2nd surgery includ. other side SNB-scared of LE

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cylander
cylander Member Posts: 18
edited June 2014 in Lymphedema

Hello ladies. Newbie here-though I've read these boards a lot. I am facing a high risk potential for LE situation here.

I was first diagnosed with IDC BC in the right breast in 2008, when I was 8 months pregnant. I had a right side Sentinel Lymph Node surgery, chemo, lumpectomy, and rads. I have just recently been diagnosed with a second primary IDC in the left breast and will be having bilateral mastectomies with immediate DIEP and left side Sentinel Lymph Node. Then chemo, not sure about rads yet. I will be having a 12 hour surgery and 5 day hospital stay, with the required IV and blood pressure monitouring.

 So for the past 3 1/2 years I have not let anyone stick a needle in or BP cuff my right arm, and now my Breast Surgeon is telling me I can have the IV and BP cuff on my right arm for surgery, and that my risk of LE is practically nonexistant. I am so frustrated that I was told to take precautions against LE, and now those precautions are being tossed out the window. WTF!!!

(So far, I have not been diagnosed with LE, but my right arm does feel a little sore sometimes and I get a "pins and needles" sensation. No swelling. It is my dominant hand, and I have had carpal tunnel syndrome in the past, pre-BC.)

 Along with everthing else going on, this is a little much to have to worry about too. Anyone else been in a similar situation? Any advice on what I can do to prevent LE as a result of this surgery?

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  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2011

    Cylander, what a tough situation!

    There is a huge movement to "debunk" LE risk reduction precautions, and that's what you're up against.

    The risk reduction precautions were never "proven" by rigourous studies, but they are based on clinical experience.

    The bottom line is that it is your arm and your potential to trigger LE, and you have to make a decision about what you will allow on that arm.

    Some women will only allow foot or neck IV's, and the blood pressure cuffs they use in surgery are automatic and tend to pump up to high pressures before they release.

    Are they going to put a port in? Could they use that for IV and blood draws and you can request manual blood pressures?

    I'm going to ask Binney to weigh in.

    Hang in there.

    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2011

    Cylander, welcome!

    How's your little guy doing?Smile Is he just about 3 now? It's a wonderful age -- expansive, but cranky! -- and I so hope you're able to enjoy him in the midst of the storm you're going through. Hugs to you both!

    Let me make some suggestions, but just please know that you need to do whatever you can handle right now -- if all you can manage is to get through the surgery, and if that means you develop lymphedema somewhere down the line, then we'll sure be here to help you handle that, okay?

    Anyhow, best of all possible worlds would be a visit with a well-trained lymphedema therapist right away, for baseline arm measurements and someone to consult with your surgeon. You need a referral from any member of your team, even you PCP. Here's a site for finding one near you:
    http://www.mylymphedema.com/therapist.htm

    You can insist on using your foot or neck for the IV (neck sounds worse than it is), and you should insist on either using a leg for blood pressure or else no automatic blood pressure on your arm. Here's a page of lymphedema information, written by a doctor for doctors, that you might want to copy off and discuss with your team:
    http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

    Lymphedema is a very crummy side effect of bc treatment, but it's only that: a side effect. It's not the main event, which is attacking that bc beast and getting rid of it once and for all. We're here for you, Cy. Tell us how we can help.

    Now go hug that little darlin' for all of us and share a laugh with him.

    Hugs, prayers,
    Binney

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  • toomuch
    toomuch Member Posts: 901
    edited July 2011

    Cylander - I can so relate to what you're going through. I had left sided lumpectomy, AND and rads and I have mild LE in my left arm and chest wall. I had ILC. I am scheduled for bilateral mastectomies and reconstruction this month. There has been disussion about a SNB on the right since once the breast is gone it will be too late. I had a mammogram. US and MRI and the breast looks good. Ofcourse, ILC is sneaky so there's no guarentee that it's not hiding there. But I'm taking my chances and skipping the SNB.  My IV will be in my neck and blood pressures will be measured only in my leg. My left arm will be wrapped with an LE wrap during surgery. I'm not sure if they will wrap my right arm too.

    BINNEY is right ofcourse. LE is just a side effect. There are days that I hate it but it is truly manageable and it sure as heck beats BC. It's hard since so many BS are in denial that LE occurs to their patients and they don't believe in the risks and precautions. If you have the energy, stand firm and insist that neither arm are be used for IV's or blood pressures. It is possible to have the surgery without either. I wish you the best and I am sorry that you are going through BC again.

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  • cylander
    cylander Member Posts: 18
    edited July 2011

    Thanks Kira and Binney! I really appreciate your comments and advice. It is so hard to get information from the docs sometimes. And my son is amazing-thanks for asking! He is almost 3 1/2, and super smart and funny! I cry every time I think of leaving him to go to the hospital. I've never been away from him for this long before. And it will be hard for him to not be able to climb all over Mommy after surgery. I really want the DIEP end result, but still wondering if I should go for TEs instead for the quicker recovery. And I'm currently losing belly fat from my lack of appetite, so I may end up a lot smaller than I'd like. Sorry to digress-my world is a merry-go-round of crazy life altering decisions and fears of disastrous outcomes.  

    I am going to try and see a lymphedema therapist before surgery. That is good advice. I want to do physical therapy anyway after mastectomy. The one closest to me in Los Angeles is MARY ROSENBERG, PT, CLT-LANA. I wonder if anyone on this forum has been to her?

     Foot or neck IV sounds difficult-I would love to hear from any ladies who have experienced this during mastectomy and/or reconstruction surgery. I am skeptical that my breast surgeon will go for that, or for the manual BP or leg cuff. Since it is a 12 hour surgery. While she is one of the top breast surgeons, she is not the most sympathetic person. (As my MIL says, surgeons are the type of people that prefer working with others who are unconscious : )

    I will probably get a port for chemo, but it seems like a bad idea to have something in my chest during breast surgery. Has anyone else used a port as IV for surgery?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2011

    Cy, I just went and looked up Mary Rosenberg. She is Vodder-trained in both the US and Germany (which is the lymphedema capital of the world!), and she's an instructor in the Norton school, which is one of the four schools (including Vodder) that fully train therapists. In other words, she's well-trained and current. Go for it!

    http://www.hollywoodpt.com/IntroStaff.html

    Hugs,
    Binney

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  • cylander
    cylander Member Posts: 18
    edited July 2011

    Thanks Binney. That's reassuring! I read Mary Rosen's bio, but it didn't mean much to me, so it's nice to have someone knowlegeable explain it! I hope I can get an appt. to see her before my surgery which is Aug. 3. 

    Toomuch-missed your post last time! I am so glad to hear from you since you are in a similar situation. Sounds like you are working with a sympathetic surgical team. I am considering the neck IV, and leg BP. Just not sure how it will all work. And how to make sure my requests are honored once I'm knocked out.

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  • cylander
    cylander Member Posts: 18
    edited August 2011

    Just wanted to give an update for anyone who might read this and is in a similar situation. I am 8 days out from my bilat mast/DIEP/left side SNB. Everthing went well-no complications so far. Also great news from pathology: clear nodes and clear margins, and no other tumors found. Recovery is tough of course. Can't do very much with my arms yet, and I try to keep them elevated on pillows when I'm resting-which is a lot!  

    I did meet with the LE trained PT a couple times prior to my surgery. She did MLD and helped fix some nerve issues I was having in my neck/arms that were causing some symptoms. She did not find any sign of LE, but did baseline measurements. Once I get the ok from my PS I will go back to her for MLD and exercises. Have to get drains out first. 

    In terms of the surgery, my PT recommended a pediatric IV in the right arm. She said that there is no research that proves needle punctures will cause LE. I'm sure this is debatable. I did have 2 pediatric IVs at different times during the surgery, one on my right hand, and one on my lower inner arm, but only towards the beginning of the surgery. (Not sure why-woke up with the bandages.) They mainly used my foot for the big IV. My surgery was 10 hours and required a large volume of meds pumping through. At one point post surgery, my foot IV failed-ouch! And they called in a charge nurse who put a new one in the same foot so expertly and quickly I wanted to kiss her! I wish I could arrange for her to do all my future IVs! 

    They only used my leg for the blood pressure cuff, but the readings are usually a little higher, and less accurate. Also more painful than on the arm. Oh well.

     So I guess I will try to maintain the foot for punctures, and leg for BP cuffs. Probably do a port for chemo.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2011

    Sounds like things are going well: you've certainly been through the max.

    I was happy to have my port for chemo (final set of infusions was yesterday so can proceed to DIEP fine-tuning next month).

    Continuing with PT for another couple weeks due to the ALND and got a sleeve for air travel.

    Best wishes for your healthy future! 

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  • lago
    lago Member Posts: 17,186
    edited August 2011

    I just had my exchange surgery 7 weeks ago. I have mild LE in my 10 node arm. My 4 node arm so far hasn't been diagnosed but I do on occassion feel heaviness no swelling. All through chemo they did do BP on the 4 node arm per onc's request. Afterwards I found that they can get a good reading on my ankle (not leg) so now I have them do it on my ankle when I get Herceptin or anything else.

    Back to my exchange surgery. The IV was in my foot. I also had the IV in my foot for port surgery as well. There is a slight increase risk of infection with doing it in your foot. Also if they can't get an accurate BP in your ankle or leg then they will have to use your arm. This is really a matter of life and death. They really need to monitor your BP when you are under anesthesia.

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