Lymphedema Awareness after Breast Cancer

March is Lymphedema Awareness Month.  I deliberately posted this on the last day of month because we all put Lymphedema at the end of the line in Breast Cancer.   As someone who lives with the realities and challenges of Lymphedema every day,  I am passionate about warning Breast Cancer Patients to PAY ATTENTION and get help and information about Lymphedema.  Now that my sister has recently finished active treatment for breast cancer and had many nodes involved, I am constantly warning her about Lymphedema!

Make sure you have attended a Lymphedema Class and  arranged a consultation with a Lymphedema Therapist immediately after breast surgery.  Preventative actions, treatment and knowing what to look for can help your future in a big way.    

If you even have had one lymph node removed, you can get Lymphedema. Surgeons and Oncologists may tell you otherwise.  Do not listen to them!  I have had plenty of letters from women who had been told, “Don’t worry, you aren’t at risk for Lymphedema” by a physician and then BAM!  Lymphedema hits in full force.  Some women have gotten this condition with no nodes removed, but that is more rare.

At the very LEAST, your preventative measures should include 1)  Wearing a fitted compression sleeve when you fly in an airplane – even for short flights;  There is other information out in googleland to the contrary.  Do not listen to it.  I have met two women who have full-blown Lymphedema after a quick air flight.  One had been 20 years out of cancer treatment!   2)  When you are lifting heavy items or moving heavy items, make sure to wear a compression sleeve.   3)  Lots of repetitive motion like shoveling snow, sweeping, mopping could be cause to wear a compression sleeve.  Pretending Lymphedema cannot happen to you does not work!

I got full-blown Lymphedema after lifting three heavy plastic grocery bags with my “bad” arm.  And I had been to all the classes and visited a Lymphedema Therapist.  That is all it took to bring it on and cause me to wear a compression sleeve and often a gauntlet every day for the rest of my life.  Here is a previous blog post I wrote about Learning to Live with Lymphedema that gives more information: https://denise4health.wordpress.com/2013/02/11/learning-to-live-with-lymphedema/

The following 10 minute, professional video entitled, “Breast Cancer’s Dirty Little Secret”  does a wonderful job giving more information about Lymphedema.  It is definitely worth investing the 10 minutes to watch!

Lymphedema Warnings

Since it is the holiday season, that may mean hauling gifts, moving Christmas trees, lifting heavy boxes, shoveling snow and perhaps flying to visit family. Which makes it a great time to talk about Lymphedema!!  You do not want this to happen to you:

Breast Cancer Survivor who lives with Lymphedema

Breast Cancer Survivor who lives with Lymphedema

Lymphedema is like strapping a brand new puppy to your arm 24 hours per day.  It constantly demands attention.  Never is there a moment when you do anything from walking to heavy work, that you aren’t thinking about your arm and Lymphedema.  I hear this from people who see my compression garment and ask me, “What did you do to your arm?”   My response:  “I have Lymphedema from breast cancer.”   Sometimes,  I get tired of dealing with the questions and explaining so I have used these responses:   “Shark Bite”  “Bar Fight”  “Snowboarding”  “Alligator wrestling”  and “Parachute got tangled”.  I do that because when I tell them the whole breast cancer connection,  9 times out of 10 I hear this response:  “Well, it’s better than the alternative.”  But people respond the way they do because they have no idea about what it is like to live with Lymphedema.  And if you are a new breast cancer patient and haven’t been warned about the ins and outs of Lymphedema, you do not understand either.

Recently, I got an email from Jan, who had completed “Red Devil” Chemo and was in the middle of Taxol.   She had some questions for me.  One was her arm was bothering her.  After we wrote back and forth, she told me she had 18 lymph nodes removed during a Mastectomy.  I told her that her arm symptoms definitely sounded like Lymphedema warnings and that she should get to a certified Lymphedema therapist immediately.  Jan wrote me back just a tad perplexed.  Not one person – her breast surgeon, her Oncologist, her family doctor – NO ONE had told her she was at great risk for Lymphedema.   My telling her was a total and complete surprise to her.   She was horrified to know that her medical providers neglected to tell her this extremely important fact!!  Jan lives in a rather large city in California.  This should NOT be happening!

Jan is not the first person I’ve heard from that has never been warned about Lymphedema.  It still shocks me!  Since I have to live with the challenges of Lymphedema every day of my life, it is so frustrating to me that women are not warned about this great malady while going through breast cancer treatment!

Brenda from North Carolina and I became acquainted after she wrote me to tell me she was the fashion diva of the chemo ward when she bought hats my online store, Hello Courage  (www.hellocourage.com)  Brenda has a great sense of humor and always makes me laugh.  Brenda has been hit hard by a major Lymphedema onset shortly after her Mastectomy and lymph node dissection which happened after chemotherapy.  These are Brenda’s words about her emotions as she deals with Lymphedema.  Brenda has had such a flare up, she has to use a Flexitouch pump.  With Brenda’s great sense of humor, she has had plenty to say about this huge contraption.  But here Brenda speaks from her heart and tells us her emotions when dealing with the daily challenges of Lymphedema:flexitouch

“Lymphedema is a real hit to the emotional equilibrium. I knew very well, especially after reading your blog, that I was almost guaranteed to have issues, but somehow the reality was nothing even CLOSE to the abstract. The idea of having to wear a glove and sleeve just doesn’t seem that bad… until it’s OMG, MY ARM IS HUGE AND THIS HURTS AND WHY WON’T IT RESPOND TO WHAT WE’RE DOING? And then you look at the pictures of limbs that have gone rogue and just won’t be tamed, and you panic, thinking “Is this going to happen to me? What then?” Suddenly the LympheDivas sleeves don’t look so cute, and Lymphedema gets serious in a big hurry!

I think the timing is part of the whole emotional aspect of Lymphedema as well.   It seems to fall under the “last straw” category, after you’ve already fought through everything else in breast cancer and are, quite frankly, worn down and hanging on by fingernails. I’m pretty good at putting on the happy face and plodding forward, but when you’re still weak from Chemo, having ungodly nerve pain after the mastectomy, dealing with seromas, and cording, and radiation burns, it’s just the cherry on top of the big ol’ crap sundae!  And while you got through chemo, and healed from surgery, finally, and your skin grew back after radiation, are dealing with the side effects of Aromatase Inhibitor drugs, the harsh reality that Lymphedema is forever washes over you. It’s just too much!”

Amen, Brenda.  Well said!  So PLEASE ladies, if you have had one or more lymph nodes removed, make sure you make an appointment with a trained Lymphedema specialist or get to a Lymphedema class. You can find a therapist or a class at larger cancer centers or a larger hospital.   The reason it is necessary for you to do this is to find ways to PREVENT Lymphedema from occurring.  Many of us couldn’t have stopped it from happening.  But many of us CAN!  Please take this warning seriously.  Many surgeons and oncologists tell their patients, “Oh you only had 2 nodes out, you are not at risk.”   That is WRONG information.

I’ve written much about Lymphedema in the past which was what Brenda was referring to — giving many facts, what to avoid doing, warning signals, what you need to do if you have had ANY lymph nodes removed.  Please read them again!  It may save you from the realities that Brenda and I both deal with on a daily basis.

https://denise4health.wordpress.com/2013/02/11/learning-to-live-with-lymphedema/

https://denise4health.wordpress.com/2012/08/15/lymphedema-lymph-nodes-and-breast-cancer/

ALSO, please be sure to read the Comments left by other women below!  Very helpful information!!

______________________

Brenda was the fashion diva at her hospital thanks to hats from http://www.hellocourage.com —  big hat sale going on plus Discount Code — check them out and also my wicking sleepwear that helps you sleep while dealing with hot flashes!  THANKS SO MUCH FOR YOUR CONTINUED SUPPORT!

CH-h4clochegraywool1CH-h4activitydenimred1collagewickingpajama

Lymphedema Awareness and Breast Cancer

March is Lymphedema Awareness Month.  I deliberately posted this toward the end of the month because we all put Lymphedema at the end of the line in Breast Cancer.   As someone who lives with the realities and challenges of Lymphedema every day,  I am passionate about warning Breast Cancer Patients to PAY ATTENTION and get help and information about Lymphedema.  Make sure you have attended a Lymphedema Class and  arranged a consultation with a Lymphedema Therapist immediately after breast surgery.  Preventative actions, treatment and knowing what to look for can help your future in a big way.    

If you even have had one lymph node removed, you can get Lymphedema. Surgeons and Oncologists may tell you otherwise.  Do not listen to them!  I have had plenty of letters from women who had been told, “Don’t worry, you aren’t at risk for Lymphedema” by a physician and then BAM!  Lymphedema hits in full force.  Some women have gotten this condition with no nodes removed, but that is more rare.

At the very LEAST, your preventative measures should include 1)  Wearing a fitted compression sleeve when you fly in an airplane – even for short flights;  There is other information out in googleland to the contrary.  Do not listen to it.  I have met two women who have full-blown Lymphedema after a quick air flight.  One had been 20 years out of cancer treatment!   2)  When you are lifting heavy items or moving heavy items, make sure to wear a compression sleeve.   3)  Lots of repetitive motion like shoveling snow, sweeping, mopping could be cause to wear a compression sleeve.  Pretending Lymphedema cannot happen to you does not work!

I got full-blown Lymphedema after lifting three heavy plastic grocery bags with my “bad” arm.  And I had been to all the classes and visited a Lymphedema Therapist.  That is all it took to bring it on and cause me to wear a compression sleeve and gauntlet every day for the rest of my life.  Here is a previous blog post I wrote about Learning to Live with Lymphedema that gives more information: https://denise4health.wordpress.com/2013/02/11/learning-to-live-with-lymphedema/

The following 10 minute, professional video entitled, “Breast Cancer’s Dirty Little Secret”  does a wonderful job giving more information about Lymphedema.  It is definitely worth investing the 10 minutes to watch!

 

PLEASE CHECK OUT MY ONLINE STORE FOR CANCER PATIENTS:   CH-collage

Learning to Live with Lymphedema

LymphedivablogWhen the title of this Blog Post entered your Inbox, let’s face it, your heart did not go pitter patter with excitement.  Please try to stick it out!!!  You will learn something and I will attempt to give you a few laughs along the way!   You and your Lymphatic System have something in common–   misunderstood and under appreciated. There are 500 to 700 lymph nodes in the body. Who would think if you have one or a few of those removed, in my case 14, it could cause so much trouble?

My Lymphedema was under control until I picked up those 3 plastic bags of groceries with my impacted arm and then my POOF of Lymphedema came back with a vengeance. Now you cannot yell at me because admit it, you have done it and later regretted it even if you have no chance of Lymphedema.  Who wants to make 3 trips from the trunk of the car if you can do it in only 1 trip. And, of course, I had about 50 pounds of items in those 3 sacks because I tell the checkout girl, “put all you can in one bag.” I HATE IT when they put a box of jello in one bag, a bunch of bananas in the next, and on and on until you have about 20 bags with nothing in them, and you get home and you wonder how you can make plastic monkeys for the kids out of all these bags you have sticking out under your sink.  Then the environmental guilt hits you, and it is a downward spiral from there.

Starting with that one mindless “carry the heavy groceries all at once” moment, my arm started swelling up, and then my hand, and then my fingers until it was larger than it had ever been. It really scared the you know what out of me. Suddenly, all I could remember was the only woman I knew who had a Mastectomy when I was a child. She had one huge arm and one smaller arm, and she always wore sleeveless tops. Suddenly, I felt great compassion for that woman.

Yolanda is an inspirational Stage 4 breast cancer survivor from my internet support group. She and I were discussing Lymphedema and our latest flare ups. Very reluctantly, Yolanda and I are realizing that we are dealing with a chronic condition that changes our lives forever.  It is just now dawning on us how much daily time and attention Lymphedema requires.

My Lymphedema first showed itself during Radiation treatment which is common. The lymphatic system is compromised because the onslaught of radiation overwhelms the system. An occurrence can happen  20 years or more after surgery!  Lymphedema may not be present and then one wrong move and PRESTO!

For those of us at risk for Lymphedema things that cause flare ups in addition to heavy lifting is anything that  requires repetitive motion like shoveling snow, sweeping with a broom,  gardening, exercising, mopping, raking, any other kind of shoveling like dirt or digging,  vacuuming, typing on the computer, extreme heat or extreme cold, and injuries to the arm of any kind.     This is why you must wear a compression garment when doing those things.  Many women find it necessary to wear a compression sleeve every day.

YOU CANNOT HAVE any needles – blood tests, shots, or blood pressure taken in your arm at risk.  This is imperative!  I also heard from one woman who got Lymphedema after a manicure!  Even insect bites can flare up Lymphedema!

When flying in an airplane it is ABSOLUTELY NECESSARY that you wear a compression sleeve or wrapping if taught to you by a Lymphedema Specialist. One of my radiation nurses was a 20 year breast cancer survivor.  After 20 years, she figured the risk of Lymphedema was over, so she took a short 1.5 hour flight without a compression sleeve. When she landed her arm was 3 times its size and she has had to deal with Lymphedema ever since.  Another gal I met at my Oncologist’s office had the very same experience 3 years after cancer treatment – one flight without compression and bam!

All of this sounds rather ridiculous, doesn’t it?  I mean, come on, sweeping your front porch and suddenly your arm swells up for the rest of your life?  This all seemed outrageous to me too, even though I have been to two classes outlining the potential horrors.  I had to test it all out to see if  the crazy person who made up these rules was right! I hate stupid rules!   Well, guess what?  Whoever “they” is, was right.  I had to learn the hard way that it is necessary to follow the Lymphedema Rules.  UGH!

And if your closest and dedicated friends and family still ask, “How are you feeling?” they sure don’t want to hear about Lymphedema.  During your fight for life during cancer they sent you the cards, baked you the muffins, visited you,  took you to Chemo, bought you the gifts and listened to your complaints. My friend, Anita, even attended a Lymphedema Class with me!  Talk about above and beyond!  But, let’s face it, hearing about Lymphedema is about as exciting to them as I used to get when my grandfather would start talking about GOUT, and before I had a chance to yell, “No, Papa, don’t do it!” he was taking his sock off and showing me his big, swollen red toe!

This breast pillow/seat belt cover for the car has helped me so much.  I have it for sale in my online store for $19.90 with free shipping.  The compression of the seat belt caused flare ups in my Lymphedema – this helps!  Click on image!

 

BreastBuddy1

I am so fortunate to such a great Lymphedema Specialist, Mary Berg, with the Mercy Health System in Toledo, Ohio.   She has helped me so much with lymphatic massage, education, and the correct compression techniques for my hand, arm and trunk.  And oh yes, you can have Lymphedema on your body called Truncal Lymphedema which requires compression garments on your chest area.  More fun!  Mary knows who I am because she has had plenty of other patients just like me…non-compliant.  We don’t follow the rules and then come screaming and crying to Mary for HELP!!

If I would have had on my compression sleeve, I could have lifted those bags of groceries probably without incident. But I did not have it on because I was not expecting anything out of the ordinary (at least that is what I told Mary).  The sleeve pictured at the top is made by Lymphedivas.  Just so you know, the part that covers the hand is called a gauntlet.  They are certainly a lot cuter than plain and boring beige.  Lymphedema garments now take up a whole area of my closet.   I was recently fitted for a Juxtafit sleeve which velcros on rather quickly.  This is great to put on if you are going out to garden, going to exercise, or do anything that you need protection in a hurry.  The picture below is the Juxtafit and has to be measured by a professional.  I will admit, it is handy (no Lymphedema pun intended).  It isn’t my favorite thing to wear, I must admit.  It certainly is not every women’s idea of high fashion.  But it works!

juxtafit

Oh, one last very serious thing, Cellulitis — Cellulitis is a skin infection which can occur very easily with Lymphedema if you have an injury to your hand or arm. If untreated, Cellulitis can be deadly.  Even a small burn or cut can put you at risk. Therefore, as a precautionary measure, it is necessary to wear gloves while doing dishes and housework, yard work, or any heavy duty work that puts your hand/arm in danger. Insect bites can cause cellulitis so in warm months, it is important to wear insect repellant and sunscreen as even sunburn could cause cellulitis. I have to carry with me anti-bacteria gel and antibiotic lotion to apply immediately even if I get a paper cut or hangnail!  And at the first sign of any infection, I have orders to get to the hospital Emergency Room immediately.  And if you are traveling, in some cases it is  wise to have an antibiotic with you.    I don’t want to die of Cellulitis because I got a cut on my finger while peeling potatoes after I fought my way through to become a Breast Cancer Survivor.

If you are a Breast Cancer Patient or Survivor and have had even ONE LYMPH NODE REMOVED, get to a Lymphedema Class and find a Lymphedema Specialist immediately.   (update:  I have now heard from two women who have Lymphedema with no nodes removed!)   If your local hospital does not offer one, find a major breast cancer center which does.  It is worth the drive to find out the dangers and how Lymphedema can be avoided and treated.  It is absolutely IMPERATIVE that you learn about this chronic condition – how to prevent it, how to control it, and what to do if you already suffer from it.

Lymphedema, Lymph Nodes and Breast Cancer

Lymphedema is a dreaded word for women who have had lymph node involvement  and removal during their Breast Cancer.   Lymphedema is described as:   “Lymphedema occurs when the lymph system is damaged or blocked. Fluid builds up in soft body tissues and causes swelling. It is a common problem that may be caused by cancer and cancer treatment.  Lymphedema can cause long-term physical, psychological, and social problems for patients. ”

I am one of them.   Some women have difficulties right away, others have none or it can hit years later.  Mild Lymphedema happened to me immediately, then got progressively worse.  I had 14 lymph nodes removed.  The greater the amount of lymph nodes removed, the greater risk for Lymphedema.  Before I sought treatment, my arm would be 1 to 2 inches larger around than my other arm.

At first Lymphedema is just another overwhelming thing to think about and deal with when you are already on overload with Breast Cancer and treatment.  But with appropriate care, it truly can become a manageable situation.  My Lymphedema is under control since I have learned how to self-massage, wear my sleeve or wrap my arm when I fly in an airplane or do repetitive work (like gardening, trimming trees, raking, shoveling snow, using the sweeper, heavy cleaning and lifting, etc.) I also see a Lymphedema Therapist/Specialist two to four times monthly for massage and treatment.

Recently, I met two women who began suffering with Lymphedema after no one told them it was necessary to wrap your arm or wear a Lymphedema Compression Sleeve when flying. One was a nurse who was a 10 year Breast Cancer Survivor.  She thought after all that time she would not be afflicted.  The other woman was less than one year out from surgery, but no one told her about compression and flying in an airplane.   So if anyone tells you that you don’t need to do this while flying, don’t believe them!  There are studies out there that say it is not necessary.  But these women certainly convinced me!

Here is my advice:

1)  Find a Lymphedema Class – many hospitals and Breast Cancer Centers offer these classes to educate patients at risk for Lymphedema.  I have attended two free classes at two different hospitals, and the information given was invaluable to me. If you live in a small town, call the largest hospital or breast care center in the closest larger city.  It would be worth the trip to attend a class.  If they don’t have a class scheduled, ask them if they would consider having one.

2)  Locate a Certified Lymphedema Specialist – I found mine at my local hospital.  She is a gem and has given me so much knowledge and help!  Call the Physical Therapy departments at local hospitals to see if they have one.  Unfortunately, there is not an internet central registry that I am aware.

3)  If you have trouble locating a Certified Lymphedema Specialist, contact your local Breast Cancer Support group or ask your Oncologist or Surgeon.  Don’t expect your Oncologist or Surgeon to tell you – they may not even talk about Lymphedema to you.

3)  Check if your insurance company will pay for visits to a Lymphedema Specialist – mine are covered under Occupational Therapy.  If it is not covered, find out if you can affordably visit a Lymphedema Specialist to answer questions, teach you self-massage, and exercises.

4)  Do your self-massage daily or when needed.

5)  Do your exercises daily.  I was given a list of exercises by my Lymphedema Specialist and try to do them faithfully.

6)  If you are going to undergo Radiation Treatment, your body becomes even more sensitive to Lymphedema.  My hospital provided a massage therapist to help the lymph system during this time.

7)  Have your Lymphedema Specialist measure your arm, or if you can’t afford one or if insurance does not pay, keep regular measurements of your arm.  Measure your hand, your wrist, midway between wrist and elbox, and 2 places in upper arm.  Compare these measurements with your unaffected arm.

8)  If you are going to fly in an airplane, even short trips, it is necessary to wear a compression sleeve or wrap it correctly.  If you have a 2 hour plane trip, you are to wear the sleeve or wrappings for the duration of the plane trip, then for 2 hours after you land.

If you are prone or suffering from Lymphedema, it is necessary to prevent infection in that limb.  For example, wear gloves when doing yard work, wear insect repellant to avoid insect bites, and carry anti-bacterial or neosporin with you if you get a cut.  You want to avoid infection that could lead to cellulitis or something even more serious.

Lymphedema has become a way of life for me.  I elevate my arm when I sleep which helps me.    And since I am a gardener, I have finally learned my lesson.  I usually get a cutter in my hand and before I know it, the tree or plant is trimmed.  Not any more.  I have suffered enough after these episodes, so I wear my sleeve now!

If you are overwhelmed by it all, don’t despair.  It does get better with knowledge, education and time.  There is hope and healing for this misunderstood challenge.