Hi All,
I had primary Breast Cancer back 16 years ago which meant I had a lumpectomy with node clearance. This left me with Lymphodema in my right arm
I have now been diagnosed with mestastatic breast cancer, in my spine ( causing spinal compression ( I have lost 3 inches in height as the spine in broken and they cant fix anything) and its also in my left armpit lymph nodes that means I now have lymphodema in my left arm as well.
I recently ended up in hospital with cellulitus in the left arm. This caused all manor of issues as they couldnt canulate the right arm due to the lymphodema so I ended up with a very unsucessful canula in my foot, followed by one in my leg in an attempt to get antibiotics in to me. In the end they begrudgingly gave up after one day I had 12 people prod and poke my legs and feet to get a line in.
Now out of hospital my lymphodema nurse advised i should not have bloods or blood pressure or canula out of either arm. This is causing massive issues for me.
One doctor just said ’ I am going to put this in your arm anyway as there are better veins there’ , the nurse at the GP tried my feet but touched a nerve giving searing pain in my toes. She the used my arm then anyway. I have been left with extreme pins and needles on this foot and I cant bend my foot and its constantly swelling. So I guess she has damaged my nerves permanently?
Has anyone else had this issue and how did you deal with it? I am still having treatment as my cancer keeps spreading and nothing is working at the moment. As a result i need regular blood tests and CT scans with contrast.
I did as the nurses at the oncology unit and they said they would simply carry on using my arms as its easier .
Any suggestions or help gratefully received. Thanks x
Can’t offer any advice or suggestions but just wanted to send you a hug as it sounds like you are having a pretty miserable time Might be worth ringing the Breast Cancer Now nurses helpline see if they have any suggestions ?
Hi.
Sorry to hear your situation. My only suggestion from personal experience, would be to ask why you wasn’t offered a PICC line, as you have further blood tests and intravenous treatment to come. It would involve having an outpatient appointment to insert the PICC line into your arm, but there would be no more bruising or nerve activity from the needles in your veins.
At least that would be one worry off your mind.
Hi Concerned75,
Thanks for the response. I can see what you are saying could be a solution. However, they wont give me a PICC line as the treatment I have is tablet based along with injections in to my bottom. I think the risk of infection simply for blood tests is considered too high to have one fitted.
Thanks Jill1998,
Thank you for your message.
I will give the nurses a call and see what they say. Might wait until tomorrow as I have scan results on Tuesday to see how far this horrible thing has spread (we know from the tumour markers that it has) as that may change everything.
Finger Crossed its not too bad
Oh drew, I am so sorry to hear what a really rotten time you are having . I’m angry too that your team seem to want to do what is easiest for them rather than what is more comfortable and better for you. You will always be on some form of treatment as you have mets,this will also mean blood tests and scans (as you know)
Can you ask about a port- a -cath? I know you say you are on tablets but the stress and pain and possible complication of cellulitis due to using your arms for bloods etc should be taken into consideration. A port is under your skin and yes there is still a possibility infinfection but very rare if proper care is shown when using them. I have a port and my bloods, contrast for CT and infusions are all done via the port.
I wish you luck
So sorry that you are experiencing all this - I would look into the Port-a-cath as @JulieD suggested as there is no line in your arm with this. Research it thoroughly before asking and decide if you want to try it or a Hickman line. I have seen it used successfully in clinical practice though not for some time as more commonly we use PICC lines. . Perhaps you could get your Lymphoedema Nurse to advocate for you with the surgery and Oncology Dept. especially after the issues with your foot and cellulitis in your left arm. It doesn’t sound at all unreasonable to me for them to look at giving you a permanent line . I work within a hospital Theatre Dept . and we take blood pressures using the leg fairly frequently especially during arm surgery if that helps at all . A very large cuff is needed if using the thigh but if it’s being taken on the calf a Medium ++ often fits - that’s a size that we always have in stock though in some clinical areas they don’t seem to have a full range of sizes.
I would suggest getting your foot looked at to see if anything can be done - they may feel that your symptoms are related to your cancer or other treatment though with the history you have given it might be worth having a vascular assessment. I would also second Jill’s advice to talk it through with the Nurses on the helpline .
Fingers crossed for your results tomorrow Drew . Xx
I see. I thought there might be a good reason within your treatment not to have a PICC line.
Then its best as others have said to discuss with the breast care team.
Hopefully, you can get a suitable solution, fingers crossed.
I am so sorry to hear about the problems you are having.
In August 2023 I had a mastectomy on the right side, during chemo (Red devil) the veins in my left arm collapsed and so they decided to to a port in which I now still have because I developed lymphedema in the right arm and now have secondaries on my lung and behind the mastectomy scar.
Quite honestly I wouldn’t be without the port as it makes the weekly routine blood tests and chemo much more bearable as there isn’t now a performance to bet the needle in.