Cording/Lymphedema One Year Later??
Comments
-
Jpmomof3, you made me laugh so hard with the 'shit icing on a vomit cake' - that's too funny! So descriptive of our situation, though, isn't it?
I had full range of motion in my arm and shoulder about three to four weeks after surgery with 4 lymphnodes removed through the same incision as the mastectomy. This started to change during the last week or so of radiation, and now, 10 weeks later, my shoulder muscles are really stiff - I was never told or given stretching exercises by my onc during rads to prevent this. Or maybe I would have gotten it anyway? Maybe there is some cording in the axilla that I can't see. There is obvious contraction around the TE after rads. Who knows what damage was done where? This is just so damn confusing and frustrating.
Did some stretches for my shoulder in the gym this morning with the trainer, and I have to say it feels 'looser' for now. Will have to do that every day according to her. It seems the moment you stop, the stiffness will come back. Oh man.
-
These doctors dont tell us a lot of what is going to happen. If you get radiation for the axilla and the supraclavicular nodes the radiation goes all the way through the muscles and they get damamged and tighten up. They should warn us about this stuff. Potentially stretching throughout radiation may have saved you at least some of that trouble.
I used my arm pretty hard today and there was no change. I kinda feel like really stressing it out and seeing what will happen. I know i shouldnt but I hate thinking that I cant or shouldnt do something because that MIGHT make the LE worse. I hate living in fear. If i knew exactly what would trigger or worsen it I could deal with it. but is hauling in a car load from costco going to do it. is carrying my three year old back from the playground going to do it? I eant to haul out the crap from my basement that I cleaned up recently but my husband doesnt want me too. I hate being limited...
-
pmomof3 ~
I also get irked hearing "well just don't ..." from people and especially DOCTORS! I can never find the balance between controlled stretching of the cord and trying to live my active life. It seems that I forget about the cording -- then do something that extends my arm up or at a certain angle -- and then there is hell to pay for days of throbbing in my axilla. All my dozens of baby cords were resolved with PT, but the big, fat MOTHER cord that is refractory to 50+ sessions, etc, is permanent and wicked.
I actually had a plastic surgeon tell me to just keep my arm down or wear sleeves so you don't see it!!! Hello doctor, did you not listen to me???? This patient is trying to tell you about how it FEELS with the pain and the effect it has on QOL. Has nothing to do with LOOKS.
My AWS/Cording also progressed to truncal/chest wall and arm LE . . .
-
Doctors can be real dumbasses sometimes. I should know, I am one! LOL
-
I wonder if most of them are covering their asses. When I last saw my MO 4 months ago, I was hitting rock bottom emotionally and he acted as if nothing was wrong. He didn't even have a referral for me and I had to work things out by myself. When I saw him the other day he said, "Your name was right there next to my phone and I was thinking about you and hoping you were doing well." WTF!!! If he was thinking of me, then why didn't he call to check or at the very least have one of his nurses call to make sure I was okay????
jpmomof3, what do you practice?
-
I am emergency medicine trained but work in an urgent care now. (I hate night shifts!)
And yes they are covering their asses. They all do. That is a constant in medicine and drives a lot of doctors to do things that might not otherwise be done. But that is a giant discussion on the state of modern medicine in this country! -
I've got a neat six by six inch tanned (complete with freckles!) square on my left shoulderblade after rads. So yes, those beams go right through. No wonder my whole left shoulder area feels so stiff and tight. But was I told and warned about this before the time so that I could do precautionary stretches? NO! It makes me angry. To the rad onc it is nothing, to me it is huge. It is a considerable loss of mobility, and feeling even more impaired than I have to. These oncology drs do a great job, but they so often forget that the patients in front of them are lay people, scared lay people. Patients are so dependent on them for guidance and knowledge, and if that is not forthcoming, patients fall through the cracks, and end up with less than satisfactory results.
-
Liefie, you are so right and all it would have taken was a referral from the start to a therapist who can spend an hour with you and educate you on lymphedema risks and muscular issues that come from surgery and radiation. Learning a few stretches may have helped prevent a lot of problems with mobility. It should just be part of the treatment right from the beginning just like creams for the skin issues. it is frustrating how little attention is spent on these things that are big factors for quality of life.
My DH is wonderful but if I hear, well just be glad that we have these treatments and you are still alive one more time... These things are important! -
Jpmomof3, I just wrote on the 2012 sisters thread that maybe one criteria for becoming an onc should be that you are a cancer survivor - LOL. But yes, they of all people should be able to put themselves in the patient's shoes. We have a life-threatening disease and we need their full attention, not the cavalier attitude that we get sometimes. By the way, my husband has so much more empathy with the bc patients in his practice since I was diagnosed, because he was on the receiving end of this illness, and lived through the fear with me.
-
Yeah, I have often thought that should be a prerequisite to being an oncologist... Just like I think all pediatricians should have children. My husband is a pathologist and although he was extremely thorough before my diagnosis, he is that more attentive and he likes to get those diagnoses out fast for them.
-
Well sinc me y cords were broken last week my arm still feel much better from a pain and range of motion standpoint. The swelling I was getting in my forearm seems to have gone and it isn't coming back even though I am running and lifting and hauling three year old children around. I have purposefully stressed it to test it. I very hopeful that swelling and pitting was just from inflammation from getting manipulated. I also had thick cords in my upper arm that upon reading some of the great resources that Kira has sent me may have been a vein with superficial thrombophlebitis that was alongside my cords. All of that stuff has softened. I keep measuring My arm obsessively and it isn't changing. I will continue my MLD and precautions. I still live in fear of every bump or wound. I have a lot of clothes that I am afraid to wear because the sleeves are tight. I cut my thumb just now opening my lunch and am furious. I clobbered my german shepard today when he jumped on my arm and scratched me. I hate living in fear of the lymphedema monster.
-
My dog jumps when I put on the leash, she's half shepherd, and once she really got my bad arm with some deep scratches.
Glad the arm is settling down.
Do you have twins? you mentioned three year old children, and I figure there are three. -
So glad for you that your arm seems to be settling down, Jpmomof3. I sincerely hope that you do not get LE. You have enough to deal with as it is. Yes, my DH is also more diligent in getting his bc patients specialist appointments as soon as possible, to get their tests and scans done asap, and to get the results to them as soon as he can. Once you've lived through that first stressful stage with somebody, you are changed . . .
-
I have three kids indeed! 3,6,9 year old... And a one year old German shepherd. I hope your arm was ok!
-
I feel like I am always protecting my left arm now. I was at Costco and bought cases of water, tea, etc., but lifted them with my right only using the left to support. Maybe this is the best way to keep the LE from going to my arm??? My cording is still here. The PT has done massage, I have done massage, streching, etc. I suppose I will just have to see if it goes away in time like the two other times.
On of the worst things about BC is that when something happens to me now, I am always concerned it will be permanent. Before BC, I was very healthy and NEVER thought this way. This too shall pass was first and foremost in my mind. I truly HATE the idea of any permanent changes and BC has taken me there. My cording now goes from my scar under my arm, down my arm and even to the top part of my hand.
I called my RO to get a script for a sleeve and gauntlet. It's been 5 months since this all began and I want to be protected if I have to fly or feel like there is anytime that I may need to use it. I suppose I am stage 0 in the arm since the breast and trunk is stage 1. Anyway, I hope I can get the Lymphadiva sleeve since it is cool, but who knows what the insurance will pay for.
-
Rockym i know how you feel. i shop at costco too and lifted a bag of litter that i probably shouldnt have and my three year old wants to be picked up and the dog jerks my arm and then for days afterward i am pressing on my arm looking for pitting edema and getting paranoid. I am very anxious about LE because it is permanent. I hate that any of this is permanent. I can deal with the scars and the half boob but to have my right arm (right handed of course) taken out of action is horrible. but I am already limiting myself so I guess it is doing the same thing whether i have LE or not. I am afraid to throw a ball with that arm (try throwing one with your non dominant hand, it doesnt work...) or even open a jar. I thought i did something to my arm opening a damn spaghetti sauce jar the other day. I dont want to sound like an old lady asking for help unloading costco goods and opening jars. I hate this!
I got my sleeve and gauntlet too. I just dont know when and if I really need to use it. My PT recommended doing it during exercise but do i really have to if i havent had any significant symptoms after exercising?? She isnt a LE patient so doesnt really know how bad those sleeves are to use. not to mention the stigma. those sleeves are a pain in the ass! I dont want to wear it unless i have to! I almost feel like really pushing my arm just to see what i can do without triggering a problem. and if i do trigger a problem then I know to use the sleeve then. but i am afraid to trigger a problem... ack. i hate this!
-
There is absolutely no concensus or science to show that wearing a sleeve during exercise, if you are ONLY at risk is of value. Even in the PAL trial, on women at risk, I'll have to look at it again, but I don't think it was protocol to wear a sleeve/gauntlet.
Clearly if you have LE, it's a good idea, to help keep swelling down as lymphatic load increases.
Let me look it up more, and hopefully Carol has some time, as she is the exercise guru.
And yes, permanent sucks.
Spoke to a colleague the other day, and she admitted that she has significant, treatment resistant LE after treatment in 2010. I sent her to my LE therapist. Instant bonding.
-
oh thanks kira, I would be very interested about that. I have been keeping a (overly?) careful eye on the arm after i run and even lift weights. there is no definite swelling. I can imagine some slight pitting if i look inthe right light but it doesnt look any worse than when i dont exercise. And if it is there it is really subtle. I am a fan of just keeping a close eye on it for now. if the pitting becomes more definite i will wear the damn thing but goodness i hope i dont have too.
My cording is so very much better after the PT broke those cords in my forearm two weeks ago. i notice some across my antecubital fossa that have thickened up since then but they arent causeing pain or limited ROM yet. i can just see and feel them. Ahh the never ending gifts of BC..
-
Oh I also wanted to ask any of you that have had more experience... I have been trying to do my MLD massage but my skin is getting sensitive from radiation. Any advice whether i should just hold off on the MLD for now or any tricks to do the MLD but with less irritation of the skin? I havent broken out yet but i can tell the skin is going to start having issues soon.
-
JP--I worked for a rad onc for three years, you don't want to be pulling on radiated skin.
I'd suggest clearing the neck, doing deep breathing, doing the abdominal work--the 5 hands deep massage--press in a rolling motion toward the belly button and repeat five times in each position--go as deep as it feels comfortable and resisted breath--take a deep belly breath and hold your hand in each of the five positions and resist at full inhale, exhale fully and move the hand to the next position for the next inhale-- and some arm work, if needed to go to the back of the shoulder and drain to the neck--but you can omit the arm. Just clearing the core is good enough right now. IMO.
During radiation, your skin is fragile and needs a break from any friction.
" mce_src="" alt="" border="" hspace="" vspace="" width="" height="" align="" /> -
Kira and JP, I wear a sports bra a few days out of the week and use the swell spot when I feel the need, but I suppose breast and truck LE are just hard since the fluid just likes to stay wear it is. Even my PT said that it's not like an arm where you can move the fluid out and see the difference.
I think once I get the sleeve, I would use it for flying. There seems to be a lot of consensus about the pressure change, so I could deal with a sleeve for that. Also, if I have the sleeve, I will probably feel safer in case there is some swelling. I asked my PT about wearing my one size smaller under armor shirt as protection and he thought I'm better off with a sleeve for protection. Who knows??? Haven't flown yet anyway :-).
-
jp, Kira is correct that during the PAL trial, sleeve wear was optional for those not yet diagnosed with LE. At the recent NLN conference. Dr. Schmitz told us that in the pre-PAL study--the small, pilot study that helped determine the bigger trial design--they let even those diagnosed with LE choose whether to wear the sleeve or not, and the results seemed not to differ according to sleeve use. She was quick to say that this was a small group of study participants; the actual PAL trial had a lot more women, where all those with diagnosed LE wore the sleeve, so she does not want to generalize and suggest that sleeve wear is optional for those with diagnosed LE.
I think there's a quandary when considering whether to wear a sleeve if you've not been diagnosed with LE but are at risk. We can have up to 30% added lymph in the limb without noticeable swelling, so unless we're crystal clear on what kinds of sensations signal early LE, I do wonder how many of us would realize we're in stage 0? I know that in my own case (SNB took 5 nodes), I went for evaluation for truncal LE, totally clueless that I had arm LE. I was measured by a perometer, which is highly accurate, and I was shocked to learn that my SNB (and non-dominant) arm was more than 10% greater in volume than the other arm. I could not see any swelling, and I had no symptoms that I was aware of, except in the truncal area that was bugging me. It wasn't long afterward that, before I had a sleeve to wear, that I developed the classic sensations for subclinical LE--tingling, heaviness in the arm, and aches.
JP, you are lifting weights in the gym, and I can understand the temptation to just push it and see if you can figure out what stresses the arm, but I'll play the contrarian here. I believe that strengthening the arm helps lower the risk of an LE response to say, lifting those boxes at Costco. With a stronger arm and torso, lifting something heavy will be less likely to trigger a lymphatic response, or the inflammatory response that we recognize as muscle soreness after overdoing it.
A few months ago, my trainer commented that he is certain my LE arm is stronger than my unaffected arm, because I lift dumbbells, and he can easily see if one arm has greater strength and control than the other. I'm not lifting very heavy weight --15 lbs in each hand on a chest press--but it's enough for him to see a difference. When I do the classic bicep pose, it's also clear that the LE bicep is more sculpted than the other bicep. I was a bit puzzled by this initially, and just laughed that it must be the magic sleeve. And then at the NLN conference, the amazing Debra Cordner Carson was keynote speaker. She is an an elite cross-fit athlete with LE of the leg. She trains in and competes in compression, and she about made me jump out of my chair when she said that her LE leg is stronger than her non-LE leg, and she thinks it's because of the compression garment--which causes her muscles to be working against resistance.
So, my thought is that if I want to give the darn LE arm all the advantages I can to NOT blow up, I should take advantage of all the tricks I can muster to get it nice and strong, but safely. So slowly progressive weight training following the PAL guidelines, and wearing compression. It seems to me that lifting weights while wearing compression does double-duty here: the compression is probably giving me some minor protection from harm as I lift in the gym (although even Katie Schmitz seems not so positive about that), and it also seems to be giving me a strength-development boost. I wear the sleeve in the gym--not a soul has ever asked about it--and then go about my daily life. I am strong enough to feel comfortable lifting suitcases, groceries, or little kids, but I would find another way to roll a boulder, lift a 50-lb car battery, or the like. I don't feel like I'm missing out on much and remain committed to continuing to work my way up the weights in the gym--and I look forward at some point to feeling confident moving a scuba tank again, being a better helper to DH when we lift our kayaks, etc.
Bottom line: You're worried about LE, and like all of us you just hate the thought of it. Why not wear the dratted sleeve to see if it can help you with the strength-boost that in turn, might lower your LE risk? Maybe experiment by wearing it to see how it helps you, instead of looking at it the other way--experimenting by not wearing it to see what stress your arm can tolerate.
I'm right there with you on the hate-LE, hate the sleeve, hate the reminder that it is.
Carol
-
Hey Kira and Carol, thanks for all that info. You guys are a great resource. I am glad that they are even studying some of this stuff and glad to hear that you are exercising with LE and doing well and even stronger on the affected side. What are the PAL recommendations? do you have a link to them? I will give the sleeve a try with the weight lifting. it does make sense NOT to trigger an episode. I am just so uncertain whether this very mild pitting i get in my forearm is really significant. My arm doesnt measure any different before or after exercise. But i guess i am not surprised that we can have a significant lymph build up in the arm without being able to tell. I will ask my therapist about a perometer.
I am also rather bummed about how much my therapist discouraged playing tennis. I havent played in a while but wanted to start again. Any of you tennis players out there??
And do you think i can do the MLD on the arm and not cross the radiated skin or should i stick to the core stuff and the breathing?
-
JP--I played tennis three times a week when I was diagnosed, and haven't played since. I had bad tennis elbow, and I'm left handed, and my LE is in my left hand/arm, and I just can't predict how hard I'll hit a ball. I want to play....My next door neighbor was my partner and keeps asking when I'll be back.
Kira
-
jp, UPenn, whose team conducted the PAL Trial, gives the actual exercise program only to PTs and certified personal trainers. You can ask for the program here: http://www.penncancer.org/physical-activity-and-lymphedema/receive-pal-intervention-materials/
You're most likely to receive the program if it is a PT or certified trainer who fills out the form.
Another strategy is to organize a workshop--if you go to www.cancersurvivorfitness.com, you can reach the woman who was the lead personal trainer in the PAL trial--she trained and supervised all the personal trainers working with study participants during the 18-month trial. She will come to you with a one-day hands-on workshop for personal trainers and LE therapists. I brought her to my tiny town, and I had no trouble recruiting financial help from two regional hospitals and another sponsor, to help pay her travel expenses. She charges tuition for the participants, but it's not a lot, and the trainers and therapists who came for the day were very, very pleased with what they learned. This is a great way to bring PAL to a lot more BC survivors than if you get your hands on the protocol materials.
My arm size does not change after exercise, but after an hour of lifting in the gym, I do feel much more tired in that arm than in my other arm. In July, I spent five days in a kayak, paddling up to 9 hours each day. I wore sleeve and gauntlet at all times and I never had any LE blow-up swelling, despite what is arguably really bad for an LE arm: extremely repetitive motion against resistance. But--wow, was that arm tired each day, all day. My other arm could not have cared a whit about the paddling, and in a kayak, padding is an equal-arm-opportunity activity. So clearly the weight lifting had delivered the strength I needed to paddle all day without any seeming effort on one side, and the strength was there on my LE side, but apparently not enough to prevent achey-tired feelings. I thought it was a tremendous victory that despite the aches, I never swelled, and I chalk that up --rightly or wrongly--to have patiently built strength with the slowly progressive weight lifting. I had my one-year bmx/diep anniversary while paddling, and it meant a lot to me that I'd been able to come back that strongly.
I don't think we give up what we love to do; we just look for ways to re-enter sanely and safely. I'm not a tennis player but given my maniacal insistence on paddling again, I'm sure that if I did play tennis, I'd be out there giving the ball a whack. But only after feeling I had built strength in arm and torso, and well..a little whack at first, to see how the arm responds. I did quite a few short paddle runs before committing to camping from a kayak for the week.
Go for it, JP! Build up / warm up / trial run / assess response / adjust....
Carol
-
You ladies have given me hope!
-
Time to share some good news... the cording in my arm has subsided! I can still feel the last piece of the cord in my wrist and hand, but I'm guessing it's on the way out too. I am so sick of worrying if each incident is permanent. I am getting fitted for a sleeve and gauntlet on Tuesday. I've accepted that the LE is going to come and go, so I will take precautions. I hope insurance will pay for a lymphadiva sleeve :-).
-
Rocket--
My PT had sales rep visit me at pt center and he checked my insurance first and found it paid for 8 pieces a year so i did lots of shopping since all deductibles met and before end of year.
I didnt think i would need that much since initially only wore sleeve to fly but since LE went from just truncal to now arm. They get dirty faster than i thought so glad i have more. Make sure they tell u the max number u can have. I hope it pays for you-- insurance is such a PITA when u really need it to come through for u. -
Thanks Pink, I will see about at least 2. I know I have 100% durable medical and both my wigs were paid for so I'll have to see how this plays out. Maybe if I already have a few in mind, I can tell them at the facility I am going to what I want.
-
I have the cording too..... read that article and it really scared me, since I have this cording 2-3 weeks after surgery just like they say, it seems I am almost guaranteed to get LE too (what did it say, 18 of 23 did?). I don't want it!!! Is there ANYTHING I can do at this point to maybe prevent it? I was careful to take it easy, no exercises for the first week, no physical exertion, no heavy lifting, etc. I'm doing very gentle stretching exercises now, and still being careful not to lift anything heavy enough to require effort, not putting any kind of pressure on that arm. (For how long do you take these precautions anyway??) Anything else? I'm going to be asking about a referral to a physical therapy program next time I talk to the doc. I don't think they have a LE specialist, though.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team