Lymphedema without Node disruption

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QueenB44
QueenB44 Member Posts: 27
edited April 2019 in Lymphedema

I posted recently to ask if anyone had lymphedema without their nodes removed or biopsied aa I understand this is very uncommon.

I had a lumpectomy Dec 2018 for Stege 0 DCIS so biopsy was not necessary. Last month my surgery side arm started to swell after light gardening. Afraid of a blood clot I went to the ER and had an ultrasound. No clot. I was diagnosed last week with mild to moderate Lymphedema by a certified Lymphedema therapist.

This whole thing is so strange. I don't even know how I'm supposed to feel other than angry that I'd like to not have to now deal with this. I

At this time I have intermittent light swelling, pain, jabs in my armpit. I was fitted for a sleeve which should arrive late next week. Any advise and support would be appreciated. I also have to travel in three weeks. Yikes!

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited April 2019

    It sounds like you are in touch with your body and got seen quickly by an appropriate specialist.

    Any trauma to an area such as a surgical procedure can set the stage for LE. I like the description of our lymph systems being like the roads on which we drive our vehicles - some people have an eight lane super highway whereas others, like myself, resemble a dirt track.

    Check the website www.StepUp-SpeakOut.org for lots of good info. Is your upcoming trip by air?

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  • QueenB44
    QueenB44 Member Posts: 27
    edited April 2019

    Thank you. I've been on the StepUp-SpeakOut.org site. It has great info and even discusses LE caused by scar tissue and surgery without Lymph Node disruption.

    I will be flying by air and have been told by my therapist that I shouldn't have a problem providing I wear my sleeve. This trip will be about 3 hours and I have another one in June that is about the same time.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited April 2019

    So you're probably aware of doing things like hydration, elevation and fist pumps to keep lymph fluid moving as much as possible. Also be careful lifting luggage. I like to get to the airport early, check baggage rather than hoist it into the overhead compartment and don my sleeve after getting through security. Do you have a glove or gauntlet for hand protection?

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  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited April 2019

    QueenB44    Was your lumpectomy on the outer side of your breast?  It is not uncommon to have lymph nodes in your breast tissue in that area.  I know I do, as some showed up my MRI. Perhaps one was taken out with the lumpectomy unintentionally.

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  • QueenB44
    QueenB44 Member Posts: 27
    edited April 2019

    Yes, most I'm aware of. I'm learning every day. My Lumpectomy was just underneath my nipple. I had a ton of swelling and fluid for quite awhile. I know that there are lymph vessels in the breast.

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  • Wised
    Wised Member Posts: 351
    edited April 2019

    Queen bee, I also had a lot of swelling from a hematoma after my surgery. I think that triggered the LE.

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  • Longtail
    Longtail Member Posts: 25
    edited April 2019

    Lymphedema, neuropathy, & the under-skin torso thickening, all on my left side, are the absolute worst thing about my MBC. Doc said neuropathy is cumulative, from chemo. Well, I had 14 of those in '18. The lymphedema is worsening just because my compromised lymph nodes are under my left armpit...guess they're getting smushed from the thickened skin tissue under the skin. Apparently none of it will go away, at least not in my expected lifetime. my MBC manifested in my spine - which chemo controlled - and then I got this lovely cancer in my skin (not to be confused with skin cancer), also on my upper left torso. Strange thing is, you usually don't get the lymphedema and/or 'skin' breast cancer unless you've had surgery - which I never had. The right side of me feels great - almost 100%, and the left side is causing me nothing but horrible side effects. Then again, I was diagnosed with stage 4 right out of the gate, no symptoms, family history, good mammos, etc. Just one of those things....I've had 1 1/2 pretty good years since diagnosis - yay! - and so far can still do for myself, drive, etc....however, the neuropathy is getting so bad, my left hand is pretty useless at holding things. OK, rant is over!!! Am now on a cancer trial drug -- am stable-ish -- but can't take much more of this arm stuff.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2019

    Longtail, I'm so sorry for all that you're dealing with. Loss of the use of a hand/arm is truly exasperating. There are other women here dealing with the same issues on the Radiation-Induced Brachial Plexopathy thread, and some possibly helpful suggestions for dealing with it here:

    http://www.stepup-speakout.org/Radiation_Induced_B...

    Do you have a knowledgeable lymphedema therapist? Especially if s/he is an OT s/he should be able to help with tasks of daily living with limited hand control. Unfortunately it's usually necessary to advocate for yourself to get the services you need. Hoping you can build a great team to help you cope--you certainly deserve it!

    Gentle hugs,
    Binney

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