Hi Seaspirit,

I have had two bouts of primary breast cancer. The first time I had a lumpectomy and the second I opted for a double mastectomy. I had level one clearance of lymph nodes the first time on my right side (6 nodes), but all were clear. When I had my double mastectomy my surgeon took some tissue, but it turned out to be fatty tissue and not lymph nodes.

Some months after surgery, my left hand swelled up and I was diagnosed with Lymphoedema in both arms. I attended courses on how to cope with this myself, but found it difficult to bandage myself on both arms. I now attend a lymphoedema clinic for 2 weeks out of every 12 weeks. I started off having drainage via a machine, but it wasn’t effective for me. I now have manual lymphatic drainage and compression bandaging. This is applied twice a week for two weeks. The bandaging is very restrictive for these two weeks and I look like the Michelin man with these big white bandages on both arms.

In the ten weeks between my visits I wear elastic sleeves. I have had terrible trouble finding a pair of these which doesn’t dig in at the top of my arms, but which still gives me compression and support.

I know exactly what you mean about having trouble getting your blood pressure taken. It took me a few years before I found a liver specialist nurse who could take bloods from my feet. He can also give me injections, take my BP, put in a line, etc from my feet. Finding this nurse has been a godsend. Prior to discovering him it was a nightmare trying to get any of these procedures undertaken, but he is so obliging in fitting me in when doctors want blood. When he takes bloods in the morning, he phones me in the afternoon to let me know the results. Finding blood from my feet is not always easy, but he places my feet in a basin of hot water and is so patient until he eventually succeeds.

Most health care workers, and this includes both doctors and nurses do not appreciate how important it is to avoid carrying these procedures out in my arms now. Many have tried to persuade me to have it done in the arms on a one off basis, but I have been advised not to succumb to these suggestions. You should not allow anyone to take blood from your arm. This can all be done from your foot, provided that you can find someone who knows what they are doing. It is more painful to have blood taken from the foot as opposed to the arm, but it is better than causing further swelling.

I have had lymphoedema for 5 years now and the swelling seems to fluctuate from one visit to the next. My nurse doesn’t seem to worry that it is not getting much better. He is more concerned in assuring that it doesn’t get any worse. I have encountered very little understanding of lymphoedema amongst the medical profession and feel that more education is needed in this is an area.

What has your experience been?

Jolamine xx

Thank you Jolamine, you are the first person I have found who has similar problems to me. I had breast ca in 2009. I had a primary in each breast, with a possible small second primary and DCIS throughout the left breast. I had bilateral lumpectomies and lymph node sampling at first, followed 2 weeks later with a left mastectomy and bilateral axillary clearance.

I went on to have 6 months of chemo, then 3 weeks' radiotherapy on each side sequentially. I had a bit of arm and hand swelling, and got sleeves and gloves for both sides which I wore when flying, when I got an insect bite, and in hot weather. I had developed hypertension during chemo and had my BP taken in the foot, and it was consistently high. My lovely GP used a Doppler and old fashioned sphygmomanometer,which made it more accurate. He also took bloods from my foot when needed.

My problems really started when I attended an NHS hospital in Aug 2016 for Botox injections in the bladder,( I have overactive bladder) They did not understand about having to use my foot, my BP went sky high, and I was bullied by the theatre staff. Very traumatic.

Then I was diagnosed with ca colon in Jan this year. They were very good putting drips in my foot at first, and getting blood, but my BP went higher and higher. Eventually I asked to be referred to a cardiologist, a wonderful man who showed me a paper from Harvard showing that BP and blood on the arm were OK as long as it was done properly. My BP was fine taken in the arm, and he said the electronic BP machines in Hosp were grossly inaccurate in the foot.

So I was admitted fir my anterior resection in an NHS hospital. They were wonderful. A consultant anaesthetist put the drip in my foot, and a doctor took the blood from my arm. I had a central line put in in theatre,and

afterwards in the HDU they took bloods and gave injections through that. I have to say though, that despite their wonderful efforts they did not understand my level of anxiety about this, no one has except the lovely cardiologist. Postop my arms and hands swelled a lot, and I needed to wear my sleeves. They got an anaesthetist on call to reassure me that it would be OK, as I had a radial artery needle to monitor my BP. So kind. I wore my sleeves, and the swelling has slowly gone down.

Now I may have to have chemo, and going back to the same chemo unit I went to before they did not seem to understand, and they point blank refused to take blood from my foot. I had it taken from my arm, and put my sleeve back on immediately, and have been OK. I found myself in tears in the clinic. They thought I was worried about the chemo, ca, etc, but it was the  risk of worsening the lymphoedema that was upsetting me.

I am more fortunate than you, as mine is very minor. I am so glad you have found someone really competent and kind to manage your venous access. I belong to the Lymphoedema Support Network, and find this very useful.

Good luck, and jeep in touch, Seaspirit xx

Hi Seaspirit,

Your experience of hospital staff, who should know the consequences of working with an arm that has lymphoedema but neither know nor care sounds similar to my own. I have had consultants referring me to nurses to have my bloods done, nurses refusing to take any because they are not trained to take it from the foot. Referral to gastroenterology, then refusal to do it there either and eventually having a very annoyed consultant trying to do so himself and failing.

My GPs practice will not take bloods at all. I have to see the nurse in the hospital to get this done, but at least I now know who to call upon. There is no doubt at all that the old fashioned sphygmomanometer is much more accurate than any of the newer monitors. At one stage my Cardiologist tried to see how much higher my BP was when taken from the foot as opposed to the arm. The nurse started with a brand new  all singing all dancing monitor which gave me a grossly elevated BP. The cardiologist then tried to test on arm and leg with an old fashioned sphygmomanometer with a large cuff and then a small cuff, the original new monitor and another electronic monitor. He eventually came up with a figure, which was higher for the leg.

This theory lasted until the following day when I was at another hospital and all that theory was overturned. Do you see anyone for your Lymphoedema - if so, perhaps they could write you a letter stating that everything should be done from the foot? If you don't, could you get a letter from your cardiologist before you go back to hospital for chemo?

I have had so much bullying over this from medical staff that I have found it quite upsetting. At one stage, they even tried to convince me that you couldn't have your BP taken from your foot! I now carry letters from my GP and lymphoedema nurse  outlining my medication, as some of these are controlled drugs and not on repeat prescription. I have another one outlining the fact that I have had a double mastectomy, 2 knee replacements and lymphoedema. With all this before them in black and white it seems to bear more weight than it did when I just told them about it.

I have found that it is easier to bring the lymphoedema up in advance of getting any procedure done. More attention is paid to it then and it is taken more seriously.

I am supposed to wear my sleeves all the time with the exception of the two weeks when I wear my bandages. I don't always do this, as they do tend to cut in at the top of my arm and I'm convinced that wearing them has given me bingo wings that I never had before, but I do try to wear them as often as I can.

I hope that you can get all this sorted if you have to have chemo. The problem with taking someone's word about  injecting into the arm is that you don't know how good the doctor is at doing this until it is done. If you develop further swelling after that it is too late to change things. My Lymphoedema nurse is very insistent that I don't have any procedures in my arm, so I am too.

I shall be off line for the next couple of weeks, but shall be thinking of you and will be back to check your update as soon as I am reconnected.

Kind regards,

Jolamine xx

Hi Jolamine, 

I did reply, but it seems to have gone into the ether!!

Your experiences sound truly terrible. No wonder we have extra anxiety and upset.

I have an excellent nurse, who measured me for the sleeves, but I don't need to see her very often as fortunately my condition is mild.

I an having a radioisotope scan today. I was welcomed by a doctor, who deftly inserted the cannula into my foot, followed by the injection of Technitium99, with no problem whatsoever. Such a relief. I have to say that when I was in sn NHS hospital for my major op there was no problem. Drs took my blood, and anaesthetists set up drips in my foot and neck.( my care is a mixture of private and NHS )

It was here at the pvt hospital oncology unit where the p  have been. I cannot believe the attitude of the very experienced sister who looked after me so well last time. She told me to have blood taken from the hand!!!! This is very like to cause bruising and infection as they poke about, and is no different from the foot. Last time the breast oncologists were in charge, and I had a Hickmsn line in my chest, si the problem did not arise. 

This time the phlebotomist went into the wrong vein, and went through it do I got a bruise. Not good, thi no swelling thanks to my sleeves.

I will take your advice abd get letters  from the cardiologist and breast syrgeon.

Do you have probs getting sleeves?

Take care, lots of luck,

Seaspirit xx