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Topic: time for 2nd mastectomy!

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

Posted on: Oct 18, 2017 09:21AM

glennie19 wrote:

Well, I'm having a 2nd mastectomy next month for prophylactic reasons. I'm using a different surgeon this time so hoping for better info on LE prevention! However, I know there are different viewpoints out there. How high to lift the arm after surgery for example. Do I spider crawl up the wall,, as far as possible or only shoulder high?

Would greatly appreciate people chiming in with advice to help me prevent issues this time. I currently have truncal on the Left side, and hoping it would spread to the right side. But since it is prophy,, no nodes are being removed.


thanks!! glennie

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Oct 18, 2017 09:27AM glennie19 wrote:

OH, yeah, and the surgeon says I can't wear my usual breast binder for 6 weeks after surgery, cuz the tightness could affect healing of the scar! EEEK!! that is my go-to item to keep it under control.

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Oct 18, 2017 10:34AM Binney4 wrote:

Glennie, don't know if you know and use self-MLD, but if so you'll want to consult with a good LE therapist about how that routine will change now. You'll need to learn to redirect fluid from your left side downward, not across to the right axilla. If you haven't been doing self-MLD recently, now's the time to brush up on it, since it will be your best method of keeping things stable when you can't use the binder.

Yeah, keep your arm movements below shoulder level for the first 10 days or so. That gives the delicate, insulted lymphatics their best chance to heal. Elevation of your arm when you're lying down and staying really well hydrated are important too, along with some deep abdominal breathing throughout the day.

Make sure both arms are protected during surgery and following. A couple of bright pink LE armbands or those Lymphedivas alert sleeves might be in order!

Free from the ReidSleeve people:

http://www.lymphedema.com/alertband.htm

$40 each from Lymphedivas:

https://lymphedivas.com/hospital-sleeve/

(And of course, you'll need a supply of chocolate to have on hand for recovery!)

Please keep us posted and let us know how you're doing!

Gentle hugs,
Binney

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Oct 18, 2017 11:34AM - edited Oct 18, 2017 11:35AM by hugz4u

Glennie. I'm in your back pocket. Let us know how it goes so we can help. Binney covered it well.

I had phrohy on left with no nodes ot and it went fine. I still keep a eye on that arm but admit it's my workhorse arm.

One thing that happened to me was I said no to arm needles. Well the nurses have long shifts and get tired. When I was still drugged I saw my original overtired overworked nurse come at me with a needle. I had sense to get out of my stupor and tell her no. She said oh yah. I'll put a big sign above your bed reminding all. That worked!

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Oct 18, 2017 12:16PM SpecialK wrote:

glennie - good luck!

TLC also has this LE warning sleeve for wear in the hospital. I was surprised when I had surgery in one of the BayCare hospitals here in Tampa, they had the red version in pre-op and put one on me. They also posted the sign above my bed.

http://www.tlcdirect.org/Lymphedema-Alert-Sleeve.html?did=42

BMX w/ TE 11/1/10, ALND 12/6/10. 14 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Oct 19, 2017 08:17AM glennie19 wrote:

Thanks for all the advice!! I do have that pink bracelet that I've worn for my last 2 surgeries and I dug that out of the closet. I like the sleeve idea too, Special K.


And Binney, I will have plenty of chocolate!!


thanks, glennie

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Oct 19, 2017 05:59PM Binney4 wrote:

Glennie, you need TWO bracelets now.

(And double the chocolate!)
Be well,
Binney

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Oct 19, 2017 07:38PM glennie19 wrote:

Binney, since it is a prophy,, and they are not taking any nodes,,, do I need the same precautions on that arm as I do with the affected arm?


double the chocolate for sure!!


thanks, glennie

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Oct 19, 2017 09:24PM Binney4 wrote:

Glennie, that's up to you, of course. My second mastectomy was also a prophy, no nodes purposely removed, and my LE actually started on the second side. Since you've already proven you're not entirely immune to LE SickTired you might want to treat both sides as at risk. You'll get some argument on that, but it's your arm, and as you know only too well, LE is forever.

Gentle hugs,
Binney

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Oct 20, 2017 07:25AM glennie19 wrote:

OH, UGH, Binney, that yours started on the prophy side. That stinks. That will make IV's and blood draws, and BP's lots of fun. NOT.

Thanks for the advice!!


Pass the chocolate!


Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Oct 20, 2017 03:46PM LisaAlissa wrote:

You may also want to discuss it when you are admitted. Some (most?) hospitals have their own system of warning bracelets. So while your bracelets are good, you'll want to make sure you get their version (which might not be pink!) so that when you're not able to speak for yourself, your bracelets will do it for you.

Best wishes w/ your surgery,

LisaAlissa

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