Friday, May 26, 2017

Genetic Testing and Lymphedema

The American Society of Breast Surgeons held their annual meeting in Las Vegas, Nevada on April 26-30th. See here  There were two updates reported that directly affect me: Genetic Testing and Lymphedema. 

Genetic Testing
When I was diagnosed with stage 0 disease (DCIS) in 2005, I was offered genetic testing due to my family history. My mother was diagnosed with ovarian cancer when she was 35 years old. She never saw the return of that cancer, thankfully. Her mother survived uterine cancer.

My husband and I discussed the testing and what it would mean for our children. The possible genetic link and their futures in terms of cancer were relevant. We felt we needed to know. If I possessed an inherited gene, my children could be tested, and if it were found they too carried the same gene, close monitoring of their health could begin.

Luckily, the testing came back negative. At the time I thought another benefit of the testing might result in a family member stopping their use of genetics as a weapon against me for potentially causing my children harm. I felt enough guilt. He didn’t stop; sometimes people can hurt one another because they don’t think. Nevertheless, I felt better.

Months ago my Physician’s Assistant suggested I consider genetic testing again as technology has improved and there are more genetic mutations to look for now. In 2005, the test I underwent only looked at BRCA 1 and 2.

After reading the new guidelines from the meeting of the American Society of Breast Surgeons, I was surprised concerning all the possible mutations now found through testing. I felt the pain of fear stab me at the same time because of what I might find out through more testing. You can find more information here . The mutations are: BRCA 1 & 2, TP53 (Li-Fraumeni syndrome), PALB2, CDH1, PTEN (Cowden syndrome), CHEK2, ATM, STK11, NF1, NBN. The guidelines indicate what measures should be taken to monitor and possibly prevent breast cancer driven by these mutations. Mammograms and breast MRIs help to monitor for disease. Mastectomies, chemotherapy, and hysterectomies try to prevent it or control it once it occurs. As I read the report, I learned about other types of family cancers that put people in the high risk category for breast cancer. These cancers can have these particular mutations and include: pancreatic, colorectal, ovarian, prostate, thyroid, kidney, endometrial, gastric, male breast cancer, and an osteosarcoma brain tumor.      

In July, I will see a genetic counselor to further evaluate my case. I will write about the results of that meeting and/or testing when or if it occurs. 

Note: Errors can occur in testing. 

My first surgery for breast cancer in 2005 involved a bi-lateral mastectomy and the removal of two right-sided axillary lymph nodes. The nodes were negative. Round two, in 2009, a tumor that appeared near the center of my chest was removed in my breast surgeon’s office. My surgeon wanted to make sure there was no more cancerous tissue where the tumor had grown so she scheduled surgery, removed more tissue to be viewed under a microscope and also removed another lymph node. It too was negative.

Before surgery we discussed the possibility of lymphedema. She informed me that if the lymph node she was planning to remove held cancerous cells she would have to remove more lymph nodes. I was quite distressed. I had seen the pictures of severe cases of lymphedema. Avoiding it was high on my priority list. In the end, I have had three lymph nodes removed.

Not long after my surgery as I was going through radiation and chemotherapy, you guessed it, I developed lymphedema. At first it was mostly in my fingers and the top of my hand. I could push my finger tip into the top of my hand and pull it away and the finger impression would remain. A clear indication that indeed I had what I had feared. It eventually moved into my lower arm as well.

July 2010
In this picture, you can see my lymphedema is a mild case, but from my point of view, it was huge; I cried many tears over it. I hated my hand and arm. It was a constant reminder of what was happening to me. There were moments I wanted to cut it off thinking I would be happier with myself if my arm was gone. Strenuous activity like yard work made it swell even more. I spent hundreds of dollars—my insurance did not cover any of the compression supplies—on wraps, sleeves, and gloves trying to find what worked best for me. I went to a physical therapist to learn how to wrap my arm and hand correctly and to perform lymphatic drainage. Every night I elevated my arm and would try to stimulate the tissues and the lymphatic channels just under my skin with soft circular motions performed by my other hand. I started with my fingers and worked up to the top of my arm and chest hoping to send the swelling away. I couldn't tell if any of it was helping. I began to think that all of the help I sought was useless. This was something I had to figure out.

My plumbing issue of not having three lymph nodes where my lymph fluid entered and exited my arm gave me little hope of ever having a normal appearance again. After finally figuring out how to manage the swelling in my fingers and the top of my hand by wearing a glove purchased here in which I inserted padding for added compression, somehow after the onslaught of Taxotere and the year of Herceptin, I began to see veins in the top of my hand again. If I held my fingers together, light would shine between them. Could it be true? Was my lymphedema getting better?

It was.

Round number three came along and again I was treated with Taxotere, Herceptin and a new drug, Perjeta. My lymphedema worsened. Again I donned a compression glove and sometimes a sleeve. A year later my treatment switched to Kadcyla (TDM-1) and my lymphedema improved. My right hand will never be as small as my left hand, but as long as I can see the veins in the top of my hand happiness fills me. 

An article here reported on an interview with an attendee of the American Breast Surgeons meeting. Sarah McLaughlin, MD, a surgeon at the Mayo Clinic in Jacksonville, Florida said Taxane-based chemotherapies (Taxotere, Taxol) may contribute to lymphedema—of course axillary lymph node removal and radiation are still part of the equation. It appears that I was on to something in thinking maybe my chemotherapy treatment was worsening my condition.

Today, my hand and arm look like this.

May 2017

My fingers are still larger than normal, and my right hand is bigger than the left, but I don’t cry about it anymore nor do I wear a glove or sleeve.

If you have lymphedema, chemotherapy could be—in part—responsible. The best news is, it might get better after treatment with a Taxane is over, at least a little.

(I just discovered this company, LympheDIVAS, now have compression gloves instead of only gauntlets like they used to carry and can be purchased through Bright Life Direct! I have not tried them, but if my lymphedema worsens I might get a little crazy and try something fun. Nothing cheap about these, but they have wonderful patterns and colors. Check it out here . I found Bright Life Direct's plain tan gloves to work best for me.


  1. Hi Lisa, I never had lymphedema but about 2 weeks after my very last chemo treatment (I had 4 treatments of adriamycin/cytoxan, followed by 12 of Taxol), I had the oddest thing happen. My legs from below my knee to my feet became very swollen. Nothing seemed to help - I bought and wore compression sleeves and tried to reduce all my sodium (thinking it could be from too much salt) but nothing helped. I asked my oncologist about it and he prescribed a diuretic for a few days after doing a scan to be sure there was no clot in my legs and it eventually went away and stayed away. But....whenever I fly long flights or am on my feet for a long period of time, my left leg swells a bit and I often wonder if it came from the prolonged exposure to chemo, especially the taxol. I don't think I'll ever really know, but after reading your post it came back to my mind. I hope your lymphedema doesn't get any worse. Take care, Claudia

    1. Hi, Claudia, that is odd. Sure seems like it could be a side-effect since you had never experienced it before treatment. It is frustrating when something happens to our bodies that could be a side-effect and our doctors don't know the answers. Just shows there is so much more to be uncovered in the medical world. Good to hear you no longer have to mess with compression garments or worry about the swelling except for once in a while. Thanks for stopping by.

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    1. This has made my day! Thank you so much for this honor!

  3. My name is Janet. I have Stage 4 mestastized Breast Cancer that spread to the bone. Diagnosed 5/2015. Had radical mastectomy, chemo,radiation and reconstruction 2015-2016. Now I am on herceptin & perjeta every 3 weeks. I am so scared!I work( no choice) but I am starting to feel like very slow and ill
    I am so scared.

    1. Consult your oncologist. There are people your doctor can connect you to. Also, there are two Facebook groups you can request to join; the members there can help by providing you encouragement when you are down: Closed Metastatic (Stage IV) Support Group, She and Us and Her2. Just answer a few questions and your request should be approved quickly. You will need a Facebook Account, but that is easy. Being scared is normal. You must keep busy.

  4. Thank you so much for sharing! I am Stage 1A, ER+ and HER2+. Two Herceptin infusions left for me. I totally get you!

    1. Thanks, Kathy. Two infusions left--woohoo! that is fantastic!