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Topic: bilateral mastectomy and lymphedema

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 18, 2011 05:47AM

bcisnofun wrote:

I have an upcoming bilateral mastectomy with SNB's.  People talk about not having injections, etc. in the unaffected arm.  For anyone who has had a bilateral, how do you manage to not have injections, or carry heavy objects, etc with either arm?  Is it only if you develop lymphedema that you can't do these things, or you need to do these things to prevent lymphedema?  Thank you for your help

Dx 4/29/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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May 18, 2011 05:55AM Towny wrote:

You need to get sleeves and guantlet ... to fly .. to do any heavy work or something that you may be doing all day...

Your arm will feel fatigued and sore ... be prepared. go to a physical thereapist who is a lymphadema certified therapist!! She/ he will inform you of all the things you should do. You should talk to one BEFORE SURGERY AND BE PREPARED!!! ASK ABOUT CORDING!!! TOO!!!

I HAVE HAD TOO MANY CONVERSATIONS WITH WOMEN WHO SAID I WISH I HAD TALKED TO SOMEONE BEFORE SURGERY!!! SO IF YOU CAN PLEASE DO SO!!! IT IS BEST TO BE PREPARED. FLYING YOU MUST WEAR SLEEVES AND GUANLETS!!!

SOME WOMEN NEVER HAVE A PROBLEM WITH ANY OF THIS AND SOME WOMEN DO!! SO BE VERY CAREFUL!! ANY SORENESS .. THROBBING ETC!!! TAKE CARE OF IT BEFORE IT GETS WORSE, THIS IS HARD TO DO JUST OUT OF SURGERY BECAUSE IT IS HARD TO FIGURE OUT IF IT IS FROM SURGERY OR IF IT IS LYMPHADEMA.. ONE CLUE IS IF YOU PUT YOUR ARM DOWN AND THERE IS A CREASE IN IT AND IT DOES NOT GO AWAY.. YOU HAVE LYMPHADEMA.. GOOD LUCK .. IF YOU KEEP A HEAD OF IT .. IT DOES NOT BOTHER YOU AFTER A WHILE. I WEAR A SLEEVE AND GUANTLET EVERYDAY TO WORK AND IT DOES NOT BOTHER ME..

BE CAREFUL OF INFECTIONS.. CELLUITITUS.. LOOK IT UP SO YOU KNOW WHAT TO LOOK FOR.. HOT READ SPOT, FEVER ... ETC.. GO TO ER NO QUESTIONS ASKED.. JUST GET TO THE ER. ASAP BEFORE IT GETS WORSE .. IT WILL NOT GO AWAY WITHOUT IV ANTIBIOTICS.. AND IT WILL NOT GET BETTER UNLESS YOU GO ASAP TO ER!!!

PLEASE TAKE NOTE AND REMEMBER THIS STUFF

Triple neg 10/09 8 cm tumor.. 4/11 mets to bone Dx 10/5/2009, , 6cm+, Stage IV, Grade 3, 2/13 nodes, mets, ER-/PR-, HER2-
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May 18, 2011 06:20AM LeapFrog39 wrote:

once you have lymphnodes removed there is always a possibility of developing lymphadema, but that doesn't mean that you will.  Keep a close eye on it.  When/if you notice swelling, if you get into to see an LE specialist in short order, you can keep it under control.

My LE specialist actually recommends weight lifting, but I didn't start that until about a year after the surgery. You will definitely have some restrictions for a while after a BMX. 

I don't let them touch my right arm with a needle or blood pressure cuff, because I don't have any lymph nodes on that side.  I've had a few nodes removed from the left side too, but I generally take my chances and let them take my blood pressure or draw blood on that side. Some people will tell you to NEVER do that and they may be right.  I'd talk to your doctor, do some research, weigh your options. They can take blood pressure in your leg, but unless you have a port, I'm not sure where they would draw blood from........

I'm able to keep my LE under control with regular Manual Lymph Drainage, which is kind of like a massage technique to help push the fluid out of the tissues. A good LE certified PT can teach you how to do this. It's a little time consuming, but once you have a routine down it's pretty easy and I find it relaxing. I generally only wear my sleeves when I have a flare up, or when I exercise, and I've also been told to wear the sleeves when traveling by plane.

~ Wandalynn ~ ********** Diagnosed 3/13/2009 from FNA, 39 years old. BMX with full axillary dissection on right side.Final pathology report: 4cm+ high grade DCIS tumor with micro-invasive idc, 2/32 lymph nodes. ER/PR-, Her2+++, Stage IIa Surgery 4/14/2009 Lumpectomy: Right; Lymph node removal: Sentinel, Right Surgery 5/4/2009 Mastectomy: Right; Lymph node removal: Underarm/Axillary, Left, Right; Prophylactic mastectomy: Left Targeted Therapy 6/30/2009 Herceptin (trastuzumab) Chemotherapy 6/30/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 2/28/2011 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/9/2012 Reconstruction (left); Reconstruction (right)
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Jul 18, 2011 06:38PM Ondagrow wrote:

Hi All...

I AM SCHEDULED TO HAVE DIEP FLAP ON AUGUST 17...  Left delayed...  Right immediate...

I am perplexed...  I am upset because they want to take sentinel nodes from my non-cancer side...  My MRI results from July 14, states no cancer...  I do not want them to put my Right Side in jeopardy for lymphedema...

I understand PRECAUTION...  I UNDERSTAND THAT ONCE YOU REMOVE THE BREAST THAT THEY CAN NO LONGER just do sentinel node removal...  However, if I get a reduction, my nodes can remain untouched...  I BELIEVE IF THERE WERE AN ISSUE, IT WOULD NOT BE AN OPTION... procedure is not a good enough reason...  Why do the MRI...

 I FEEL IT IS OVERKILL...  I am not trying to be combative...                                                            

I need my right arm...  The nerves in my left arm are SHOT...  I am in school for PHD...  I do not want to chance it...  I am right handed...

Where are they going to take my blood pressure...IV...  I AM TIRED OF MAKING DECISIONS...  I THOUGHT I WAS CLOSE TO THE END...

I was not going to mention it...  I cannot deal with this alone...  Any experiences...  I totally understand WHY they want to do it...  However, uuuggghhh...  I research and talked to several doctors...  I thought I had a resolve.  After speaking to medical oncologist earlier today...  I just woke up livid... lol

I STILL DO NOT WANT TO RISK IT...

Has anyone who had non-cancerous breast remove ever challenged the sentinel node removal...

SORRY FOR RANTING...  I AM TIRED OF CANCER...  Today is not a good day....

‘FunNY hOW lIfE sHoWs uP WiTh nO nOTIficATion aNd I mUst aDjust’
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Jul 21, 2011 05:29PM moogie wrote:

I had sentinel nodes removed on the side of what turned out to be a non-cancerous breast. I have bilateral LE and a bilateral mastectomy. I would do it again. And I would bet without node removal I may still have developed LE anyway.

That side had alarming features of a rapid progression in the breast and every precursor through biopsy. All imaging tests stumped the team, and the odds going into surgery were for the need for chemo afterwards.  They thought I would have invasive cancer, but lucked out with LCIS and other changes.

My case was not typical and my imaging results were not typical either. I figured the sentinel node was best for me because I needed my hands for my profession----and was afraid if I needed dissection later the odds of LE were greater. The docs agreed with this assessment and were trying to safeguard my use of my hands as well. We do what we can with what we know at the time.

They can take pressures and draws on your legs and feet to reduce risk. 

I understand your frustration and hope tomorrow is a much better day. If you do not feel comfortable with SNB, make sure the docs hear your voice and honor your choices.