practice today and they are still saying No, even though I referred to the new NICE guidelines, they say, under those guidelines I would have to be referred to an Endocrinologist who could then bypass NICE guidelines and prescribe the Freestyle Libre, and that I'm not at the stage yet where they need to refer me. I'm not sure where I could go next to plead my case. I'm really interested in the new rules that say its ok to use lymph node clearance arms, but also still very wary, I remember years back, two occasions , one where I inadvertently got sunburnt on my arm, and secondly I fell and grazed that arm, both times the arm swelled up to twice its size and I got cellulitis and had to have IV antibiotics in hospital.but I can see that finger pricking using sterile lancets would be completely different, my medical notes still say, no IV,bloods or BP left arm........ Thanks LaoDan, I have found in the past that using the AST gives quite different readings than fingers, do you find that too? Thanks again for your replies

 

[LaoDan]

I wrote out a big long reply last night, but strangely it seems to have vanished! Hi Nicki, I too had cancer in the other breast, this time not ER+ so just a simple mastectomy, no lymph nodes involved,, have Multiple Myeloma now, the gift that keeps on giving eh! haha, I was on letrozole for 10 years and although it gave me carpal tunnel syndrome, this feeling in my fingers is completely different. Phoned my GP practice today and they are still saying No, even though I referred to the new NICE guidelines, they say, under those guidelines I would have to be referred to an Endocrinologist who could then bypass NICE guidelines and prescribe the Freestyle Libre, and that I'm not at the stage yet where they need to refer me. I'm not sure where I could go next to plead my case. I'm really interested in the new rules that say its ok to use lymph node clearance arms, but also still very wary, I remember years back, two occasions , one where I inadvertently got sunburnt on my arm, and secondly I fell and grazed that arm, both times the arm swelled up to twice its size and I got cellulitis and had to have IV antibiotics in hospital.but I can see that finger pricking using sterile lancets would be completely different, my medical notes still say, no IV,bloods or BP left arm........ Thanks LaoDan, I have found in the past that using the AST gives quite different readings than fingers, do you find that too? Thanks again for your replies

Actually never used an alternate site for long periods. I think I would start by pricking both for some time and see if the difference is consistent enough. If so you’d only need to add or subtract the difference.