STEAM ROOM FOR ANGER
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Oh, and Marijen, thank you for that link—I mean, I'm not happy at what it says, but it's information I can ask my MO about.
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Chelsea, please tell us what she says. I doubt mine has any knowledge on Luminal A. I didn't get a Ki67, a Mammoprint, an Oncotype, only a grade two. My BS said he never had a patient get LE, that turned out to be wrong. No CTC either. My ALND was radiated.
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Humm....I only know mine was Grade 3, huge and with a high K67. And, ER +...HERS neg...
After reading what the report says about "high heterogeneity" - I feel like I might as well forget about saving for retirement. F*ck.
I don't know why my MO thinks I *only* have a 5% chance of recurrence. She says I have very good tumor markers. But, I've read that those don't always matter - either. (Maybe she's got my chart mixed up with someone else's who was only dx'd with Stage 1).
I don't know - what to think or what to tell myself. :-(
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Do not trust ANYONE! Do your own research, that is what I have learned. I have one of the most respected oncologists out there but I speak to him for less than 5 minutes at each appointment. You are your own best advocate.
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Oh yes you can get lymphedema with just one node removed! It not only shows up in the arm but the breast, armpit, side and on bad days I feel swelling in my neck!
I do pretty well managing it on my own although sometimes, for unknown reasons, it gets way out of control. But no one was on it other than to tell me to buy a sleeve. There is good info on this site at the Lymphedema threads.
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yeah, i was told (in passing) by a nurse that I shouldn't draw blood or do BP on my left side anymore. She didn't say why, I looked it up here later..... geez. I will say I was overwhelmed by all the info at first but I'm glad I've done and continue to do my own research. It makes me feel more in charge of my life. (at times)
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Funny to have a BS tell you they’ve never encountered LE...of course not, we’re well beyond seeing you by the time it happens. They’d probably be shocked on what their real number is. It doesn’t matter how careful they are, it doesn’t matter how many nodes they take, it doesn’t matter if any of the nodes are positive or not, it doesn’t matter the stage/grade/type of cancer, and it doesn’t matter how long it’s been since your surgery. The risk of LE is always there and it can flare up anytime it wants to. It has to do with the lymph fluid not being able to drain properly and it backs up causing swelling and pain.
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You took the words out of my mouth, Lula.
ANYTHING, doesn't matter how small - even one little node removal, can disrupt the lymphatic system and cause problems either immediately or years down the road.
L
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Has anyone here had LE years down the road? Like 4 years later or more? I lift weights so after reading Runor, Lula and Lita (sounds like a movie title lol) I’m starting to get a bit worried. All my MO & NP say is ‘be careful’ but have never said to stop. I did tell them that I increase the weight VERY slowly. The only prob I’ve had so far is with a small area of LE on my right ribs(from rads) getting a little sore if I work my upper body too hard. I’ve never had a problem with my arm. Should I be worried
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Egads - I don't lift weights, but have been terrible about LE precautions. I do EVERYTHING in my classes at the gym. Push-ups, tricep dips...and on. I don't hold back. I hope I don't regret this!!!!
I think - pay very close attention to what you feel...but I could be wrong. I probably don't know - what *I'm* doing!!!!
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Dancing, I hear ya there! I'm constantly checking out to see if my fingers or arms are swelling after each set, especially (like you) on dips, push up, pull ups and bench press. I've recently started dead lifting (just with bar so far, 45 lbs), but I'm dying to add weight! I can lift heavier, but for the time being I'll be patient and in a few weeks add 5 lbs to each side. Man, is that ever going to look ridiculous, 5 lb plates are about the size of tea cup saucers LOL!! Meh, I don't really care what people think, it'll be good for a laugh. My goal is to 'power clean' (like you see on tv where the guy lifts and heaves it over his head). Don't know if I'll get there, as you say I probably don't know what I'm doing.
Glad to see you feel better today, I saw on the other thread that your class went well last night. I love your passion for the gym, I feel exactly the same way....such a rush!!
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LOL Egads!!! I love that pic!!!! I seriously feel the same way you do!!!! Thanks for the kind words!!!
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Apparently the risk of LE increases dramatically if the area is radiated. I had 24 nodes removed, and then the whole area irradiated, and LE popped up shortly after rads finished. (less than 6 months after surgery). 3 years later, it's still an issue. I wear a Medicalert bracelet on my right wrist to stop anyone poking / stabbing / squeezing the arm. At least it makes them ask!
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I have had 35 nodes removed from my left arm. Every single node in that area. About three week days later, it became heavy and painful,and very tingly. that is when they decided to remind me how they glossed over the percentages of getting it. I immediately saw a therapist and took control over it. I did not have radiation. I wear a light sleeve everyday, and when it's not on. I can tell. I have been told I have a very mild case, which I find interesting because every node was removed. The inflammation and predisposition is there no matter what if you had any nodes removed. It can be extremely painful, I had to wrap it daily for months. Decompression wrapping. I even have a pump that I keep on hand for flare ups. My breast surgeon that just did my recon... is a lymphedema specialist, which is why I chose him. Don't want to let the bear out of the cage. He looked at my arm during surgery and said there was scar tissue that he released. It does feel less full and better. It is unfortunately another chronic condition we have to manage. He also did tell me increasing weight too much during exercise can really over extend the fluid in your arm that has no where to go in a hurry, due to inflammation. So it swells even more. It's times like that you don't want to scratch yourself. Infection would run high. Daily massage and elevation helps as well! It's awful that we have to learn by trial and error. Not by guidance from our medical team. It's really backwards. Good grief. ~M~
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Thanks for that info Suems.
I just had 26 lymph nodes removed and will be starting radiation in two weeks or so once tissue expanders are filled.
I am seeing a lymphedema Dr next Fridaywhich will be before radiation. I will ask her if there is any way to prevent it but my BS said it is 30% likely I will get it due to the number of nodes involved
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Suems - I think the bracelet is a great idea! I’m also thinking I’ll invest in one.
Micmel - thank you for mentioning the caution on scratching. The verysmall area I have does get itchy when it occasionally flares...good to know! Do you do self massage or see a massage therapist that specializes in drainage? 35 removed, man oh man do you have ever have a full plate! I’m sorry to read about all the problems you’ve had with it, can’t be easy! It is crazy that so few of us ever got any direction with this issue.
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Micmel, that doesn’t sound like a mild case to me. It sounds terrible. I had 12 nodes removed that required at least 30 trips to LE PT over two years. Mine gets worse with heat as in hot weather.
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i know it is a lot. But once I got it down to a manageable swelling, after learning to wrap it when I needed it and then the pump whenever I over do it. Like for example the last time I used the pump was Christmas because I am stubborn and picked up something too heavy. But it is very slight and the reason it isn't terrible, is because I went into therapy right away. I just take my hand and always make sure the strokes on my skin are going towards your heart and always light strokes, not heavy massage treatment strokes. If you start to see problems occuring and it becomes something the doctors and therapy isn't helping. , because I noticed that I needed a lot of sessions. The co pays are crazy, like a car insurance bill.. That's why I payed close attention, and did what I could alone. The pump Is what made a big difference, it is like having a personal therapist waiting to help me. I got the pump from an organization called Connie cares. If any of you should need relief, and haven't gotten any, this helped me tremendously! Just goggle it. If you don't have insurance, they will get you one anyway. Mine was delivered to my door, I didn't pay a dime and my insurance did cover it. So glad to have it. It's something that needs higher importance with these doctors for sure! The entire crappy cancer experience is exhausting ! Goodnight ladies !! ~M~
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Egads, I have found that exercise has helped me, not harmed me. So in regards to your weight lifting I think you should be alert and cautious, but not worried. I lay on the floor and do stretches with my arm and body in every imaginable contortion, many of them painful, but it helps. I shovel and rake and dig and use lopping shears and none of that seems to flare me up. However...chopping wood, which exerts a lot of concussive force on my arms, that seems to flare me up. So as long as you do what you do and try not to jar yourelf brutally. For me that jarring has been a problem, not the exertion of muscle.
The other thing that is bad is when my arm is inactive at my side for an extended time. Like now, seated, typing. Or at the sewing machine. Or sitting watching tv. I try to watch tv with my arm raised straight above my head. I look like an idiot.
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Runor - you make an excellent point. I’ve taken 3-4 years to build up to the weights I’m at now, slowwww. If I hadn’t had cancer I would be at twice the weight in half the time. If I’d listened to bodybuilding.com or even my the trainer I used at the start, I’d be a swollen mass from LE. Instinct and indications from my body (perhaps some luck too) and not the very little info I got from my MO prevented it. However, and as you said, whenever I jar the muscles either by going too hard, too fast or too long, or cockily using weight instead of body weight on a new move, then bingo! Up comes the LE under the ribs and the ache sets in. You’re right again about inactivity, that sets it off faster than a duck on a June bug. Two days ago I was in the yard raking and now my ‘bad side’ wrist feels broken from the twisting & pulling motion you make with the rake. I basically ‘jarred’ those muscles in a new way, muscles that can take 3 sets of 45 lb deadlift or 100 lb chin ups. The next time I’ll do what you suggest and what I do in the gym, a slower/shorter build up...or just hand the rake off to my kiddo lol.
As for watching tv with your arm up in the air, nawwwww you don’t look like an idiot, you look like that smart kid in class that wanted to answer the teachers question first! If you added a quick upward reaching motion, you could yell ‘Mr. Kotter!’ And do a great imitation of Arnold Horseshack LOL!! seriously though I know what you mean, I do the same with my leg while sitting, extend it out to stop a tired feeling in my hip. I look like a turnstile
Slow and steady wins the race. Thanks for the input, it helped.
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DH wears something called a RoadID bracelet. He runs off road where, if he fell or was injured or collapsed, the bracelet would give someone his basic info. We decided to get me one after my surgery, etc. They come in different sizes and lots of info fits if you want. Mine has just the arm limitations, etc. Probably cheaper than MedicAlert.
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My mother had 7 nodes removed during lumpectomy/SLN surgery. All those nodes were completely encased in cancer cells or replaced by cancer cells. Doctors went back for another surgery and removed another 15 or more nodes. She then had radiation on that breast and armpit.
No one told her about lymphedema. No compression sleeve. Her arm grew and grew. They did stop taking blood and doing BPs on that arm, but the damage was done.
She also had vascular dementia. She wasn't going to be asking questions about LE. Surgeons and MO really need to be proactive to protect patients from LE.
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im fortunate that my hospital has a le clinic. Before sx they measued my arm and hand to have the baseline in case. I was given a sleeve for if i go to high elevations or fly, so i knew. Bs took out 2 sn nodes and 2 axe. Micro mets in 1 sn, the rest clear so didn't pull more. He knows his stuff. With a 7 cm tumor at the 2:00 position i thought he'd pull more. It sucks that some bs and mo dont say anything about this incurable thing that may be prevented if you know how to treat the affected arm. We all also get educated 1:1 with a RN who tells us what to expect from before sx, sx, after sx and then an rn from the infusion sits with you alone and goes over the chemo info binder you are given. Very thorough. It's not a big hospital here but they are very thorough. I always recommend washington hospital in fremont for anyone in the bay area.
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Jaycee - Thanks for the link! I just might get me one of them. I also found some jewellery type on Etsy and Amazon I might be purchasing as well. Can't have enough bling!
))Mominator - I'm sorry about your mom's experience! When I consider that even a simple follow up chat session, class or information sheet handed to patients or caregivers by MOs, BSs or ROs could have saved your mother and others such a dreadful result it makes me shake my head. It's ridiculous! I had one tiny mention of it by my RO who said he would have the LE clinic contact me. They never did. My LE is small and not much of a problem, so in my ignorance I let it go. I had no idea how serious it could get until I found these boards.
Rosabella - Glad to see you were smart enough to pursue it, unlike me. If even one of my team had said the words 'could be serious' or 'highly recommended that you go to LE clinic to prevent' I would have been there in a flash.
As I said, at least a simple pre & post treatment fact sheet listing all SE and LE risks(and more!) should be gold standard to all patients. Why in the hell should I have to find out the hard way that I'm taking or doing something that could lead to horrible consequences?? I had a great team, but I guess only in the moment. I'm shaking me head, it just doesn't make sense.
I'm so grateful nothing has happened to me so far.
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Egads, Oh! Oh! Oh! Your age is showing! (OUR age is showing) Welcome back ... la la la.
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1996, My twins standard complaint/joke/ anger was that she had to find out about the LE clinic from her plumber.
He came to fix something and she was recovering. There was a major LE clinic at the Karmona Center in Detroit. His wife was going to it. She being a Detroit PD sargent at the time, never minced words. She took the surgeon and the MO off at the knees.
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Wow!!!!!
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Sas - Providing even the most basic care information is sorely lacking and unfortunately seems to be a common trend around here, Having to find out about help for LE from a plumber takes the cake! I think the next time I'm in my MOs office I'll enquire about my plumbing issues, betcha' they have an information sheet on it LOL!
Runor - No kidding! I remember watching the very first show and falling in love with John Travolta on the spot.,,,,,,seems like that was 5 minutes ago!
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Barbarino. Atitca atitca ! I was like 5 then wow.
Korshack? That's all this brain can Muster!
Good morning lovely ladies
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Good morning Micmel!....you were 5 years old then? God I am old.
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