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Topic: lymphedema precautions?

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Sep 13, 2009 11:56PM

Mantra wrote:

I had a SNB (3 nodes removed, 2 were sentinel nodes), and lumpectomy. I am now scheduled for a mastectomy. My surgeon never mentioned lymphedema and I thought that you had to have many nodes removed to be at risk for it. I did some reading tonight and it seems like regardless of how many nodes were removed, I can still be at risk. Now I'm worried. Should I be following the cautions that I've read about and if so, for how long? Forever? 

Dx 7/10/2009, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-
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Sep 14, 2009 12:27AM abinneb wrote:

Hi Mantra -

Can't answer all questions but Beesie has great knowledge of the subject and yes, anytime you have a node removed you are at risk for lymphedema.  If you can follow the link below Beesie has a great discussion about it.  You can also find info under "Tests, treatments, sideffects:  Lymphedema after Surgery"   If the below link doesn't work, you can go to the search area and put in Beesie under the name and lymphedema under keyword and results will come up.

http://community.breastcancer.org/forum/5/topic/740010?page=1#post_1499565

Best wishes

Amy

Bilat mast. Exch 9-'08 And though she be but little, she is fierce. Shakespeare Dx 5/12/2008, DCIS, Stage 0, Grade 3, 0/3 nodes, ER+/PR+
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Sep 14, 2009 10:04AM - edited Sep 14, 2009 10:09AM by Erica

This Post was deleted by Erica.
BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree
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Sep 14, 2009 10:09AM - edited Sep 14, 2009 10:11AM by Erica

Hi Mantra,

As Amy says, even with one node removed, your risk of lymphedema increases. But for most people after SNB, the risk seems to be lower than after a full axillary dissection. If you're only dealing with one side, the precautions you need to take aren't too onerous. From now on, you should have blood pressure, injections, and IVs on the other arm (or on another part of your body). If you get a cut or burn or bugbite on the surgery arm, take especially good care of it to avoid infection.

There are other precautions that can be taken, but those are the most important. There is a wonderful website which will give you lots of information: Step Up, Speak Out. It was started by four women who post on the Lymphedema forum here. The Lymphedema forum is another great place for info.

I had SNBs on both sides (after primary bc in each breast, three years apart). It's a bit more of a pain to take the proper precautions, but still very doable. So far, so good.

Barbara  

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree
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Sep 15, 2009 10:54AM rmcOTR wrote:

Thanks for the site Erica!  I will check it out and pass it along to my friend.  I agree with your input above. 

What I learned years ago from Physical Therapists who specialized in lymphedema management was:  even with only 1 sentinnel node excised, you should have a compression sleeve to wear for prolonged exposure to insects and sun (along with sunscreen, bug repellent and long sleeve shirt), and for flying in a plane. 

I have more on this in my article at HubPages.  I assure you this is not spam.  I get no money for my articles, just trying to help people with what I learned in 20+ years as a therapist. 

http://hubpages.com/hub/Breast-Cancer-Management-After-Surgery

Good luck.

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Sep 15, 2009 03:20PM OneBadBoob wrote:

Meg---I was told by my breast surgeon that I had no risk of lymphedema because I only had two nodes removed, and did not need to take any precautions.  I took it at face value.

Boy, am I sorry!  Here is an abreviated version of "my story."

When I was diagnosed with breast cancer, I chose to have a unilateral mastectomy with immediate TRAM flap reconstruction.

My surgery and recovery went well.  I was told I would not get lymphedema since I "only" had a sentinel node biopsy with only two nodes removed.  No one ever mentioned risk reductions or compression garments for flying, and my breast surgeon was well aware that I planned on traveling as soon as I possibly could.

I scheduled a trip to Europe, halfway through chemo.  Upon arrival at our hotel, I felt my arm was heavy and sore, my breast was heavy and sore and my entire trunk was painful and swollen.  I had no clue what it was, and thought it was just post-surgical swelling, and reactions to chemo. It did resolve in a few days.  I was again sore when I returned home, but that also resolved in a few days.

I then scheduled a trip to Hawaii, on a "milk-run" flight--New York to San Fran to LA to Honolulu to Lihue.  This time my arm, breast and trunk were even worse.  When we returned, I noticed a hard swelling on the cleavage area of my reconstructed breast. 

Of course, I thought this was a breast cancer recurrence and immediately went to see my breast surgeon.  After examining the "hard spot" my breast surgeon pronounced that it was fat necrosis, because I was a former smoker.  I asked her how that could be--it was totally different from the fat necrosis on the lateral side of that reconstructed breast.  She told me that is what it was, and should come back and see her in six months.

So, after finishing chemo and having clear PET and CT scans, my sister and I decided to go to a spa for a long weekend to celebrate.  As we were looking through the "menu" of spa services, I saw a listing for lymphatic massage, which the brochure said was a very light touch, and I decided that I would have that massage.

Imagine my surprise, distress and horror when the massage therapist (a German woman, trained as a lymphedema therapist in Germany) said to me "Do you know you have lymphedema?  It is in your arm, your breast and your thigh.  That hard spot in your cleavage is Stage 2 Lymphatic fibrosis, and it is also starting to form fibrosis on your arm and thigh."

It was like getting "the call" with the breast cancer diagnosis all over again.

The German therapist stressed the importance of finding a lymphedema therapist when I got home and getting appropriate treatment.

I found a wonderful lymphedema therapist, went through the intensive portion of treatment, and now have my lymphedema under control. 

Unforunately, last April I had several air flights within a period of three weeks, and I developed lymphedema in my non-surgical, no nodes removed arm.  See Recent Advances in Breast Cancer-Related Lymphedema of the Arm: Lymphatic Pump Failure and Predisposing Factors, Anthony W.B. Stanton, Stephanie Modi, Russell H. Mellor, J. Rodney Levick, Peter S. Mortimer. Lymphatic Research and Biology. March 2009, 7(1): 29-45. doi:10.1089/lrb.2008.1026.

When I travel, or workout, I always wear my sleeve and a gloves with fingers, a compression bra and compression stockings.

Sigh--if only I knew then what I know now. . .

More research is being done to look for a genetic component of those of us who develop lymphedema with minimal disturbance to our lymphatic systems, while others can have 20+ nodes removed and never develop lymphedema.

As far as lymphedema goes, we don't want any new members to enter our "Swell Girls Society" and are trying to pass the word that indeed even the removal of one node puts you at risk for lymphedema--and an ounce of prevention just may prevent a lifetime of an incurable, uncomfortable condition requiring lots and lots of time and attention.

Please see Reducing Your Risk of Lymphedema at the StepUp-SpeakOut website.

Jane - Dance as if no one is watching!! Dx 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Sep 15, 2009 03:48PM OneBadBoob wrote:

Meg, unfortunately, I was cavalier about the risk--my sister-in-law who had bc and a full axillary dissection some twelve years ago was always ragging on me about my heavy handbag, picking up the dog, flying without compression garments, etc.  But I dismissed her and believed my breast surgeon, and told her things had changed since her surgery.  No, I am not proud of my cavalier atttitude, and want to be an example to others in practicing risk reductions to avoid LE.

Indeed, much research is being done on lymphedema.

While I did not have my surgery at Norwalk Hospital here in CT, that is where I received my LE treatment and worked with the ladies there, and they now have a program where every patient who has nodes removed (even one) meets with a LE therapist for a full informational discussion on risk reductions, measurements of both arms both pre and post surgery, and is given a compression sleeve and gauntlet through a grant given to the hospital by a women who did develop LE.-, and felt that no women should go without a compression garments because of financial problems.

Also, we are working with Dr. Mei Fu, a lymphedema researcher,

  • Breast-Cancer-Related Lymphedema: Information, Symptoms, and Risk-Reduction Behaviors,  Authors: Fu, Mei R.; Axelrod, Deborah; Haber, Judith, Source: Journal of Nursing Scholarship, Volume 40, Number 4, December 2008 , pp. 341-348(8)
  • and were horrified that only Fifty-seven percent of the participants reported that they received lymphedema information after their surgery.

    Dr. Fu has received a grant from the Avon Corporation to begin a research study called "The Optimal Lymph Flow" which we hope one day will be presented to each and every breast cancer patients who had node removed.

    We are also working towards arm measurements being taken at follow up appointments, same blood pressure and pulse.

    Lots of work to do, but we hope to have each and every patient full savy about LE risks.

    Great that the breast center in Minneapolis now refers EVERY bcd surgery paient to a trained LE therapist--

    Indeed, that is our dream that it becomes the standard of care!

    Jane - Dance as if no one is watching!! Dx 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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    Sep 15, 2009 04:14PM BarbAnne41 wrote:

    Thank you ladies for sharing your story.

    Jane-I am so sorry for your experience-wow what a horrible thing for you to have to go through.

    I have to say that my surgeon didn't go over any of the Lymphedema issues, but my radiology oncologist went over all the risk factors to a great extent.-Thank goodness. I honestly had no idea.

    He said everything you all said, except he also added that patients with any lymph node surgery should also wear  what he called baby sunscreen every day. Really it is just SPF 50, but I always buy the baby one.  He said any sun exposure, even arm out the car window while driving can cause a flair up.

    Sometimes I get overwhelmed by how many doctors there are involved in our care, (surgery, chemo, radiation etc..) but I am thankful that with so many they seem to give advice that some of the others neglect to mention.

    Thanks for the advice hope my tidbit is helpful!

    Barbara

    Never regret something that makes you happy. Dx 6/8/2009, IDC, 2cm, Stage II, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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    Sep 15, 2009 04:22PM OneBadBoob wrote:

    Great advice Barbara!  Many of us eroneously think that our sleeve will protect us from sunburn--NOT!!

    And any inflamation in our at risk arm(s) is no good--

    Thanks for the reminder about the sunscreen, and remember insect repellant also!  Damn skeeters or yellow jackets can set up quite an inflammatory response, which we want no part of!

    Warm, gentle non-swell hugs to all!!

    Jane - Dance as if no one is watching!! Dx 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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    Sep 15, 2009 05:16PM Mantra wrote:

    This thread has been an incredible eye opener. My surgeon NEVER mentioned any of this to me when I had my SNB.  Zippo!!! The links were very enlightening and this has made me realize that I need to follow the same precautions as if I had all my nodes removed. I don't want to take any chances and would rather be proactive. Once I've recovered from this surgery, I am going to see a Lymphedema specialist. My SNB was on my left breast and I am left handed. So being my dominant hand, means I really need to be aware of what precautions to take. I am a very active person and want to know that I'm returning to golf, tennis, weight training etc in the correct manner. DH has read the link and said we need to get some of the garments recommended for flying, working out etc. I honestly think doctors should be forced to sit down with people who have lived through the experiences of breast cancer so they can learn things they don't bother teaching them.  Wish me luck tomorrow!!

    Dx 7/10/2009, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-

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