Surgery on LE side. What do I need to know?

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Dilly
Dilly Member Posts: 655
edited March 2019 in Lymphedema

Well, over the course of the past couple of years, fortunately (unfortunately) I learned a lot from you ladies  right after my surgery and recovery - and was able to advocate for myself and get LE therapy from the beginning.  So first off, thank you all for posting your experience and knowledge - it made a huge difference in my life.

With immediate therapy, exercise, compression, MLD, I've managed to avoid the dx of "stage one" - and was dx at  "stage 0, but LE definitely there".  In 2010 I only lost 3 nodes, but I'm small, and pretty strong & lean especially for a senior.

Fast forward to May 2012. About an hour after my all-clear 2-yr mammo. (IDC, lumpectomy), I realized I had a lump on my upper arm at the shoulder, same side - upper outer arm almost opposite from where the SN incision. The lump felt doughey. Saw PCP 3 days later, he dx lipoma - a fatty tumor.

After xrays and MRI & ortho surgeon visits, it is a lipoma, and it looks like it needs to be taken out.  My concern is that this is the arm with "no sticks, no bp, etc."  I don't want to compromise the lymph system any more than it already is.

 I am already feeling the effects of this extra mass in the arm - more swelling in my hand, the numb & tingly feeling.  (so I'm doing some MLD & exercises.)   

What do I need to know before I pre-surgery consult with the surgeon? I just don't know what to questions to ask or ????.

Thanks very much for any suggestions.

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  • Nitocris
    Nitocris Member Posts: 187
    edited July 2012

    Lost Creek,

    Binney and Kira will certainly give you more information later,  but in the meantime, here are resources where you can find useful information:

    http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm 

    Scroll down the page to  "Guidelines for surgery on an arm, shoulder, hand or breast with lymphedema". 

    http://www.lymphnotes.com/article.php/id/465/ - LymphNotes - Protecting lymphedema patients during surgery.

    Take care 

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  • Dilly
    Dilly Member Posts: 655
    edited July 2012

    Thank you Nitocris for the links - I've printed the articles, & spoken with the LE therapist.  Onward.

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  • KS1
    KS1 Member Posts: 632
    edited July 2012

    Hi Lost Creek,

    Why is it that these odd things always seem to pop up on our at risk side? Is there urgency about removing it? is it compressing a nerve?

    The reason I ask is I have a large lipoma below the elbow of my LE side on the pinky side.  After a bit of back and forth between my various doctors and therapists about pros/cons of removing it, the decision was to wait to see if continued to grow.  It didn't, and the collective decision was to leave it be for the time being.  MY LE therapist has shown me how to work the fluid around the lipoma.  My situation is different (I've got stage 2 LE and had an ALND and axillary radiation), but just something to think about.  You can always choose to have surgery in the future, but you can't undo surgery once it is done.  

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  • Dilly
    Dilly Member Posts: 655
    edited July 2012

    KS1, thanks for the reply - I am still in the "various doctors" phase, and have not committed to the surgery.  Last visit with ortho, she said she'd be glad to go ahead and remove it - the lipoma was bigger than she'd thought, and it came out between two main arm muscles right at the shoulder joint where there is a lot of motion.  My reply was "thanks, I'll wait awhile" "I can deal with the discomfort it's causing (burning & achiness)". 

    But, this mass does seem to be pressing on a nerve or something, and the pain definitely increases during normal daily activity (it's summer, I'm active),  I can't find a comfortable sleeping position, and my hands are swelling more than normal. So I'm having second thoughts about waiting.  I have appts this month with PCP & onc, and will listen to their opinions as well.  I just like to try to be a good Girl Scout - prepared.

    Thanks again and I truly appreciate your last line cautionary note!!!

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  • toomuch
    toomuch Member Posts: 901
    edited July 2012

    Lost Creek - After my AND I suddenly became aware of a lipoma at the outside part of the same axilla. It must have been there all along but it fell down into the crease of my axilla after the AND. It was uncomfortabe and in my radiation field. My RO wanted it removed before radiation. I already had St 0 LE. After it was removed the heaviness in my arm improved. After radiation I ended up with St1 LE but I did have a few months of improvement. I wrapped immediately after surgery and did daily MLD.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Hi - I am visiting LE threads for this same info, so pleae keep it coming.  

    Nov 2011, excisional biopsy of large mass in breast and one node of 11 was cancer  (Sentinel biopsy).

    now, PET CT then US and biopsy has revealed there are two more nodes cancer in the same axilla.

    The biopsy alone has left my arm messed up, nearly twice the swelling as before, some days ago really bad.  Now better but still......

    I am considering crytoablation (freezing nodes) or RFA radiofrequency ablation to kill cancer cells, have appt w dr Wed.  Also have one  w rads but do not prefer rads, and anyway the onc said I 'had to have these removed first before rads or chemo' and though I am more of al alt type, I understand his position.  But he does not understand mine, the LE is changing my life and now I face worse.

    Experiences?  Suggestions?  Knowledge?  

    I will read links above too and continue to explore threads.  May make own thread for question.  Thank you.

    Diane, Essa (nickname)

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  • Samnjb
    Samnjb Member Posts: 26
    edited March 2019

    hi dilly I am going through exact same thing. I have lipoma in same spot. Can you tell me how yours turned out?

    Thanks

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