Nodes removed How Many?Have you developed Lymphedema

coraleliz

At the time of my BMX, I had 4 on my left side & 5 on my right side. Two of my left nodes had 2mm-3mm mets. My MO wanted me to have my 1st & 2nd levels out but my surgeon disagreed. She said radiation to this  area would take care of any small mets & would leave me with less of a risk for LE. She said the further risk of surgery would leave me with a 30% lifetime risk. The RO agreed. I will have radiation but not until after chemo(although I'm still weighing the risk to chemo)

lago

yizbieta I would ask to be refered to an LE PT. My cording wasn't too bad but it didn't go away till I saw an LE PT. Prior to that I was doing PT but not with an LE PT. My cording on one side is very minor/reduced and gone on the other side.

edwards750

I had one removed - the SN. The BS said since the micromet in my SN was so small they did not think, based on their research, that there was cancer in the other nodes so they only removed the SN. My ONC said that was a good thing because I did not want lymphedema. I assumed by that statement that node removal can cause lymphedema. diane

kira66715

bump

njbhwgirl

I had 27 nodes removed and sentinel was cancerous. I developed LE 9 months after bilateral. Beleive it or not it happened the day after I went the gym.

This was my first time back to the gym in over a year. I know that excercise is suppossed to be good for you but wth...it seems a bit unusual to me that the day right after I went to the gym I develop LE. It is minimal but I notice the sweling and the heaviness and pain. I also think I have truncal LE.. My therapist says know but I know what I feel.

I read on these boards so much that excercise is so helpful.. Should I go back to gym and just not do anything with the arms?

kira66715

The key to exercise is slow and steady and wear compression garments--it's not unusual to develop LE after going to the gym--some women develop it with exercises from PT

Here's the NLN position paper on exercise: it's good for you, definitely work your core, and be very careful with extremities, and wear compression

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Here's a link to truncal LE--you know your body

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Kira

NatureGrrl

clyn, I don't think there's that much conflicting information on whether or not it's OK to exercise your arm.   Check with an LE therapist to get the best medical advice for you, but overall, they've found that exercise (start mild and slow and build gradually) actually helps prevent LE.

njbh, when you start up exercise you have to start slowly, gradually, not many reps, and then build only slowly.  Maybe you overdid on your first day back? (I always want to do more than I know I should!).  And there are some exercises to be avoided (my LE therapist told me to stay away from the "butterfly" machines, if you know the ones I mean).  But that's me -- your own therapist can guide you.

Node removal may mean you get LE -- or you may not. Radation to the underarm (nodes remaining) seems to be more of an issue than # of nodes removed.

I had chemo, lumpectomy with 17 nodes removed, mammo radiation (not underarm), and was told my risk was very low for developing LE.  Nonetheless, I follow the basic precautions.  I saw an LE therapist and she was very encouraging for me to exercise, use weights, a lot of exercise machines, etc., but did caution me about a few things to avoid for sure -- certain machines, hot tubs, & saunas (for more than a few minutes). 

Again -- everyone with questions -- see an LE therapist.  They'll help you with what's right for your particular situation.  Any advice we give you here can help educate you but it won't necessarily tell you what's right for you.  Best of luck, everyone!

ruthbru

I find that when I don't tone for a couple days, that's when my arm starts to feel heavy and achy.

cp418

Lumpectomy 2006 had 18 nodes removed back then, 1 positive SN.  I had issues with cording but did lots of stretching exercises and went back to my normal physical activity level ASAP.  So far, no issues..........

hymil

ruthbru wrote: I find that when I don't tone for a couple days, that's when my arm starts to feel heavy and achy.

Couldn't agree more Ruth. I get exactly the same. I think it's the deep breathing / getting out of breath. I seem to be turing into an endorphin junkie, but hopefully not a running bore! Having given up on ever having a wonderful cleavage, (I think I peaked at 41 weeks preg, and that was 20 years ago) I am now working on a superb rear-view (and those "nice ankles" )

Saying that, I have only just started doing anything at all with my arms at the gym, and that's a year out from surgery. It took me more than 8 months working on shoulder mobilising after I had cording and chestwall contraction so my thighs do have a headstart...  currently exploring the armbike very very cautiously.

Thanks for this thread cos I have a swim date next week and I know my friend will want to do laps as excess weight is her issue. She has a lovely statuesque figure but somehow a lot of lard landed on top of it. So we both hate swimsuits  LOL.

EileenKaye1

I had 33 lymph nodes removed.  Barely any lympheodema.

Two should not be a problem.

Good Luck, Eileen

ruthbru

Here's something els that happened to me that I find fascinating: my left arm is my 'bad' one, and I have followed all the advice about carrying my purse, luggage, anything heavy etc. on the other arm....I recently had a hernia repaired on my right side (the 'good arm' side....a coincidence or did I over-strain that side of my body? )....during recovery from the hernia surgery I've been forced to use my 'bad arm' more for everyday lifting, carrying etc. The other day it dawned on me that my left side feels the best and most 'normal' that it has ever felt since my BC surgery over 4 years ago. I'm thinking maybe I was babying 'the bad arm' too much all this time.

Claire_in_Seattle

Hymil.....to say nothing of being able to indulge in CHEESE!!!  (Other thread.)

I am just fine.  Was sent home with exercises and told to do the day after surgery.  Fortunately, I had full range of motion so made sure things stayed that way.  I didn't go back to lifting until after the drain came out, which was about 5 weeks because I was out there doing cardio from Day 4.

I cycled 10 days post surgery and have been cycling ever since, other than ski season.

I am buff on both ends, but could lose a bit of weight.  Hoping that all the summer cycling events help with that one.

As it doesn't work for me to have days of upper body exercise/days of rest, I do a routine of weights and crunches every week day.

My female oncologist took a good look at me last time and said that she needs to do the same!!!

I get cranky, sluggish, and don't feel myself unless I get a lot of exercise.

Plus, who wants to give up eating??? - Claire

p.s.  I have a Dolce & Gabbana leather mini skirt which looks just fab on me.

jakhope

I had my lumpectomy and 8 nodes removed in Jan 10. I just had my 18 month mammo and check with surgeon. I continually have pain in the area of my surgery, swelling and pain where the nodes were removed. He said I have Lymphadenitis and I may have it always.He said if it gets worse to come back and maybe go on antibiotics.I have no swelling in the arm but feel it at night and can't wait to get my bra off by about 3:00 PM. I have joined the gym and have started water aerobics, that I love, and am using the elliptical some. The Dr said ok to most workout. Anybody heard of this condition and have any suggestions. I hate taking Tylenol, Aleve, or any thing all the time.    Thanks

Binney4

Jakhope, I'm not sure I get this. If it's Lympadenitis it needs treatment right now. That's an infection that can spread rapidly. Did he do any cultures on it to find out? Blood work? Are there obviously swollen, tender, or hard nodes in the area? If he's just guessing then there are other things to consider. Like truncal lymphedema:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Plenty of otherwise very good doctors don't know anything about truncal lymphedema, so this is a subject you may have to bring up for investigation yourself.

Until you know for sure what you're dealing with, the water aerobics could be dangerous for an active infection, and stressing your arm and upper quadrant with other exercise would make any lymphedema harder to treat and control.

If in fact what you're dealing with is truncal lymphedema, then you need to get into therapy as soon as possible in order to get it and keep it under control. Therapy will deal with both the swelling and the pain, and it will teach you how to keep it in good shape going forward. Here's how to find well-qualified lymphedema therapists near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Until you know whether or not you're dealing with an infection (lymphadenitis) the therapist can't begin treatment, so your immediate need is for a definitive diagnosis, and quickly.

Please do get some help with this, and let us know what you discover.

Gentle hugs,
Binney

Suzybelle

I have never even heard of lymphadenitis.  Now I have something else to worry about.  Is that different from cellulitis????????

I can feel myself getting it, whatever it is.  I think I just have 'itis'.

You know, before bc and le I just worried about big dogs, snakes and running out of coffee.  Those were the days.

ktym

Suzybelle,

You know I'm babying my stitches right now, not nice to make me laugh so hard.  Funny you mention that,  DH and I were out walking yesterday and I stepped over a snake on the sidewalk.  Didn't even blink, he looked at me in surprise.  Never really worried that much about snakes before, but, now, they are so not the worse thing in my life.   Running out of coffee, yeah, that would rank very high still....

coraleliz

My BS who is experienced in lypmh node surgery, she only does breast & melanoma, told me that studies have not proven "early aggressive" exercise benefits outcome, range of motion, etc.......Following my BMX, I had a drains for 6 days. During that time I only walked. Pushing buttons on the microwave & unsrewing the caps of Rx bottles was challenging. After the drains came out, I started running & going to the gym where I isolated different muscles without causing discomfort. I worked up to being able to hang on a chin-up bar. I was afraid to try biking because of the road vibration & having to hold onto the handlebars with my arms outstretched. I fear lymphedema & keep checking my arms....over 2 months,none yet. My right arm healed faster than my left. Not sure why, thought I might be "babying" my left.

   I believe my BS told me that young, healthy, active people have more lymph nodes & this number goes down as we age. I don't go back to her until my 6 mont check, or I'd ask her again. Perhaps this explains the variation in number of nodes removed more than anything else. SN biobsy only makes sense(to me anyway) if the nodes identified by the dye are removed.

KS1

Jakhope,  The term "lymphadenitis" usually refers to an infection in the lymph nodes.  It can be quite serious and. if bacterial, usually warrants antibiotics.  Could  your doctor have said "lymphadenopathy"? KS1

jakhope

Thank you for your response. your description of the truncal lymphedema sounds exactly what I have. I should have written down the exact word my Dr said. I called back the office and who ever gave me the name, may have been wrong. I had so many questions and at a 18th month follow-up, I wasn't expecting to take notes as I did in the beginning. I have a follow up with my Oncologist next week and I will address this and see about a therapist. I did find a name of a local one through your info. Thank you so much. Sometimes I think we find out and get more advice through each other in all this, than we do from the DR's.

jakhope

I called the one place that does the therapy and is certified and I need a referral and Fed Blue cross and Blue shield is not an insurance that is accepted. Medicare is, but I am not there yet.I wonder if other physical therapy facilities know what to do? I will see Oncologist next week.Just home, bra off, breast indented some what red and swollen larger than it was before lumpectomy, which my surgeon said he took out an "ample" amount. I want to know where....   

BeckySharp

Jakhope--I have Fed Blue Cross/Blue Shield and the center I am going to accepts it.  I was told I can have 75 therapy visits per year.  I do have to pay the copay for each visit.  Maybe you can find another place that takes it.  I have a lot of friends federally retired in FL and they do not seem to have insurance problems.   BC/BS is usually accepted most places I thought.  Maybe I lived overseas too many years and do not know.  Becky

jakhope

Becky, Thank you.I was shocked to hear they did not take my Fed Blue Cross/Blue Shield.I will find out more next week from my Oncologist. I have no problem paying any co-pay. They said without the insurance I would have to pay $145.00 first visit and $140.00 eash other visit. I have a problem with that. 

perfect4

I had 5/27 removed and after radiation my LE got a lot  worse. I went to a certified LE thearpist once and was almost in tears as she was wrapping my arm...I was certain I would have to hang my arm out of the car window to drive home! I took off the wrapping later that day...I know. Bad idea. I go in for my exchange surgery in 2 weeks so my "logic" was I'll wait until after the exchange surgery to start up the LE treatment again. Has anyone had any LE worse after the exchange or as my "logic" goes  were magically fixed? I feel like a failure not following thru....but I didn't feel like I could fully follow the wrapping at this point..:(

Binney4

Aw, Perfect, I'm so sorry!

I hear you on your "logic," and I get it. We do what we can. Please don't beat yourself up!

You're sure right about the wrapped arm being a bizarre thing, and making room for it in your life (much less in your car!) is no easy matter! We're here for you -- let us know how we can help.

Sadly enough, the "magically fixed" part isn't real likely. More like: the better control you can get BEFORE the surgery, the easier it will be to heal and the less risk of serious infection afterward. So do think it over, but do whatever you can manage. If you don't have a therapist you trust and can talk to, PM me and let's "talk."

Big, gentle hugs,
Binney

BeckySharp

Oh Perfect--I know how you feel!  On my first visit to an LE therapist I was wrapped and did not know anything about it.  I immediately had to leave and go teach a class to college students.  I could not even work the smart board as I am so right handed and my right hand was wrapped!  I was in shock.  Thank goodness for helpful students.  In bed that night I wasn't sure I could handle it.  I talked to someone the next day who had gone through wrapping and she helped me a lot. After a few days it became a norm and I am now so used to it.  I almost feel better after my therapist wraps me. Maybe it is because I just had MLD.  Hang in there.  You've been through a lot.  Take care.  Becky

kathleen1966

I had 15 nodes removed after having four positive nodes and have mild lymphedema. But the PT treat me like I have big time lymphedema.  I have been fitted for custom garments, night garments and now they are ordering me a machine that will massage my arm once a day (this is a 5,000 dollar machine!). They also wanted to fit me for a garment for my torso.  I think they may just like me over there and they want me to come in as much as possible....anyway, anyone has a risk of lymphedema if even one node is removed but the risk may be higher if more nodes are removed and if you get radiation. Good luck, may you have clear nodes and no lymphedema!  Because it is a royal pain in the ass....

jakhope

I went to my Oncologist today and he said I have breast lymphedema.I swear I heard itis with the surgeon.Anyway, he gave me a RX for physical therapy and my insurance will cover it at the hospital facility where I had all my treatment. He said sometimes it helps, and sometimes it doesn't. I hope it does. I don't go to get evaluated until July 7th. 

Binney4

Jakhope, you have time to call ahead and ask some important questions before you go. There's a list of questions to ask on this page:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

If the surgeon is saying "sometimes it helps and sometimes it doesn't", then it's possible the therapists at your hospital have not been thoroughly trained (by law, unfortunately, they don't have to be). Check it out and maybe spare yourself some grief. Be well!
Binney

kira66715

Jakhope, In my experience, breast lymphedema does tend to respond to trreatment: it just may take time.

Here's a link on it

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Did we ever post the bc.org ask an expert about it?

http://www.breastcancer.org/tips/lymphedema/ask_expert/2008_04/question_07.jsp

Amy: Does lymphedema only occur in the arm or can it be in the breast as well?

Answers -Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : Absolutely! Not only can it be in the breast as well, it can be exclusively in the breast and chest wall, even if it does not appear in the arm. So we need to recognize that breast edema and chest wall edema exist and should be treated.

Jennifer Sabol, M.D., F.A.C.S.: As a surgeon, I probably see it more acutely than most and have a more difficult time getting other physicians to acknowledge that there is such an entity as lymphedema of the breast which is actually quite uncomfortable for some patients as well as alarming, because it is difficult to ask for treatment for swollen breasts. I think maybe you can comment on how you manage patients like this.

Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would say, first of all, recognition is part of the key. I believe anecdotally that I am seeing more frequency of breast and chest wall swelling - lymphedema, if you will - now with the sentinel node biopsy, as we are removing the direct drainage pathway out of the breast. Unfortunately, it is going far underrecognized. Treatment for breast and chest wall lymphedema is analogous to the way we would treat the arm, meaning that the patients would require lymphatic drainage, compression, therapy, exercise, and skin care. Many of these patients will require custom fit or near-custom compression bras.

Kathryn Schmitz, Ph.D., M.P.H., F.A.C.S.M.: I would say this is an international problem. I was at the Australasian Lymphology Association meeting in Perth in March, and this issue of seeing more breast edema was a theme there. It seems to me that the compression garments and treatments available are not as advanced as they are for arm edema, the compression garments in particular

.
Nicole Gergich, M.P.T., C.L.T.-L.A.N.A. : I would agree with that to an extent. I think there are excellent compression bras that exist. I agree with you that we are as not highly evolved in this area in recognition, treatment, and management as we are with the arms.

Jennifer Sabol, M.D., F.A.C.S.: I would add one note of hope, and it is sort of anecdotal. I think this is one of the few times that lymphedema does have a tendency to regress. It's probably due to the acute injury of the radiation therapy. Breast edema does tend to go down over time, though it may not disappear. It is a very slow resolution of the edema and it's almost never complete. I generally tell patients to expect a very slow, ongoing improvement, even over 2 to 3 years after their radiation therapy, until they reach a stable plateau. I'd be curious if you two have found the same sort of better overall prognosis for the breast edema.

Kira