Going into surgery I have to admit, I didn’t know what lymphedema was, let alone that it was a possibility for me following the procedure.  There was a packet about it in the folder I received at the time of my diagnosis, however I opted not to read it, I figured it didn’t apply to me at the time, so I’d read it if & when it did. 

During my bilateral mastectomy they removed 15 lymph nodes, of which 3 were cancerous (2 sentinel nodes & 1 axillary).  Following surgery aside from the pain in my chest & abdomen, I noticed that my left arm was numb on the top half, especially on the back side of my arm.  It felt heavy & sometimes hurt pretty intensely.  At times it even felt as if someone had rested their hand on my arm & I would jump about three feet in the air!  When I mentioned the arm to my breast surgeon she explained that there can be some nerve damage when removing lymph nodes & there could be some lymphedema starting as well.  They’d assess it later & send me to the lymphedema clinic if necessary, in the meantime I was not allowed to have blood pressure taken, blood drawn from or receive any shots or IVs in the left arm.

At that point I began to research & learn what I could about lymphedema.  Basically, lymphedema is the build-up of lymph fluid caused typically from missing lymph nodes, either having been removed through a surgical procedure or some are born with missing nodes.   With breast cancer the swelling can occur in the arm, breast and/or chest, other surgeries can result in lymphedema in the legs, arms, even the head and neck.  The severity varies & aside from swelling, symptoms can include a feeling of heaviness, pain, thickening or tightening of the skin & even blisters in some cases.   The strangest part is it can develop shortly after surgery or it can develop slowly over time, some don’t experience it until many years later.  Radiation increases the risk of developing or worsening of lymphedema as well.   

At the next follow up with my surgeon she referred me to the lymphedema clinic to be measured to determine if I had in fact developed lymphedema.  I called to make the appointment & was surprised when they set me up with two appointments each week for an entire month.  As it turns out I was actually going to occupational therapy with a lymphedema specialist. 

At my first appointment my therapist measured both arms to find that my left was indeed swollen slightly larger than the right, as well as the left breast had swelled some.  She had me add another month to my therapy schedule & put me in a temporary compression sleeve right away.  She put in a request for my doctor to prescribe an actual long term compression sleeve as well.  At each session she worked the excess fluid in my arm upward & across my chest toward the good arm where there are fully functioning lymph nodes.  Over time she taught me the self-drainage massage technique which I also do nightly to help minimize the swelling as well.

With the combination of the compression sleeve & occupational therapy twice a week for two months eventually the swelling went down enough to eliminate the need for continued therapy.  I continue to self-drain with massage at home as well each night before bed & wear my compression sleeve constantly.  

Going forward it’s important to protect the area affected with lymphedema.  Cuts or bites can cause complications with the lymphedema & should be properly cared for promptly.  It’s important to avoid excessively hot & cold temperatures with lymphedema as well.  I found personally when I tried to stay outside on a 90+ degree day, even just after a couple of hours my arm will swell.  Hot tubs & saunas are no longer an option & I have to be careful when flying as well since the pressure change can cause issues as well.  In many cases, even if you haven’t been diagnosed with lymphedema, but have had lymph nodes removed you may have to wear a compression sleeve as a precaution as it could develop from the pressure change as well. 

I have also read that excess weight can be a factor with lymphedema.  I’ve got about 15 extra lbs on me I’d say, so I am working hard to improve my eating habits long term & getting on my treadmill every single day, no matter how tired I may be from radiation right now.  One of my first questions to my occupational therapist was if I could go back to lifting my 5 & 10 lb weights.  She broke my heart when she said, I had to start with a 2 lb weight & do just 10 reps a day!!  What?!  I like to work harder than that!  So… in the meantime it’s just me & my treadmill since I can’t do pushups or lift weights, but I can still walk & run, so I’ll get there! 

Additionally, there are some surgical options available for lymphedema.  There is a procedure that can be done to transplant lymph nodes from another area into the area that is lacking & causing the lymphedema.  I was very excited to learn that my plastic surgeon who did my reconstruction is an expert in this surgery & so long as I am a good candidate for it, I plan to explore this option!  While I do not look forward to another surgery, I would love to be free of the compression sleeve.  Not to mention if cancer would leave my family alone for a bit I would love to take a long overdue tropical vacation one day & not worry about my arm swelling in the heat or my sleeve getting wet at the beach! 

As of now my lymphedema is bothersome but mostly manageable.  As I continue through radiation now, I am feeling an increase in the heaviness & pain in my arm.  I have a machine on order now that wraps around me & will actually massage the fluid for me, they’re recommending I use it for an hour each morning & each night to minimize the swelling.  I’ve also come to learn that the majority of the pain I’m feeling in the arm is more from nerve damage, rather than the lymphedema.  The pain indicates the nerves are working to repair themselves, which is good but painful in the process.  My doctor advised this can take 1-3 years to be fully repaired. 

So while lymphedema is sort of a pain & sometimes quite literally.  The sleeve can be annoying & hot in the summer, but it’s a reminder to me that I’m lucky to be alive & when it’s hurting, I just remember that I’m still here to feel the pain & that’s a whole lot better than the alternative!  I still have hope that one day I can get past it & live not only a cancer free life but a lymphedema free life as well!!

This is the box from the compression sleeves that I have currently. Don’t you just love how excited she looks to be wearing it! Lol ☺