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

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15 thoughts on “Lymphedema Warnings

  1. Thanks Denise, for the great “post”.  I am so proud of you for warning other women of the dangers of lymph edema.  So sad — and shocking — the medical professionals seem to overlook this very important aspect of breast cancer surgery. You are an angel.  Keep up the good work.Love ya,Auntie M

  2. Thank you so much for this article. I had a lumpectomy and radiation. The doctor only took 2 lymph nodes so I thought I was in the clear. Nope….. but my trouble is in my breast. I have so much fluid and have been to multiple therapists. Finally, yesterday I think I have found a good one and is going to get me the machine to help. I didn’t know even lymphodema had stages but I guess it does and I am in stage 3 because of my skin problems because of it. I have read articles that trunk lymphodema is on the rise because of the increase in lumpectomys. I really enjoy your article…. keep them coming!

    • Pamela, so sorry about your truncal Lymphedema. I so much appreciate your posting,
      because I did not realize this was on the increase because of so many lumpectomy surgeries,
      but it makes sense!
      I had truncal Lymphedema in the beginning, but it has toned down quite a bit. I hope
      yours does as well. Getting the proper therapy is imperative! Thanks for shedding more
      light on an affliction that does not get the attention that it should!

  3. Hi Denise, thank you for your timely article. First of all, you have such a lovely winter picture on your site so thank you for that! I was diagnosed with breast cancer this past March & my cancer team wanted to do the sentinel lymph node surgery first & felt pretty confident there would be no cancer in the 2 nodes they were planning on removing but I had cancer in the very 1st one so 19 more nodes were removed for a total of 21. I was given a pamphlet about lymphdema after the surgery but no one on the team mentioned how to be pro-active to help prevent lymphedema. It was so depressing to see pics on line with women having lymphedema in their arms. At my breast cancer support group a few months ago we had a guest speaker who was a local physical therapist who specializes in lymphedema prevention & treatment. I was so shocked to hear the info she shared & can’t believe doctors/nurses aren’t sharing this very important info with women who had lymph nodes removed. I was able to see this PT for 6 visits & learned how to do massage to help prevent lymphedema & I do it every single day. I recently completed 5 months of chemo & will be getting a mastectomy soon. I am just so grateful there was a local PT who was trained in lymphedema prevention & massage. But keep in mind that not every PT will have this training. I first went to a local PT clinic where I was told there is nothing to do to help prevent lymphedema! I am just go grateful my breast cancer support group leader knew about this PT. Fortunately, I have no lympedema in my left arm but I did have the cording under my arm & I never even knew what that meant as the doctors/nurses never said a word but this wonderful PT has been able to break thru the cording with deep massage & showed me how to do it at home. Good luck to others in finding a PT who has this valuable knowledge.

    • Hi Marla, thanks SO MUCH for sharing your story with us! A great Lymphedema therapist is
      absolutely invaluable! I am so glad you found one! You are exactly the person I think of
      that had so many nodes removed, but doesn’t get properly trained on self-massage and the
      dangers of what to avoid! And that cording is so uncomfortable! Mine went away as well
      thanks to a great therapist!
      Congratulations on being done with chemo. Keep up with the PT if you can! Sending my best!

  4. Great post Denise : )
    I had a sentinel node biopsy only, one or two nodes taken….thus far I have not had any symptoms.
    I was aware of this possible condition from my own reading before hand as my husband developed it in his neck after his surgery…13 nodes removed. He learned massage techniques and today 4 yrs. later
    it mostly stays away…some days he tells me he feel tight and you can see under his chin it looks a bit poofy.

    In our area, at the time, we had no “certified therapists” that dealt w/this issue…a physical therapist that hubby was working w/ went to extra effort to find info and work w/ hubby….I thought that was good of her. Such an awful thing to deal w/ for sure ! I like your alternative responses to questions ! and I agree w/ your thought…people just have no idea : (

    I have two lady friends here .post breast cancer. that do have the condition and wear the sleeve/glove.
    Another gal that had mastectomy 5 yrs. ago is just now developing symptoms! and of course is very sad…she is being proactive and doing all she can at this time.

    I talked to my surgeon and oncologist and as you have said they don’t really comment much about it !
    It seems they play it down….saying oh, not a high percentage develop it :/
    I read on it a lot and I post articles on Facebook for my local support group ladies and others to read.
    I sure am about educating…just as you have here ! THANK YOU : )

    • Cindy, thanks for writing! I appreciate it very much! So sorry to hear of your husband’s
      dealing with Lymphedema! Never thought about it in the neck! That was incredible for the
      therapist to go the extra mile to help your husband!
      It is quite amazing that so many surgeons and oncologists play down Lymphedema. It makes
      no sense to me!
      I am so glad you have not developed it, but are educated and no how to help prevent and what to look
      for to help avoid it! My best, Denise

      • Hi again Denise…your response made me think of another gal I know… anywhere we have lymph nodes removed …that area of the body can develop lymphedema…this gal had cancer in her lower abdomen and had nodes in her groin area removed…she developed lymphedema in her legs…thus wears compression sleeves on both her legs ! It is truly amazing… She is an RN and works full time…has a great sense of humor about it all, imagine ! Keeps on going. Until next time. : )

      • Thanks, Cindy. I know, that would be so difficult! I met several patients at a
        Lymphedema class who got leg lymphedema after melanoma surgery! You just don’t
        think of all those things! Thanks, Cindy!! 🙂

  5. Similarly, I was never spoken to about lymphodema by anyone either. Not my surgeon, not my oncologist, not my radiologist. After reading about it on your blog, Denise, I asked my oncologist about it and she said pretty much what was noted in your post: “you only had 2 nodes removed – it will NEVER happen to you.” After driving on a long trip, I noticed some pain and swelling under my armpit. Sure enough, it was a mild form of lymphodema. I had to go through OT & PT and learn the lymphatic massage, etc. Mind you, it’s a mild case and I cannot imagine what some women have to go through. But it would have been nice to have some support from my doctors and maybe I would have had a stronger mindset on the prevention piece. Thanks for all you do to make people aware and to inform women with the information they need!

    • Thanks so much for your kind words! I so much appreciate your sharing about
      2 nodes removed and bam! What no doctors warned you about during breast cancer!
      Amazing, huh?! Thank goodness you were proactive and did something about it sooner
      rather than later!
      Sending my best for you in the NEW YEAR!

  6. Hi Denise. This post really hit home for me. Like many others, I too, wasn’t informed about lymphedema after my lumpectomy. I only had two nodes removed. Two months after I finished radiation I had my first bout with cellulitis in my breast (due to lymphedema) which was something else that wasn’t on my radar (I hadn’t even heard of it!) I was hospitalized on major antibiotics for 5 days. Fast forward to last May, nearly a year to the day of my last incidence I was hospitalized once again for cellulitis due to lymphedema. Long story short, I had a mastectomy with reconstruction (tram flap) in July to prevent the recurring cellulitis. On Wednesday I’m having a reduction on my other breast and getting a nipple on my foob. I’m hoping this is that last surgery I’ll ever have. My heart goes out to everyone with lymphedema. The good news is they are experimenting with lymph node transplants and I believe it’s very promising. Wishing everyone the best in the new year. WooooHooooo for 2015!!💕 Sheila

    • Sheila, ohmygosh, I am so sorry to hear your story, Sheila! Cellulitis
      due to Lymphedema is so serious, even deadly! It makes me so angry when
      I hear that women are not informed about this! And then you have to go
      through a Mastectomy to prevent recurring cellulitis! How awful.
      Wishing you well on your Wednesday surgery and praying it is your last. Thanks
      for telling us your story! My best, Denise

    • Sheila, ohmygosh, I am so sorry to hear this! Cellulitis
      due to Lymphedema is so serious, even deadly! It makes me so angry when
      I hear that women are not informed about Lymphedema and this aspect of breast cancer.
      And then you have to go through a Mastectomy to prevent recurring cellulitis! How awful.
      Wishing you well on your Wednesday surgery and praying it is your last. Thanks
      for telling us your story! My best, Denise

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