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. 

Lymphedema
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.

In Defense of Sympathy

gograph.com

When I was in high school, a friend telephoned to tell me a boy we knew had been killed in a car accident. He was 17. I remember putting down the receiver unsure of how to feel. It seemed surreal.  I had never experienced the death of someone I had known so well. I remember feeling sadness for his sister, his parents and for him, but otherwise I felt lost, almost empty.

For a long time I have been steadfast in my belief that empathy meant one person had a similar experience with another allowing each to better understand what the other was going through, emotionally. Today there is no doubt I would know exactly how to feel if that same friend called to tell me our friend had died. I am aware of the pain that comes from my knowledge of it. That, to me, is empathy. Sympathy, on the other hand, meant that a person had concern for, cared about, and had emotions about what another was going through even though the person feeling sympathetic had not have experienced a similar event.

Over the last few years when I hear or read of someone using the word empathy instead of what I think is the more appropriate word, sympathy, I would say to myself, “Why isn’t the word sympathy good enough?”  So, I decided to do some research. What I discovered about these two words, especially empathy, was surprising.

The word empathy is relatively new to the English language. It was introduced in 1909 by the British psychologist Edward Bradford Titchener who translated the German word Einfühlung into our English word empathy. The word at its inception gave people a way to describe the experience felt while viewing visual arts; it described a kind of tapping into the emotional aspect of that viewing. From there its meaning continued to take on a larger role in explaining people’s emotional lives and connections we have to each other.

In my research, the surprise I encountered was there is not a wholly agreed upon definition of empathy. It varies from the meaning of sympathy being flip-flopped with the meaning of empathy to using one’s imagination and everything in between. After much reading I must confess that my definition may be outdated. Even though my meaning of empathy needs some tweaking in order to be in sync with the zeitgeist of our times where empathy involves using the imagination, I still believe my definition is the better one because merely imagining yourself viewing an experience from another’s viewpoint has its limits; those limits are defined by the experiences we have had. I also believe sympathy has a role to play as well, a larger one than it now plays.

Though I do agree that the definition for empathy of imagining oneself in someone's shoes is not a completely wrong idea, the 18th century philosopher and political writer Adam Smith’s words in his work The Theory of Moral Sentiments (1759), here, caused me to rethink the contemporary meaning of empathy. Though he wasn’t talking about the word “empathy” –because it wasn’t yet used—he did describe humans projecting “our feeling into other forms in order to experience ourselves.” He wasn’t talking about seeing an experience from another person's point of view either. Instead he was explaining how we learn about ourselves through someone's experiences. That sparked a flicker inside my mind about empathy. I decided to take his idea and change it to offer what I think is a better definition for empathy. (Hey, with all the different definitions floating around I decided I can come up with one of my own.) Here is what I think: when empathizing, people are projecting their own emotions onto a person therefore they are not seeing it from the other person’s point of view but from their own. It is, at least to me, impossible to understand completely what another person is feeling. Humans do in fact project emotions onto lots of things, not just people. Take a look at advertisements about abused animals, or the fact that some of us hate to kill bugs as we watch them swirl around in the toilet after flushing. Others feel sadness if a plant dies especially when weeding out the little seedlings to make room for a healthier plant. Children worry about stuffed animals being left alone probably because they don’t like to be alone themselves.  We can’t feel what those life forms or objects feel--yes I know objects don't feel--but we do project what we might feel if we were in their position. That I believe is a much better definition for today’s use of the word “empathy”.

Over time, empathy has become the favored term over sympathy. Sympathy was used to describe our moral compass; if a person thought a behavior of another was bad then it was considered morally wrong. Empathy explained the emotions felt by those same behaviors. Eventually more people than not believed this word had the meaning I am most familiar with, one of knowing what an experience feels like because of having had a similar experience. Then came the push to persuade people that the word is about imagining being in the skin of someone else and seeing it from their point of view rather than from your own.

People advocating for social change began using this new imaginative idea extending from empathy's new definition. They were  hoping to improve the lives of those in poverty, improve working conditions, and help those who were ill or perhaps ostracized from the larger social networks. By talking about empathy, attempts were made to open people’s eyes to the fact that though that person doesn’t talk like you, look like you, or act like you, they are still a person with feelings and desires just like you. The idea is if people can create more of a “shared” connection to others a change in their behaviors would cause them to take action to better those people’s lives.

Our educational institutions took up the challenge of changing behaviors to better our world through empathy as well. Reading novels is supposed to create a connection with the characters and young readers. It does show readers that people have endured great sadness during wars, plagues or of governments mistreating their people. It does allow them to see a place in the world that might be completely different than the one they reside. But, it is clear to me that empathy is a process. To truly understand another person's hardship or even joy, you must live it yourself or at least experience something similar. I can tell you someone is probably scared traveling across a border to get into America illegally, but I can only guess what fear they are feeling having not experienced anything similar in my life. Seeing it from their point of view then is impossible. When I was a stage I breast cancer patient, I could imagine how I would feel if I became stage IV, but none of that prepared me for when I did become stage IV. It was much harder than what I thought it might be. I had projected my feelings onto each person who seemed worse off than I while sitting in the waiting room eventually to be seen by my oncologist. I still had hope at that time so my inexperience clouded my thoughts of their reality.

Currently my daughter and I are reading the Red Umbrella by Christina Diaz Gonzalez which is about two children whose parents send them to America to escape Cuba at the beginning of Fidel Castro’s regime in 1961. As I was reading aloud one afternoon, she saw me become emotional when the parents told their children they must go to another country for a while, alone. While I was tearing up and my words were breaking, she looked at me. I could tell she could not feel the same emotion I was feeling for these characters. She could not feel the pain of the parents having to send their children away nor feel how afraid those children felt being sent away. How could she? She has never experienced anything remotely close to what these people were experiencing. Though I cannot possibly get into the skin of those parents in the story, I do have children and have been afraid of losing them in a crowd or in some horrible accident. Was I feeling empathy or maybe a mix of sympathy and empathy for the characters? Was my daughter feeling sympathy with no life experience to feel anything else? And, does it matter what feelings we were having as long as both of us knew that people should be treated respectfully; that we should do what we are able in order to help people when we can. Not just on the big issues such as refugees but on the day to day contact humans have with one another.

Unfortunately, I think an unintended consequence has occurred due to the current political climate in regards to empathy. It may in fact be pitting people against each other. Choosing sides and wanting to produce change through anger seems wrong. I agree with Paul Bloom here  and Jonas Goldberg here that we can get so caught up in the empathy for one person that we can forget to be empathetic toward another. Think about this for a moment: if insurance pays for a treatment for one person, it may mean another receives no treatment at all because money is finite. If I say all refugees should not have an open door to come into America then I am labeled as evil instead of seen as caring about American citizens. It doesn’t mean I don’t care about refugees, it just means I am ALSO concerned for a different group of people, the group of people in my country. If we include young women with stage IV in a particular group because their needs are different than someone who is 50 or older than we are placing more importance on those particular individuals. When people take or give something for themselves or others, someone else loses that something. I think many people forget that. Our lives each have a price tag. If we insist that money be spent on one individual or one particular group of people then someone will suffer. I don’t like it, but it is reality. The choosing of who gets what is so difficult.

Sympathy may be the only thing we ALL can feel. Why can’t that be enough? Does it make us feel better about ourselves if we pretend to know how another feels in any given experience? Maybe it does; maybe it doesn’t; does it even matter?  Sympathy doesn’t mean we have no feelings about the person or their situation. It doesn’t mean we don’t want to help. Sympathy may be all that is needed to facilitate change. We can make change happen because we know what it is to simply . . . feel.




For some not so light reading, these websites will provide wonderful information to ponder.     

http://www.branchcollective.org/?ps_articles=rae-greiner-1909-the-introduction-of-the-word-empathy-into-english
https://www.psychologytoday.com/blog/hide-and-seek/201505/empathy-vs-sympathy
https://www.theatlantic.com/health/archive/2015/10/a-short-history-of-empathy/409912/
https://www.opendemocracy.net/transformation/roman-krznaric/welcome-to-empathy-wars