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Advice 15 years out

udpt82
udpt82 Member Posts: 12

I was diagnosed with invasive lobular carcinoma in 2008. I had a bilateral mastectomy and lymph nodes removed (a few did test positive). I underwent chemo, radiation and reconstruction. Unfortunately, my original reconstruction with implants failed and so I then had a DIEP flap.

I do not allow blood drawers, IVs or BP on the involved arm. Recently, I had foot surgery and the anesthesiologist nurse said that is not the current theory, but did respect my wishes. I also wear a compression sleeve when flying.

Can anyone tell me if there are new thoughts, especially this far out from surgery? Years ago, I thought I read that there was still a risk of lymphedema even 20 years post-op, but could be wrong. Also, the surgeon who did the DIEP flap said that this type of reconstruction decreases the risk of lymphedema.

Are people still using compression sleeves when flying? Should I still not allow needle sticks or BP on the involved arm? (Both even though I am 15 years out?)

Thanks!

Comments

  • moderators
    moderators Posts: 7,694

    Hi there, @udpt82!

    Until other members post with their own experiences, we wanted to recommend the following article. It is not exactly your case, but you might find valuable insights and information that could be relevant to your situation:

    Wearing Compression Sleeves Preventively May Reduce Lymphedema Risk After Breast Cancer Surgery

    Hope this helps!

    The Mods

  • trvler
    trvler Member Posts: 931
    edited November 2023

    This might help you. I am 8 years out and I have never had any issues with lymphedema I no longer wear the sleeve. I do not allow anyone to massage that arm, stick that side or do bp cuffs.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3652571/?fbclid=IwAR2vHScSjjnu3nmyF_OFDgzsfcrMmSc7HMFjIRQIHx5GbL4xAFr1C7LU0xQ

  • ruthbru
    ruthbru Member Posts: 46,727

    I'm 16 years out. I never had issues with lymphedema either. I don't wear a sleeve. When I fly, I make sure I'm well hydrated, take my rings off, move my hands & arms a lot, get up & move around the cabin etc. I usually check my luggage so I don't have to be hoisting heavy things around.

    I don't get massages or manicures. I get shots, IVs', BP cuffs etc. in the other arm. I wear gloves when I'm gardening, wear sunscreen, bug spray when I'm out in nature etc. I do exercise, which includes light weights because I think that helps keep your lymphatic system healthy & keeps everything flowing as it should.

    After being so freaked out at the beginning, I rarely think about it anymore.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,650

    I actually have very mild lymphedema. I wore a sleeve while flying for many years but have not worn one on my last several flights because of current recommendations. I still do not have bp or needle sticks in that arm but do get manicures. Hydration is important and I also do manual lymphatic drainage, particularly if I feel fullness in my upper arm (though it is not visible, I do feel it occasionally). Any surgery, and certainly reconstruction, can lead to lymphedema and unfortunately there is no way to predict who develops it and who doesn’t. Please consult your own lymphedema PT to find out what is right for you.

  • laughinggull
    laughinggull Member Posts: 509

    I am 6 years out, and still avoid IVs, shots and BPs in the cancer-side arm. I will keep doing it, because it is very easy to do. Every time I get one of those things, the technician asks which side, so it's extremely easy to point them to the other side. I am also careful with cuts and mosquito bites and apply disinfection and antibiotic immediately. At this point is like a reflex so I will keep doing that.

    I never wore a sleeve when flying. Before my cancer surgery, I had a consultation with a lymphedema therapist, and they told me there was zero evidence to recommend that. They also took baseline measurements. My weight is kind of in the low side, and I am very active and swim regularly. I was told that my risk of developing lymphedema was low, despite having had all my nodes removed from my cancer side, but that there were no guarantees. And that a flare up was more common withing the first five years, becoming more unlikely the more years passed, but it could still happen.

    I would recommend talking to a lymphedema PT. In my cancer center there is also a lymphedema clinic where some machines take your measurements and they keep the record, so I also do that.

    Congrats on being 15 years out!

  • beckymd
    beckymd Member Posts: 24

    I am 26 years out from my original mastectomy. I do not have any lymphedema, but I still do not allow any needles or bp in that arm and am always careful with it. I usually don't think about it too much, but the medical staff always ask which arm to avoid. My Mother had breast cancer years ago - yes, her surgery was very aggressive. One day in her office she had a finger prick from a staple. It became infected overnight, and she was hospitalized the next day. She was never told anything about lymphedema. Thankfully, she lived until her 80s and did not die from cancer, but she suffered terribly with lymphedema the rest of her life. Although doctors have told me the risk is low, I'm still careful.

  • vanisland
    vanisland Member Posts: 2

    I'm 19 years out from my surgery and have always taken precautions. This last year I have now got lymphedema and was just fitted for a compression sleeve and gauntlet. The physio I have seen for lymphatic drainage massage has been wonderful and has advised me to wear the garments when at home or out doing exercise/walking/errands and of course, flying. As I'm very early stage I'm hoping that all this is more preventative so as not to allow it to advance. I find doing the massage morning and evening works really well and I can already seen the results of the swelling going down.

  • moderators
    moderators Posts: 7,694

    Hi @vanisland and welcome to Breastcancer.org!

    19 years out is wonderful news! We're sorry to hear about the lymphedema, but it sounds like you're on top of it, with the help of your medical team. In case you would like more information, these pages from our main site might be helpful:

    We hope this information is helpful. Please let us know if there's more we can help with and welcome again!

    —The Mods

  • lastar
    lastar Member Posts: 551

    I had mild LE after my initial MX in 2012. When I had complications and DIEP in 2015, my LE got worse and spread to my breast and torso (I can't imagine why anyone would think that more surgery is better for one's lymph system). My LE has more recently gotten worse, causing two cases of cellulitis in October. These issues cause me to stay vigilant. My experience is that very few health care professionals seem to understand the nuances of LE and I don't think it's well-tracked over time or even treated as much of a serious issue relative to the effects of cancer. It causes me discomfort, and cellulitis is now a new cause for concern. I don't know if you are home-free because you never had LE to begin with, but I certainly hope so.