Funky Lymphedema

Funky Lymphedema

Lymphedema is… I don’t even know what to call it…so, funky lymphedema it is. In a nutshell, it is a painful accumulation of fluid in an extremity, and it is incurable. You may recall hearing about it in the news recently, when Kathy Bates became an advocate for people suffering with lymphedema. When I first heard about lymphedema early on in this journey, it was one of the things I actually feared most. The symptoms of lymphedema include painful swelling, skin changes, heaviness, and fatigue in the affected limb. My fear was that this condition would prevent me from doing the things that I love most. Despite my fears, I started experiencing the symptoms of lymphedema back in January, as a result of the skin infection (cellulitis) I developed in the area of my surgical scar.

There are a number of reasons why women battling breast cancer develop lymphedema. I have a combination of all of the causes, so, to say that I was at high risk for developing lymphedema is an understatement. It can result from mastectomy surgery, especially if lymph nodes are removed. Radiation targeted at the remaining nodes does further damage to the lymphatic system. Finally, infection to the area with the compromised lymphatic system can be very difficult to clear from the affected extremity. Naturally, having ticked all of these conditions off my list, I was primed to develop lymphedema.

The purpose of the lymph nodes is to filter proteins and fluids from the lymphatic system. When the damaged (or absent) lymph nodes can’t keep up with this function, the result is fluid buildup in the extremity, in my case, my right arm. My arm was slowly puffing up like a water balloon. My kids found it entertaining to press on my arm and watch the indentation of their fingerprints linger for several minutes. An oddity, yes, but I was not amused. Mainly because simply lifting my arm left me feeling like I had done a hundred reps with heavy weights. And the pain of axillary web syndrome also returned to my arm.

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The only way to reduce the swelling has involved ongoing physical therapy over the past two months to try to reduce the swelling and return my arm to its normal size and strength, as well as daily wrapping to prevent additional fluid from accumulating. I was doing pretty well. With the help of the lymphapress (think of a sleeve with about 8 air chambers that fill with air in sequence to squeeze the excess fluid into my veins where it can be carried out of my arm), my arm was returning to normal, and feeling better.

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With months of physical therapy, my arm was almost back to normal, when a miniscule scratch turned into full blown cellulitis. I caught it early and was put right back on the antibiotics. After a 10 day course of antibiotics, it cleared up, but as soon as I went off the antibiotics, I developed another area of cellulitis on my forearm, completely out of the blue. So, back on antibiotics. Once again, after my latest surgery, I am facing more pain and swelling in my arm.

Sadly, there is no cure for lymphedema. I will forever have to protect my arm. I have to avoid scratches, bites, blisters, sunburn, etc. to my arms. I will forever have to wear a compression garment, wrap my arm when swelling begins, and carry antibiotics. I will forever have to face questions such as, “what did you do to your arm?” I’m still working out how to answer those questions. I didn’t DO anything to my arm. On second thought, maybe I did. It’s the small sacrifice I made to rid cancer from my body.

What I have learned in the last few months trying to control the lymphedema, is that I don’t have to fear it. I will not allow it to prevent me from doing to things that I love. It’s just one more reminder that I need to remain diligent and make my health a primary focus. I need to work a little harder now to grow strong, and implement healthier choices into my life. I feel assured that the more active and stronger I become, the easier it will be to control the lymphedema.

Second Opinion…and Third…and Fourth

In my mission to avoid surgery, I have gathered the opinions of many doctors, peers, and experts over the last 3 weeks.  After talking with Dr. Tjoe, my surgical oncologist, I decided that I wanted a chance to meet with the other plastic surgeon that she had consulted with about my situation.  I felt the need to get a second opinion and hear about the other muscle sparing options that were mentioned.  I also consulted with my Dermatologist to get a non-surgical perspective.

I got in for my second opinion on February 2nd.  The appointment went really well.  Surgeon #2 spent nearly an hour and a half with me discussing my options and answering my questions.  He took the time to show me pictures of procedures I might be facing so I could see the outcomes I might expect.  We ruled out the TRAM Flap (abdominal) since I just had fat grafting from my abdomen.  He explained that the tissue could be damaged and blood supply compromised.  By the end of the appointment, his recommendation was for me to undergo not one, but three additional surgeries.  First, remove the implant and damaged skin and allow at least 3 months for my skin to heal.  Then he would do a LAT Flap, using muscle, tissue and skin from my back to replace the skin that was removed in the previous surgery, and put in a tissue expander to stretch the area to the desired size.  Finally, I would have one more surgery to exchange the expander for the final implant.

Not thrilled, because, going into the appointment, I had hope that there would be a non-surgical way to heal, and coming out of the appointment, I was facing three more surgeries.  He was also willing to let me try to heal a little longer, and prescribe a cream that is used with burns and difficult to heal wounds.  He also suggested that I continue with the antibiotic for up to six weeks.  I did learn a lot at the consultation with the second surgeon, and I took that information and continued to read and learn more.

Yesterday, I returned for my follow up with surgeon #1.  We discussed the other surgeon’s strategy as compared with his.  He feels that it would be overly conservative to spread it out over 3 surgeries.  He believes that the cellulitis is confined to the skin, thus making it possible to replace the damaged skin with the LAT Flap and keep the implant in place.  I like the idea of only one more surgery, but I’m not entirely comfortable with this option either.  The last thing I want is to go through the surgery only to have the infection continue, forcing me to have another surgery to remove the new implant.  Then I’d have to start all over again, and would have sustained damage to my back in the process.  It seems to me that the infection goes beyond the skin, because I have pain in my side, chest, back and arm. My arm is very swollen.  He said I could have an ultrasound guided aspiration and a culture to test if the infection is deeper into my tissue.  Otherwise, he could make that determination during the surgery by taking the implant out and testing for signs of infection before deciding whether to continue with the reconstruction or not.

My first thought upon leaving that appointment was to let surgeon #1 attempt to do the reconstruction in one surgery, with the understanding that, if there was any sign of infection, I would want to simply remove the implant and heal before attempting reconstruction.  Leaving the surgeon’s office, I made my way over to my medical oncologist for a follow up appointment.

Being early, I decided to detour upstairs to pick my physical therapist’s brain and ask her about a compression sleeve to deal with the lymphedema in my arm.  When I showed her my arm and explained the pain I had, she assured me that the swelling was a reaction to the ongoing infection rather than lymphedema.  Her explanation was that lymphedema does not cause pain or limit range of motion.  She also told me that compression sleeves are not the most effective way to reduce the swelling, since “one size fits all” doesn’t take into account the fluctuating levels of swelling.  Instead, she gave me a wrap (like an ace bandage, but not so stretchy), and instructed me on how to use it.


On to the oncologist, I got blood work done, which showed that my white blood cell count was still low, not helping me fight the infection.  I decided to withdraw from the study drug since that was most likely the cause.  I also asked the oncologists and her nurses their opinions on the surgical decision I was facing.   It was a long day of appointments and a lot of information to process.  I didn’t feel ready to make any decisions until I had a chance to sleep on it.

Today, I feel ready to move forward with my decision.  I have spoken with 3 surgeons, an oncologist, a physical therapist, peers in my support group, and on and on.  I know that I’ve exhausted all other options, and surgery needs to happen soon.  The incision wound is getting worse, not better, after a month of trying to save the skin and heal.  The pain and swelling in my arm is affecting my day to day existence.

My gut feeling is that I need to get the implant out as soon as possible and heal fully before attempting another reconstruction.  Then when I am sure that my skin is better and the infection is handled, I will do the LAT flap procedure straight to the new implant.  So, 2 surgeries rather than aggressively doing one surgery or conservatively doing 3.  Seems like a good compromise.  I’m ready.

The Waiting Game

The Waiting Game

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Over the weekend, I did what I could to rest and give my body the chance to fight the infection. My right arm, which felt like it’d been through a meat pulverizer, became increasingly swollen and very sore, further limiting my range of motion. I developed a strange ridge just above my elbow that was extremely tender and I wondered if it was a blood clot (but Andy told me it wasn’t). I also feared lymphedema, which is a buildup of lymph fluid that causes swelling of the arm. I kept up with the heat and ibuprofen to ease the cording pain, and waited until Monday, when I would follow up with the nurse and the physical therapist.

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The first thing I wanted an answer to was what the strange and painful lump in my arm was. The nurse told me that it was not a blood clot, but she was at a loss for what it was. We went on to talk about what the plastic surgeon was recommending, and she measured the red area to see if the antibiotics were resolving the infection. It was smaller, but still pretty red. She said that the radiation fibrosis was making my skin so tight over the implant that I wasn’t getting enough blood flow to the area to promote healing. In healthy skin, they could simply remove the damaged area, and sew it back up to heal, but this wasn’t an option for me because my damaged skin wouldn’t be able to handle being pulled back together and, with limited blood flow, would struggle to heal. She said, because of my age, she felt it would be worth it to do the more involved reconstruction, rather than to remove the implant and have to deal with a prosthesis long term.

Next, it was back up to physical therapy, where my therapist introduced me to another patient who had also sustained nerve damage in her arm during surgery, and was also dealing with celulitis. We started chatting and comparing notes, when I looked up and saw Leslie, my PT, talking to Dr. Tjoe, my surgical oncologist. I haven’t seen Dr. Tjoe since last spring. Happy to see her, I waved, and then I realized she was there to check on me, as she motioned for me to join them.  She said she had been following my notes from the plastic surgeon and her nurse, and wanted to take a look for herself.

So, we went off to a room, along with Leslie and a resident, and they all started examining me and discussing my situation. I again told them about the swelling and cording, and the strange ridge on my arm. Leslie was the one who identified it as another manifestation of axillary web syndrome (cording), which made sense because the pain was the same as I’d had in the past, it just looked different.  Dr. Tjoe explained that the pain and swelling was a result of the infection.

I was so fortunate to have Dr. Tjoe there to look me over. She is a remarkable doctor and really takes the time to explain things and answer all of my questions. I told her that I was hoping to avoid additional surgery (mainly because I am ready to rebuild my strength and move on), but that I wasn’t so stubborn as to refuse surgery if all the doctors were telling me that surgery would be my best option for the long term.

She explained to me that my plastic surgeon is very proactive, and would prefer to do the surgery under controlled circumstances rather than wait until it became an emergency situation, where a raging infection could force him to remove the implant entirely, and not reconstruct. She also explained that, by taking healthy tissue and muscle from my back (LAT flap) or abdomen (TRAM flap), I would not have to struggle to fight the constant tightening and limitations that the radiation fibrosis is causing, and will continue to cause for years to come. She mentioned another colleague who does a newer variation on the surgery which does not involve cutting the abdominal muscles (DIEP Flap), which sounds better in my opinion. Then, she asked if she could take a picture of the area so she could consult with the second plastic surgeon.

Leslie started working on my cording, an extremely painful process, which involves pulling and stretching and massaging my arm to “release” the cords. It is torture, but it usually provides some relief. While working on me, Leslie got a phone call with further instructions from Dr. Tjoe. It reminded me of the game Telephone, where one person whispers something to the next person, and then each person whispers what they heard until the last person says it out loud, usually with a mixed up translation. I can’t say for sure that this message didn’t get mixed up along the way, but from what I got out of it, the second plastic surgeon told Dr. Tjoe who told her nurse, who told Leslie to tell me that he concurred with the opinion that my skin may not be capable of healing on its own. They suggested that I start researching my options more so that I will be ready to make a decision if need be. They recommended that I take a second course of the antibiotic to keep the infection at bay, and I was told to schedule another follow up with the nurse, and to continue to work with Leslie.

My daily trips to the hospital continue this week, as we wait and see.