Patient Stories - Secondary Lymphedema

Would you like to share your story? Please contact Angela Connell-Furi at (306) 477-1266

butterfly image Donna Donna Braham
Age 71
Secondary Lymphedema
Prince Albert, SK

Read My Story

It will be two years in July since I finished chemotherapy treatments.  As you can see my hair has grown back—not as before but some is better than none.

The most frustrating thing I found about lymphedema was getting timely information on lymphedema.  By the time I got it, I had made some choices I would not have made had I known what I do now. For starters, the possibility of lymphedema being an outcome of the breast cancer treatment was only mentioned briefly when I was informed of my treatment choices.  I was not informed about the limitations lymphedema creates, or about how the arm could initially be fine but then lymphedema could present itself (even many years later) if the arm is aggravated. Actually what started mine was having a doctor take blood pressure on that arm.  It really hurt at the time and the next day my arm began to swell.  It has only become worse since then.

DonnaThe only relief and method of semi-control for me is manual lymph drainage.  Fortunately, I live in Prince Albert and we have a well trained massage therapist who does the procedure.  This is costly as health programs only cover $200-400 worth per year.  Otherwise it is out of your own pocket.

I have found most of my information from LAS and similar organizations across Canada.  The Ontario association has worked well for me.  Talking to others who have it or know someone who does has proven very helpful.  And of course there is the internet.

Other than the pain, the impact of having lymphedema in my arm is that my ability to participate in activities has been limited.  I am not supposed to stress the arm.  So golfing, gardening, household duties, lifting, driving, baking, opening cans, simple life activities have become a challenge.

Another challenge I have faced is related to the compression sleeve.  Apparently one should have a sleeve to wear almost immediately after a mastectomy, but I did not know that. I should have been wearing one sooner than I did.  Also, the practitioners who did the compression sleeve fitting had trouble getting it to fit properly.  I have had five compression sleeve fittings and still the sleeve I presently have does not fit well.  The thing you have to watch for is that it should not be tight at the wrist and top of your arm.  In my case the first two were tight at the wrist so it caused my hand to develop lymphedema.  It is very difficult to treat the hand once you get it there.  However since I did not know this and the people fitting the garment did not either, I now deal with lymphedema in both my arm and my hand…and it is now spreading down my side, which is worse to treat than the hand.

Wearing compression garments, especially the compression glove on the hand, is very inconvenient for doing any kind of work.

There are different kinds of compression garments but it is something you have to research as the information is not given to you by the people who should know about them.  So…my tips to you are:

  • Have an extra layer of material added to the elbow area on the compression sleeve.  The last sleeve I had made included this and it prevents the pressure on that joint and helps it not to hurt as much.
  • In my opinion, the practitioners at the Therapies Department at the Saskatoon RUH appear more experienced in sleeve fitting than at Prince Albert. 
  • If you get the fitting done through the hospital, the government pays for the sleeves.  Whereas, if you go to Pink Tree or commercial outlets, the government does not pay for it.
  • If you get a prescription from your Dr. stating you need massage, the income tax accepted that for my medical expenses. This unfortunately is not the case for all people.

butterfly image Jean Jean Epp-Gauthier
Age 59
Secondary Lymphedema
Saskatoon, SK

Read My Story

Lymphedema after Breast Cancer: An Emotional Journey towards Acceptance

Photo of Jean

Lymphedema.  How does one come to understand this condition, to overcome all the conflicting information, to find resources and support, to deal with challenges and hiccups in your life, to calm the fears and inform the mind?  And how does one come to accept the diagnosis of a chronic condition, to embrace the new regimen, the ‘accouterments’, and most of all, the new appearance of your body foisted upon you in an effort to cure you of cancer –not only to accept, but even to love yourself and your situation? This became my goal.  How I narrowed the gap to that goal is the result of a serendipitous series of events.  I’d like to share part of my journey with you.

Certainly, adding lymphedema to someone dealing with the fallout of cancer treatment is a cruel turn of events.  An already difficult journey is then made even more difficult by the lack of programs, education, knowledge and understanding of lymphedema in our province, a situation that appears to be improving at last. 

Striving for a new state of balance, I found I was at first faced with some difficult lessons to traverse.  The first of these presented itself soon after cancer treatment began when my physical appearance was altered by surgery and chemotherapy. 

Bald and scarred, I referred to myself as ‘Frankenstein’s bride’.  Words like mutilated, poisoned, ugly, betrayed were part of my internal dialogue.  Let’s face it, after losing some but not all of your hair, you do have a rather dreadful appearance.  I know this by the expression of shock on my daughter’s face when she met me in the hall soon after the majority of my hair fell out in the shower. I had a few tufts of hair sprouting here and there on an otherwise bald head.  Poor dear couldn’t hide her alarm.  Next to spot me was my husband, whose eyebrows shot up in surprise.  Good man that he is, he gently led me back into the bathroom and shaved the offending clumps of hair off my round, white head - a definite improvement.  To his great credit, he never once flinched at my surgery scar, nor altered his response to me, other than this one time.  It was pure love and acceptance.  My daughter, son and their partners were nothing if not loving, encouraging and supportive every step of the way.  My brother, with his light-hearted humor, asked me to keep him ‘abreast’ of the situation.  I was one of the fortunate ones, with lots of support from family and friends.

However, despite this support, I still had to come to terms with my physical appearance.  If a mastectomy, weight gain and a bald head wasn’t enough, the next change was caused by lymphedema.  What is beautiful about one fat arm with an ugly garment reminiscent of grandma’s stockings? It really felt like the last straw. 

The first thing I did was a Google search to get more information.  I came across the picture – you know the one – the terrifying, enormous, hideous swollen arm. What a shock that was! Gradually, I would come to realize that this would not immediately be my fate.  However, the damage was done.  The arm became the enemy.  I headed down a road of blame and anger and fear.  Why did my Sentinel node biopsy fail?  Why didn’t my health care team prevent this? What did I do to cause this? What will happen to me?  What if it gets worse? This all sent me into a mild depression.  I retreated to my safe haven, at home with my pets.  Why me?  Why can’t it all just go away? ‘Nobody knows the trouble I’ve seen’ played like elevator music in my head… yes it was a real pity party.  Playing the victim has its advantages, I suppose, but it wasn’t ultimately satisfying. 

Slowly, still fatigued by chemo, I began searching, looking for answers.  But lymphedema is so distracting.  You can’t help but think about it numerous times a day.  It’s like you can never be free of it – you can’t run from your own body (and thoughts). 

A typical day: Wake up, check your arm, put on your sleeve, wonder if you need to order a new sleeve yet, resist putting on your glove, feel guilty for:  a) not wearing the glove, b) not doing the exercises, c) avoiding the deep breathing,  d) neglecting the self-massage…  try to do a little of the self-care to ease the guilt, put on your glove, try and find a top that fits over your big arm, rest during the day so it doesn’t get sore, wear your gloves when working in the yard, get frustrated and remove your gloves, find a small scratch on your affected hand which you wash and treat with Polysporin and a Band-Aid, stay out of the heat, sit with your arm up, take the glove off and on all day long – when cooking, washing, & going to the bathroom, give my husband a running play-by-play on the state of my arm, answer the question of people you meet: ‘What’s wrong with your arm?’, wash your sleeve and glove, at bedtime check for any damage to the skin , put expensive lotion on your arm, put on your  expensive sleep garment having given up on:  a) the first type of expensive sleep garment, b) self-bandaging (in a dramatic fit and stuffed it all in the closet), try to fall asleep, take off the sleep garment and throw it on the floor, worry about the scratch (What if I get an infection?), toss and turn, worry some more if your arm aches and feels hot, promise yourself you will do the exercises (wonder if they really help), listen to your husband complain about the extra pillows supporting your arm, chuck the pillows, later retrieve the pillows….and so on.

Thanks to my understanding physician, I was able to take some time off work to sort myself out.  Due to a good benefits package, I had access to a counselor, and could afford a massage therapist specializing in lymph massage.  All of these things helped put me on the road to physical and mental health and I’m very grateful for them.  Also, I did a great deal of work on my own, reading, studying my book (Overcoming the Emotional Challenges of Lymphedema), and attending workshops.

Photo of SurvivorsThen I met a group of cancer survivors with lymphedema.  Imagine my relief (and my family’s who were having caregiver fatigue by this time!) when I was able to find this support group of sorts.  It came in the form of six women I met in a research study I participated in dealing with arm mobility issues in women following breast cancer treatment.  It was here that I was to find my fellow travelers on this journey. 

WWe became supports for each other, little by little sharing our stories, sharing knowledge, sharing laughter and tears.  We had such a need to be heard, to speak aloud our fears, questions and observations.  It all came pouring out and was carefully gathered up by the research team and came back to us in the form of a play.  This we presented in various cities in Canada to health care professionals and persons living with or at risk for lymphedema and their families, as well as those with primary lymphedema.  It was incredibly healing and empowering for us to be together.

The work was translated into French.  Thus I was able to meet and perform with a second group of amazing women.  I feel so fortunate.

Now several years into this adventure, I have found a measure of meaning and understanding about this condition, lymphedema – a word I had never heard before.  At this point in time, I feel like the way to a balanced life centers around acceptance.  This is where I would like to focus my attention.  Hopefully, when my lymphedema acts up, as it surely will from time to time, I’ll be able to deal with it.

I’ve changed since this journey began.  I have compassion for my body now and how it got me this far. I am grateful for this lesson.  I have felt truly loved by my family.  I have made some marvelous new friends, my ‘cancer people’ who are so precious to me.  I’ve seen what I look like without hair and with a very cool wig! I’ve met every sort of medical professional. I have received hugs from nurses and strangers.  I have been prayed for by people I have never met.  I have even found a one-eyed, battered, stray cat who shared my convalescence and taught me volumes about living with a chronic condition, but that’s another story….

Jean Epp-Gauthier

I was diagnosed with breast cancer late 2007, had a mastectomy in January 2008 with a sentinel node biopsy that was unsuccessful and resulted in the removal of 18 lymph nodes.  This was followed by a chest infection which necessitated the removal of my tissue expander (reconstruction).  I then received chemotherapy:  4 rounds of AC, plus one year of herceptin.  I was diagnosed with lymphedema in my right arm in 2009. Since then I have had one bout of cellulitis.

Photo of Jean