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Topic: freaked out

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

Posted on: Jun 5, 2006 07:00PM

cheryl58 wrote:

Hi, okay now I am really freaked out here. Due to have bilateral mastectomy (one prophylactic for lobular ca). This means that I will have to have needles, blood pressure forever in my foot? YUK!!! Just the thought of that turns my stomach. And if bilateral does that also mean that I cannot take my Saturdays anymore and clean my house? I figured I wouldn't be able to carry laundry baskets and that was about it. I am definitely going to have to rethink this bilateral thing. Thanks.

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Jun 5, 2006 07:57PM marywo wrote:

are you having ALL lymphnodes removed from both sides? i'm guessing not...i had all from the cancerous side and a few prophylactically on other side....you can still get blood pressure taken from the other side...and if you are in an accident or something serious it won't kill you...they just want you to avoid that kind of pressure if you can...just to keep lymphdema at bay....but i'm no doctor ask your surgeon EXACTLY the ramifications most docs will tell you every little thing if you ask the specific questions and unfortunately, yes, you will be able to clean your house on saturdays. i had my double mastectomy and reconstruction mid december and for the first 6 weeks i never thought i'd be the same person again but in time most things will return.....i was just thinking that this weekend when i was lugging all my groceries up the stairs and putting them away that i couldn't do that in january but most things are back...or on their way back to normal life.....you will just need a little take-it-easy time in your life...it won't be forever...just like chemo...when you are going through it it seems like forever but it does have and end....talk to your doc...or me..or all of us!

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Jun 5, 2006 09:03PM centaur-2006Apr22 wrote:

mary,

Is it standard proceedure to take axillia nodes on a propylactic?
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Jun 5, 2006 10:29PM Binney4 wrote:

Cheryl, yikes! I can taste your frustration with this situation you're facing, and I'm so sorry. Once we begin this bc journey it seems like all the decisions we have to make are hard ones. But this one can be sorted out. Lymphedema (LE) is nasty, yes, but it's not even in the same league as breast cancer. Do whatever you need to lower your chances of ever having to face off with the bc beast again.

After that, you can make a completely separate decision about what precautions you will or won't take to avoid LE. No one can tell you whether you will or will not develop it, because there has not been enough research to determine all of the risk factors involved. What many of us have experienced is that our doctors know little about LE, probably because our medical schools do not teach much about it. So we have to educate ourselves about practices that reduce our LE risk. (You can find good information about risk reduction at the National Lymphedema Network web site: www.lymphnet.org ). Once we have the facts, we still have the power to decide what we're going to do with the information. If the thought of a blood draw in your foot turns your stomach, then you're not likely to decide to do it. A prophylactic mastectomy doesn't take away your right or ability to make your own decisions about your health care. So it's true there's a risk if you decide to use that arm for blood draws and blood pressures, but maybe it's a risk you're willing to take. On the other hand, maybe with further information and time to consider, you'll find you'd rather work out the natural and perfectly understandable squeamishness you feel about it. It's entirely up to you, and deciding it all at once is not necessary.

Here's the bottom line: if you develop LE there is help. There's treatment available that can reduce the swelling and keep it in control and even reduce the risk of spontaneous infection. Best news of all: the treatment is non-invasive and does not involve a single drug of any kind. Like I say, compared to the bc: NO CONTEST!

Hope some of this helps! Let us know what you discover--we all know how hard this is and share your frustration with the whole stupid thing. And for sure we're here for you.
Binney
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Jun 5, 2006 10:35PM Binney4 wrote:

Hi, centaur,
Prophylactic mastectomies don't usually involve removing axillary nodes. The problem here is that axillary nodes don't have to be removed in order for there to be a LE risk. All of us who are treated for bc are at risk for LE, some more than others. Unfortunately, it's not possible to know anyone's exact risk, since we are all different and a lot is still unknown about LE. Bummer!

Be well!
Binney
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Jun 6, 2006 03:59AM rhymeee wrote:

Binney,

I saw those posts and was about to freak myself as I am thinking of a propylactic. Thanks for yet more good information.

I have one frozen shoulder, and sure dont want my axillias touched!
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Jun 6, 2006 04:12AM centaur-2006Apr22 wrote:

Hi Binney,

Thanks so much for your reply. Feeling better now !
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Jun 6, 2006 04:54AM NPat wrote:

Speaking from a healthcare provider standpoint. We are to do everything possible to "do no harm". If that means we are to take blood pressures with a thigh cuff, or draw from a foot... then that is what we must do to protect the well-being of our patient.

Be prepared for the vast majority of healthcare providers to give you the wrong information on LE prevention/treatment. Become informed and a self-advocate. Remember, patients "employ" us to provide comprehensive and safe care. We expect quality care from the Holiday Inn, our childrens' teachers, the auto mechanic... don't we? Why would one settle for less with our healthcare provider?

Don't be afraid to assert yourself. I am a NP and interviewed my prospective providers before I aggreed to treatment. As far as LE... I have said many times on this board how dumb I was. My LE therapist, Adrienne, set me straight. I will always be thankful to her for her time and provision of correct information.

I do not recommend blood draws or BP's on any affected arm. You must, however, get a Rx from a provider to have the draws from a foot since there is increased risk for infection and most of us can't walk on our hands. Thigh cuffs are available... or should be in every office. If you wish your BP to be taken on your thigh, wear appropriate clothing to facilitate that.

Take care. Remember, you have a voice in your healthcare decisions.

Pat
NPat
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Jun 6, 2006 05:03AM jinky wrote:

Hi Chery, I had mastectomy on left side and a prophylactic on the right. I had 11 nodes removed on cancer side.The reason i got LE was because i stupidly lifted a tv and i knew i shouldn't. I have it in my hand also.
I choose to get needles ....blood pressure in my right arm and have been for 4 yrs with no problems.
I had no nodes taken. I am not sorry i had my prophylactic as the fear of cancer is gone.
If i get LE on my right i still feel i did the right thing and that i am doing the right thing.
There are no guarantees. A lot of womwn who has had breast cancer never get LE. Hopes this helps you. LE hugs jiny
age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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Jun 6, 2006 03:10PM cheryl58 wrote:

Thank you all for responses. I think that I over-reacted, but it all sounded so scary and awful. I thank my lucky stars everyday for this forum and all you wonderful ladies. I don't know where I would be without you!!

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Jun 11, 2006 09:39AM CurlyBrunette wrote:

You dont even have to have any breast surgery to get LE. People just get it for no reason at all. I asked my Dr if there was a risk after my surgery and she blatantly said NO, meanwhile I got it when it could have been avoided if she sent me to an OT or PT sooner. I have an earful for her when I see her on the 15th because I am having a bilateral in August and am extremely nervous about the LE getting worse. At least I am prepared this time.

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Jun 16, 2006 02:16PM sherry7 wrote:

Wow, such good information and great hearts here!!! I am one of the ones Binney is referring to, I did not have nodes taken, did have mast. I cleaned my house and picked up grandson, next day it was the start of LE. Freaked, you didn't over react at all in my opinion. I am a massage therapist and if you wanted to see a reaction, when I figured out what was going on, it was a doozy. Take care of your arms, body and mind. Don't take chances, unfortunately no where in my bc info was I told that six months after surgery something like this could happen, I was just feeling strong...always a timing thing. In reality like binney said, its not cancer and I am learning to deal with it. And Pat, thank you for being our advocate I am dismayed that this condition is so little studied when it is so common. I worry for the bc survivors that have symptoms and just think it can't be related. Sisters and brothers we need to just keep talking and supporting. I am personally using myself in an experiment. I am having Cranial Sacral sessions weekly, there have been possitive results, I am almost getting excited....love and light, sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+

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