CT scans injections?

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GG27
GG27 Member Posts: 2,128
edited November 2016 in Lymphedema

hi all,

I had a BMX with nodes removed on both sides, I do not have a "good arm" I am on an Ibrance trial & had to change treatment centres. My new onc gave me a lecture the other day about how there is a new study showing that having injections in my arm for a CT scan absolutely will not cause lymphedema. I have a port which has been used for all my previous scans, but at the new centre they have to book the radiologist to administer the tracer & they don't want to do this & within the trial they will not allow me to have the scans at my local hospital where I never have a problem with port access.

I have only very, very mild swelling in the left & nothing on the right. I tried to get sleeves a few years ago but got frustrated by the process so I gave up & am just very careful. Do any of you allow for CT tracer in an arm? I don't want to be at risk just because I'm being "a difficult patient" but on the other hand I don't want to take any unnecessary risks. Your thoughts please. thx, dee



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  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2016

    Wow, Dee, that's a heck of a spot to be in! Lymphedema rots, so of course you don't want to take any chances. The study your doctor cited has caused some difficult situations like yours, and I'm sorry you're caught up in it. This was a preliminary study, certainly not definitive, and it flies in the face of a LOT of anecdotal evidence that injections, blood pressure and blood draws can trigger lymphedema. (Has this doctor read the study, or just the hype surrounding it?) And at the very least, any compromise to the skin where the potential for lymphedema exists constitutes a heightened risk for cellulitis.

    If it were me, I'd sweetly but firmly request that they book the radiologist and use the port. This is your call, though, and I feel for your reluctance to be seen as troublesome. Still, it's your arm, and your future. Lymphedema is forever.

    Aaaaak! Nobody should have to be in this position! Huge hugs,
    Binney

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  • GG27
    GG27 Member Posts: 2,128
    edited November 2016

    Binney, thanks for your thoughtful reply. Trying to reason with a Dr with anecdotal evidence is tough. She is a really good onc & I really like her. Part of me wants to just go along with it, because I do get sick of arguing with techs, Dr's & trial nurses at every turn.

    But like you & my DH say, it's my life that would be changed forever. I can't believe that I have MBC & still have to argue to get this done my way. I do let them take my blood pressure on my right arm & it hasn't been a problem so far. I only agreed to this because trying to get them to do it on my leg was just raising my blood pressure every time.

    Do you know what study she is talking about? I did google around a bit & tried to read something but the medical speak always makes my eyes cross. I'm going to call the centre tomorrow & see if the radiologist is still booked. They had booked him & then they had their little talk to me & changed the time of the scan.

    I hope others chime in as well with their thoughts as well. cheers, dee


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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2016

    Into had a UMX so do have a 'good' arm (with great veins) to use for draws/injection but there is no way I would allow an arm to be used if I had had a BMX. It's not worth taking a chance. If you still have your port, that can be used, and if it is a CA Center doing Trials, they certainly have RNs who can access a port.are ins in feet/legs that can be used as easy as an arm vein.

    Study - smudgy . it is our body and we have to be our own best advocate and protect ourselves. WE are the ones who will have to deal with/live with LE if it develops - not some 'talking head' Dr.

    You are not being a "difficult patient" to insist that either your port is used or vein on leg/foot, you are being pro-active for yourself. Unfortunately - so many Drs are really ignorant when it comes to LE. You might want to contact the place that is authorizing the 'trial' and explain your very ligitmate concerns. Stand your ground for YOU!

    (Totally OT - I see you are on Vancouver Is. - we used to live on Whidbey Island and from our house at West Beach, we could see the lights of Victoria.)

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2016

    Dee, their convenience is nothing compared to your well-being, physical and mental. You have been through a lot, and I think it is very reasonable for you to sweetly and firmly insist that they use your port for the injection. A couple ideas: Can you make an appointment for a port flush or blood test (for anything, even vitamin D level) at your local place, and have them leave the needle placed for the injection? You might have to go back there afterward to de-access. Or, if the new place doesn't want to book the radiologist, can they instead send a port-trained nurse?

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  • GG27
    GG27 Member Posts: 2,128
    edited November 2016

    SP, I am going to ask tomorrow when I go for labs at my old place if I could go there the day before & be accessed. At the Cancer Agency, they don't have any port trained nurses in the CT dept & for whatever reason they cannot or will not call one to come down one floor. I stood my ground the last time & they finally sent the radiologist in to inject. I was already accessed. I had to firmly insist that the accessed port be used for bone scan tracer as well, they did not want to do it. I have 3 procedures that day & don't want to have 3 pokes in my arm from 3 different dept's.

    Kicks, thanks for your words of encouragement as well. I wish I had a good arm. I got my port when I was discovered Metastatic. I have to have infusions every four weeks & just felt that it was too much of a risk that often, so yes, I still have the port. I seems odd to me that there is so much push back, especially because this is the Vancouver Cancer centre. Aren't there lots of us with ports? Or am I the odd duck because I'm bilateral? The onc said "oh you don't want it in your foot, that's very painful"

    I am just outside of Nanaimo on a small island. I can only see the mainland of BC from our vantage point. Must have been beautiful to see the lights of Victoria.

    thanks for the words of wisdom. cheers, dee

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  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2016

    Dee, the study appeared in the March 1, 2016 Journal of Clinical Oncology, and as is the practice, was followed by articles analyzing it--and in this case, refuting it's overblown conclusions. Here's the refutation, which you might want to share with your doctor in case he missed it:

    http://ascopubs.org/doi/full/10.1200/jco.2016.67.9...

    In short, the study says that only weight gain and infections have been shown to be risk factors for lymphedema. Which is in one sense true: those are the only factors that have been studied. No studies have been done of arm sticks and blood pressure causing LE, mainly because it would be unethical to purposely expose women to that risk. So it's not that this study (or any study) has found that needle sticks don't trigger LE in some women, just that no study has been done to prove it, and some women don't develop LE from it (at least not right away). By all accounts some do, but that was not part of this study. The conclusion: risk reduction practices should not be discouraged based on this study.

    You might want to contact bc.org member Nordy, whose LE flared in response to contrast fluid. This isn't rocket science.

    Wishing you real peace with whatever conclusion you come to!

    Hugs, (and I believe this dilemma calls for chocolate as well),
    Binney

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2016

    Dee, is your port a power port, i.e. power injectable?

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  • GG27
    GG27 Member Posts: 2,128
    edited November 2016

    Binney, thanks for the link. Perhaps this is why the onc is saying that I'm not at risk because I haven't gained weight?? not sure. But I do know that being on Ibrance is certainly a risk for infection.

    I agree, chocolate is the answer. Luckily we have leftover chocolate torte that I made yesterday. (I know, what the h*ll is leftover chocolate?)

    SP, yes it's a power port. Don't have a problem when I go to the hospital closest to me, it's just the Cancer Agency. Ironic?

    cheers, dee

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2016

    Very.

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited November 2016

    I feel your frustration. My cancer center is part of a large teaching hospital. There's only one nurse able to access ports at the radiology clinic. I've waited over an hour for her and had to go to a different floor to be accessed. It's ridiculous. I can't be the only patient with a port! I relented one time for a regular stick. It took him three tries. Never again.

    I make it a point for my oncology nurse to access the port before my scans. It's worth the extra hassle. I don't know if you have that option. Even though it's at the same hospital, they are miles apart. She just tapes it up and off I go. They can deaccess there.

    Compression garments are a pain. Some have to wear them 24/7. I wouldn't want to take that chance. I'd much rather I inconvenience them for a few minutes than me forever.

    Good luck!

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  • GG27
    GG27 Member Posts: 2,128
    edited November 2016

    Zills, today I have labs & I'm going to ask if I can be accessed a day or 2 prior to the CT. But they are different facilities, 6 hours from each other. I'm not sure if we can do that, but I am willing to do almost anything to not get a stick in my arm.

    thank you all for your input. My first inclination appears to be the one that I should try to stick to. I will let you know how this plays out. cheers, dee

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  • cive
    cive Member Posts: 709
    edited November 2016

    When they put my port in over 10 years ago, they didn't use it except for actual infusions. The thing got plugged and they had to use my arm for my infusions until they could unclog it. As a result I have no good veins in my off-side right arm. So they do all my bloodwork from the same side as my lumpectomy. My BS said she took all the nodes "she could" find yet I have never had a problem with lymphedema in over ten years.

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  • GG27
    GG27 Member Posts: 2,128
    edited November 2016

    thanks for your input Cive, I'm glad that you've never had a problem with lymphedema.

    I have approval from my regular place to have my port accessed the day before I leave for Vancouver, so today I just need to check to see if the radiologist is still booked for the scan. They are going to put in the special needle needed for CT contrast, but labs & my infusion can be done through it too.

    If I can't have it done through the port, I will insist upon a leg or foot stick, as a last resort in my less bad arm.

    thanks all! cheers, dee

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  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2016

    Good news, Dee--glad to hear it. Looking forward with you to smooth sailing on this. Let us know how it goes, please.

    Be well!
    Binney

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  • bevin
    bevin Member Posts: 1,902
    edited November 2016

    they should be able to use  vein in your hand or wrist . That's what they use on me for anesthesia. good luck.

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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2016

    Hand or wrist could still effect LE as it is part of the arm. Some have a lot of trouble with LE in hand/wrist - not all of us but some do.

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