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Topic: How many had only sentinal nodes removed ?

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

Posted on: May 3, 2006 07:18PM

moogie wrote:

Ladies!!

Going for bilateral in a few weeks. One set of sentinels will be removed on one side. How many of you have had difficulty with only the sentinels removed? 6% are projected.Wondered if you gals are out there.
Eager to educate myself.
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May 4, 2006 04:19AM bhull wrote:

I had only the sentinal node removed (one side) with a lumpectomy. However, I also had radiation to the breast area, and lymphnode areas (under arm and neck). I had all this radiation because when I found the lump, there were one or two nodes that we could feel enlarged.

I have learned that radiation can also damage your lymph system. So, there are more ways that your lymph system can be harmed than just having one or two nodes removed.

My warning to you is to get a list of warnings about what not to do....and follow them. It may seem like a big hassle to follow those stupid little rules, but dealing with lymphedema for the rest of your life is a much bigger hasssle!

Trust me!

From one who wishes she'd followed those warnings!
~ Barb
"I am not lost. I am exploring. Life is an adventure worth exploring!" Dx 4/2003, IDC, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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May 4, 2006 05:56AM Chiahead wrote:

I had sentinal node biopsy done with lumpectomy. The dye showed 3 nodes and the surgeon took 4 nodes. They were all neg! I had more trouble with the lymph node site post-op than I did with the lumpectomy site.

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May 4, 2006 06:26AM calm247 wrote:

i had a lumpectomy and SNL - the 3 they removed all came back negative. yea! owever, the margins did not come back clean so i am scheduled for a mastectomy.

it has been 3 weeks since the lumpectomy and my range of motion is pretty good. most of the tenderness and sharp tingling is in my breast. i'm still timid about lifting things. but that may just be me being extra cautious.

good luck to you!
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May 4, 2006 06:41AM stacey2930 wrote:

I only had one sentinal node removed 7 months ago. I occasionally have slight swelling under my arm, but nothing real noticable.

Yesterday is history tomorrow's a mystery and today is a gift that is why it's called the present Dx 10/20/2005, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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May 4, 2006 07:37AM zandwich wrote:

I agree with what Barb said...radiation can also affect the lymph nodes and should increase the need for caution! I had only 3 nodes removed, but had radiation to the axilla in addition to the breast. A year later I got cellulitis in my forearm (who knows how or why, but there could have been lymph fluid there already) and now I have LE issues.

Know and follow the precautions!

Good luck with your mastectomy.

Zan
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May 4, 2006 09:02AM Binney4 wrote:

Hi, moogie,

Very smart to educate yourself. I've had two mastectomies, one prophylactic. First with one lymph node taken and radiation to chest wall (not to axilla) due to margins too close to the chest wall. Second one was prophylactic, but there were 4 lymph nodes in the mix (not uncommon with prophylactic, as they can't avoid all lymph nodes -- do check your path report for that information afterward). I have lymphedema (LE) in both arms, both hands, and both sides of my chest. I was reasonably careful about the precautions, but found I only had to goof up once. Bummer!

There are recent studies, BTW, that are showing more women are developing breast LE following lumpectomy and radiation, since that has become a standard protocol to replace mastectomy in so many cases. This is in spite of the SNB procedure taking minimal lymph nodes.

There are so many stories out there about what to do and what to avoid that it's a good idea to have a list of measures you can take to reduce your chances of developing LE. Here's the web address of the National Lymphedema Network, where you can find and copy off their Prevention Guidelines:
www.lymphnet.org

Be well, moogie, and may you never swell!
Binney
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May 4, 2006 09:07AM Sandra1957 wrote:

Binney,

What was your "goof"?
I'm always steppin' in and out of crap!
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May 4, 2006 09:48AM Binney4 wrote:

Ah, true confessions!

First time (right side) I was crocheting very tightly (stuffed animals) and the kids I wanted to give them to were coming the next day, so I worked most of the day on them even though my hand was aching from it -- like, who cares about a little ache, right? Wrong! Then my hand really blew up when I flew to Alaska with only a compression sleeve and no glove (my first LE therapist didn't have enough training to know this was a bad idea--now she does, and I've switched to a better-trained therapist).

The second time (left side) I had a low blood pressure emergency and had a blood pressure cuff put on that side, lightly and briefly (at that point I was not about to make a fuss about using my leg instead). Wish I'd made a fuss.

There's currently a thread here about a sister who had acrylic nails done, had a bit of damage to one nail, and has experienced swelling following that. Other women have: helped move furniture; moved to a new home and hefted boxes; got a paper cut that led to infection and lymphedema; etc.

The guidelines really do help! Well worth the bit of extra effort.
Binney
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May 4, 2006 11:17AM kats wrote:

I had a lumpectomy, SNB (only one node removed), chemo & radiation.
I developed lymphedema 17 months post lumpectomy. Most of my lymphedema was in my breast with only slight swelling of the arm.

kats
Mary "What lies behind us and what lies before us are small matters compared to what lies within us." Ralph Waldo Emerson Dx 5/7/2003, ILC, 1cm, Stage I, 0/1 nodes, ER+/PR+, HER2-
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May 4, 2006 11:24AM Sandra1957 wrote:

You guys are freaking me out! I had a bilateral in February. SNB on left side. They've been checking my BP on my right side at my re-checks. What should and should I not be doing?

I'm always steppin' in and out of crap!
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May 4, 2006 01:47PM amygil81 wrote:

Moogie, I had 3 nodes out in an SNB during a left mastectomy five years ago. A year after that, I found a lump in my mastectomy scar under my arm and had to have it biopsied. It was benign, thank God, but removing it also took out three more nodes. A few months after that, my arm and hand started to swell and I was diagnosed with mild to moderate lymphedema. I have to wear a sleeve and glove all day, and bandage my arm at night. I walk with crutches due to a disability, which my doctor is sure aggravated my lymphedema situation, so my experience may well not apply to you. Still, I'll join the other ladies in saying that lymphedema is NOT something that you want, so I suggest that you be extra careful with your arm that's losing the nodes. I wish you the best with your treatment.

-- Amy
Osteosarcoma in left leg at age 13. DCIS in left breast at 33. IDC recurrence in left chest wall at 42. Dx 12/2000, DCIS, Left, 1cm, Stage 0, 0/3 nodes, ER-/PR- Surgery 12/9/2000 Lymph node removal: Sentinel; Mastectomy: Left Dx 12/2009, IDC, Left, 1cm, Stage IIIB, 3/10 nodes Surgery 12/17/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 1/10/2010 CMF Chemotherapy 5/30/2010 Taxol (paclitaxel) Radiation Therapy 10/31/2010 External: Lymph nodes, Chest wall
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May 4, 2006 02:28PM ocean wrote:

I had 7 nodes removed,all negative. I had a mastectomy and have no LE!!! No chemo or rads.

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May 4, 2006 03:24PM Binney4 wrote:

Lini, don't freak -- there are sensible precautions to take that can help with prevention. Trouble is, we rarely hear about them from our healthcare providers and many of us have even had doctors and/or nurses (not to mention lab techs) scoff at us for taking preventive steps.

You'll find that the National Lymphedema Network recommendations are to avoid all blood tests, IVs, injections, and blood pressure on an at-risk arm, which if you've had bilateral surgeries means both arms. My onc's office knows this and is scrupulous about avoiding it, my surgeon thought I was nuts to avoid it, and my PCP didn't have a clue one way or the other. Each of us has to decide what tack we'll take with this, but as you can see, those of us who have developed it are way over on the conservative side. Too late smart!

All that's easier said than done. Here's how this actually works:
1.) Blood pressure on leg -- rare is the nurse who has any clue how to do this! You have to be lying prone for at least 5 minutes before they check it or you will get a reading that is higher than it should be; they can put the cuff on your calf with the stethoscope on the pulse point near the inside ankle bone and take bp there in the usual manner. They don't want to take the time to do this (5 minutes on most doctor's schedules is practically an entire patient visit!) If you insist, they can be irritated or sneering. They may tell you you're flat-out wrong. Remind yourself that many (most?) med schools in this country spend less than one day on the entire lymph system and nursing programs may not cover it at all, so they don't know about this. And anyway, they're probably overworked and don't want to deal with it. This is YOUR arm, so you're the only advocate.

2.) Blood tests -- lab order sheets need to have "Draw from foot only" written right on them by the ordering doctor. Then you'll have to call around and see where there's a lab with someone trained to do it. If you can't find one then maybe your onc's office nurses would be good enough to do the draw for you.

3.) IVs -- When you're going in for a test or procedure where an IV is required, it needs to be written on the doctor's order that it has to be done in your foot. You also need to call ahead of time and make sure they'll have a staff member there who can do it at your appointment time; if you don't, you'll have to wait around while they call somebody in.

4.) Anesthesia -- You can have all this stuff written in the orders, you can alert everyone in sight beforehand that they can't use your arms while you're unconscious, and you might still wake up to find either an IV or a blood pressure cuff on the arm. Women here have made assorted suggestions to prevent this. You can write all over your arms with a permanent marker (comes off later with alcohol) "No bp here" and "No IV this arm". One woman's surgeon wrote it for her AND SIGNED HER ARM! Great solution! Others have had nurses outfit them with stockinette sleeves with those messages written on it. Whatever. It's tricky. If you're staying in the hospital, techs will try to use whichever arm is easiest to reach and may ignore signs on the door or above your bed, so it helps to have someone with you to waylay errant techs and nurses.

There are plenty of women who either don't know they are at risk, or they don't have the energy and oomph to stick up for themselves about this, which is why so many of us here are on personal campaigns to educate as many healthcare providers as possible. It helps to arm yourself with a copy of the NLN prevention guidelines when you go in for a doctor's visit and gently explain the reasons why you won't be letting them do bps or blood tests on your arms.

Then again, as Ocean suggests, LE is certainly not inevitable, even for some women who take no precautions whatever. We really don't know who is at greatest risk, because we don't have research to tell us what all the risk factors are. All we have is those NLN prevention guidelines and the free will to choose how we deal with that knowledge. We're all so gloriously different!

Bottom line, if swelling develops there is treatment available. It can reduce the swelling, help you keep it under control, and help prevent infection and permanent skin and tissue damage. As with every step of this bc journey, knowledge is power.

Sorry to be so long-winded!
Binney
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May 4, 2006 04:34PM Sandra1957 wrote:

Wow! Thanks for all of the info. I just had blood drawn from my right arm a couple of weeks ago. Almost had BP taken on the left but caught it right when the cuff started expanding and screamed and yanked it off, but then had it taken on the right side. So leg is is what it should've been. I need a TB test for work, wonder if these can be done on the leg also?? I will definitely write on my arms when i go in for reconstruction. My arms are huge enough from fat, I don't need allof the other pain and aggravation that comes with LE. No one ever told my mom this after her lumpectomy and node biopsy and she does have some LE on her left side. She will be flying this summer to Alaska and asked her dr. about a sleeve. Dr. pooh-pooh'd it. What do you think?

I'm always steppin' in and out of crap!
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May 5, 2006 05:57AM Lynne wrote:

I had a lumpectomy and SNB. They only removed one node and it was negative. I am now having therapy on my arm. It is 2 inches bigger on the upper arm and an inch bigger on the foream, than my other arm. She's trying not to have to wrap it. She thinks by massaging it twice a week and me doing 1-2 times a day, it'll get better. I just started this week, almost a year after my surgery! Hopefully, it gets better soon!

Lynne
Mets in spine, lungs, and liver. Carpe Diem-Live for Today Dx 5/26/2005, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 6/5/2005 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 6/5/2005 Lymph node removal: Sentinel Radiation Therapy 6/29/2005 Whole-breast: Breast Surgery 12/13/2005 Prophylactic ovary removal Hormonal Therapy 12/19/2005 Arimidex (anastrozole) Hormonal Therapy 12/17/2006 Femara (letrozole) Hormonal Therapy 3/19/2007 Aromasin (exemestane) Hormonal Therapy 12/18/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 5, 2006 08:10AM ravdeb wrote:

I had one node removed with SNB and it was negative. I am in rads now and doing whole breast rad with supposedly nothing on my nodes under the arm. So far no problems but I worry a lot about it and have asked my kids to carry baskets of laundry up and down the stairs for me, but sometimes I do it myself.

I'm flying overseas this summer. Should I be asking my onc for a sleeve??? What do you think?

I've read the precautions on lymphnet.org but wondered if it applied to me. My onc knows I'm going overseas...she's known this for months and she never suggested a sleeve... I doubt she will suggest I wear one... but I could ask her though she's not around much now...on maternity leave...

What do you think?
ravdeb
IDC, 2cm, triple negative, grade 3, node neg Dx 9/5/2005, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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May 5, 2006 09:05AM Binney4 wrote:

Hi, all,

Lini, your mom should be fitted for both a sleeve and a glove before flying. (It sounds from your description as though she hasn't seen a therapist -- if not, that would be a real priority, and she may have to insist on it with one of her doctors. Better late than never. Just make sure the therapist is fully qualified: at least 135 hours of specifically-LE training beyond the PT or OT training and at least a year of field experience.) She should make sure the fitter has lots of experience with lymphedema, or better yet should see a LE therapist for fitting and recommendations on both size and level of compression in the garments she orders. There are off-the-shelf and custom-made garments and the choice of one or the other has to do with arm measurements, not whether or not LE is present. Some arms work with the ready-mades, others simply don't. Only someone very experienced in this can make those calls (I had a fitter at a prothesis place offer me a sleeve in a higher compression than I needed just because she had one there and would have to order the other -- duh!) Insurance varies widely in what they'll pay for garments, and it may be the Customer Service folks won't get it straight the first time -- I find calling back and talking to two or three of them sometimes helps, and in other cases I make a fuss and insist on a case manager. Depends on how your finances are and how much stomach you've got for arguing with your insurance.

Ravdeb, yes, you should have both a sleeve and a glove. Many therapists actually recommend a glove with fingers that come up to the nail bed rather than the stubs on some LE gloves (gauntlets). If you don't have a glove, then any swelling that may occur will be forced into your hand instead of upward toward your axilla and trunk.

You'll want to get the glove and sleeve with enough lead time to try it out once or twice before the trip -- they can take some getting used to. Ask your fitter/therapist to demonstrate how to put it on and take it off, and how to launder and care for it. Use an approved moiturizing lotion (such as Eucerin) generously every time you put it on. When you wear it, your fingers should not turn blue or numb. Most of us have experienced some initial irritation in the webs between our fingers and at the bend in our elbows. A dusting of cornstarch before donning them can help with this. I put cornstarch in the toe of a cotton sock, close the top with a rubber band, and pat the cornstarch on through the sock to avoid slippery spills and direct it right where I want it.

Okay, the day of travel you don your garments before going to the airport to help protect you as you're handling luggage (which you want to push or pull on wheels rather than heft, and avoid jerking out of overhead compartments or off carousels). You exercise your arms and hands frequently throughout the flight (in spite of the stares from fellow passengers--you can either smile sweetly or ignore them). You make sure to drink plenty of caffeine-free fluids (preferably water) all the time you're travelling. And after you arrive at your destination you leave the garments on for an hour or so to give your body time to adjust to all the pressure changes. If you'll be engaging in any unusual activities on the trip, use your glove and sleeve preventively for those as well.

lynnec, wrapping is the standard of care for initial LE therapy, especially with as much swelling as you are having. If the massage alone doesn't work quickly, you'll want to move to wrapping for sure. It's an important skill for you to learn so that during periods when the LE is "acting up" you can regain control on your own. The more we can do for ourselves the quicker we can take charge of our lives again. Just MHO.

I am no good whatsoever at quick answers -- sorry!
Binney
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May 5, 2006 11:04AM jinky wrote:

Hi Everyone, In 2002 i had a mastectomy with 11 nodes taken.....Only 1 had micro cancer cells.....4 chemo.....2005 preventative mastecomy.....2004 lifted small tv and my arm swelled but went it down right away with sleeve.... stayed good until 2005 until i started knitting alot and my hand swelled..... did 5 weeks wrapping from fingernail to top of shoulder.....wear sleeve when i drive or do housework.....glove all day and nothing at night. So far doing good but learnt everything here....(being very careful about hangnails and keep fucidin and bandages(antibiotic cream in purse).hugs jinky

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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May 5, 2006 01:10PM LauraGTO wrote:

ravdeb -
I wore a sleeve for the flight to and from my recent trip to MX. as a precaution. My flight was only 3 hours - I really think you should talk to your Dr. about this. My PT strongly advised me to wear one and all I had was a "cording" problem. Better safe than sorry!
Laura
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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May 5, 2006 11:44PM ravdeb wrote:

Thanks everybody! Binney...I'm copying your message and printing it up. That was really helpful!

Laura... thanks for the tip. I'm seeing my rad doctor this week so I'll talk to him about it and get started on this. I've got this long flight ahead of me and many small flights after I arrive in the States so I really want to do whatever I can to prevent problems.

Thank you all so much!
ravdeb
IDC, 2cm, triple negative, grade 3, node neg Dx 9/5/2005, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Jun 1, 2006 08:38AM sherry7 wrote:

Binney, remember me? I didn't have any nodes taken to my knowledge. I did develop LE six months out, I cleaned my house and there it was, dang.....Anyway, I am thinking that perhaps surgeons got some of my nodes by accident when doing simple mast? Is that a probability? Love your input on this one. Thanks 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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Jun 1, 2006 12:36PM daydream wrote:

Wow! I am amazed at how many of you developed lymphadema months and even years after a SNB. I've been really careful about not using my R arm for IV's, etc., and I thought maybe the medical people were being overly cautious. Well, I guess they weren't!

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Jun 1, 2006 03:44PM Binney4 wrote:

Hi, Sherry, of course I remember you! Don't know about probable -- NPat would have a better perspective on that. But it's for sure possible. No doubt there was a path report done, yes? Do you have a copy? If might say there, since it's their job to note everything they encounter. Still, aside from nodes, surgery destroys lymph vessels and also sets up barriers for lymph flow in the form of scar tissue. Any of those possibilities could lead to the development of LE. Bummer!

Daydream, hello and welcome to the LE board. You're so fortunate to have an on-the-ball medical team. Kudos to them! The National Lymphedema Network has a list of Prevention Guidelines you can copy off at www.lymphnet.org . They're handy to keep around and review from time to time. Stay well!

Binney
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Jun 2, 2006 08:13PM sherry7 wrote:

Binney, when ya gonna catch me? haha, anyway, my path didn't say nodes were taken or disturbed but like you say there are pathways and scar tissue is always a barrier. I think it may just be that. Theres a lot of plumbing to deal with in our bodies. Now, I have to accept it and learn the best tricks to get along with it. Thanks, Sherry
Love and light
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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Jun 2, 2006 08:45PM mindyk wrote:

I had 12 nodes removed with only 1 positive. Just went to therapy today for lymphedema. My arm is wrapped from my nail bed to my shoulder in 4 different layers of compression wrapping. Fingers are wrapped also. How long does it usually take to see an improvement? Any info will be appreciated!
Mindy
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Jun 3, 2006 09:23AM Binney4 wrote:

Hi, Mindy, and welcome!
Sorry you had to join the ranks of us "wrapped wonders!" Kinda warm, yes? But it's not forever, so keep your courage up! I think the time it takes to see improvement varies from person to person, but for me it only took a few days. At that point it began to feel better, and after a few days more we could see reduction without having to measure to know it. But getting as much swelling out as possible can take anywhere from a couple of weeks to 5 or 6. At that point you can be fitted for compression garments that will help you keep it in control.

Do be sure to ask tons of questions, whatever occurs to you. It helps to take someone along to therapy if you can, to jot notes and help you remember the steps of the massage and wrapping. There's a learning curve, and it's steep (some of us have been known to scream, dissolve in tears or heave bandages across the room -- hmmmm! who, I wonder?!) but once you own the skills you get to take back control of your life. Ahhhhhhhhhhh!

Hang in there, Mindy -- it'll be good!
Binney
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Jun 7, 2006 03:09AM mindyk wrote:

Just an update. I went back to therapy on Monday. I got a massage to help with the cording that I have. She didn't rewrap my arm so right now I don't feel like the mummy that I did last time. LOL! I also got exercises to do. I had chemo #4 yesterday so hopefully I will feel like doing my exercises, even if I cannot do them all, I hope do at least a little. I go back today so we will see what happens.

Take Care,:)

Mindy

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