Lymphedema Education and Prevention

AngieD

Just wanted to throw this out and see what others' experiences have been:

It seems lympedema education and prevention in cases where only a few lymph nodes are removed in controversial. I had 3 lymph nodes removed. My BS said, "No worries," use that arm for BP checks, blood draws, flying no problem,etc. My MO said she wanted me to see a Lymphedema Therapist. The therapist gave me exercises to do, massages, and lots of information. She also told me of a former patient in my situation who had no problems until she had an airline flight and then it was too bad and too late to reverse it. So, with the upcoming overseas flights I was looking at, I ended up buying a sleeve and gauntlet. The therapist checked me out on getting it on properly. I had no problems with the flights, and maybe I wouldn't have anyway--but I decided, why take the chance? From what the therapist told me, it seems MOs are beginning to order more therapy (maybe because they see patients longer term?). And surgeons continue to poo-poo the idea unless a large number are removed.

Angie

Dawne.Hope

FRUSTRATING!
Angie,

Thank you for posting.

I have bi-lateral LE.

I had a DMX and sentinel nodes removed on both sides and the ignorance re LE from my BS, PS, and arguments I've gotten into with nurses when I tell them 'no' to BP ... is maddening!

The best site I've found for information is this one:

http://www.stepup-speakout.org

I'm glad that your MO insisted on you seeing a therapist and you have the tools you need to fight it if it rears it's nasty head.

Lymphedema is not the very rare side effect of treatment that so many seem to think it is. It is more prevalent than many let on. It truly is the dirty little secret of breast cancer.

cinnamonsmile

I only had sentinel nodes
I only had sentinel nodes and ONE axillary node removed and I have mild LE. There are a bunch of us on breastcancer.org that talk about it a lot.

My surgeon also said not to worry. I didn't worry until the stupid surg tech put the cuff so tight on my arm, I jumped in pain. Then when I let her do it on the lower arm, it hurt for over a week.

I don't have an oncologist so I had to pretty much fend for myself.It's been a disaster trying to find someone in my area for LE therapy.

I wish I would have been more pro-active about needle pokes in the left arm and made them do leg blood pressures sooner.

You can get LE from sentinel node removals, too! I know my surgeon poo-pooed it too. She left the area, and I would love to give her a taste of my LE poo-poo.

I have the double whammy of mild LE and post mastectomy pain syndrome.

There are a bunch of us with mild LE on breastcancer.org that discuss the problems with getting diagnosed and getting someone to help us.

I complained all summer and fall of 2011 to the therapist I was seeing for scar tissue adhesions. She took arm adn finger measurements. I complained of LE symptoms the whole time and she did NOTHING until my last session and gave me 5 -10 minutes demonstration of MLD on the arm.

It took me a year to find another one who was supposed to be really good and knowledgeable about LE. bullcrap. All she did was massage me. I had to ask if I needed sleeves (she didn't offer gauntlets but now my fingers swell adn are hard to bend sometimes). I had to ask if there was anything I could be doing at home. She gave me a sheet of instructions for MLD. She never gave me any exercises to do at home. I think all she wanted to do was yap about her life to me. She was not the "star" they made her out to be.

So I guess I depend on here and breastcancer.org to learn about what I should be doing and that is damn disgusting. We have a metropolis of about 50,000 people and not ONE certified LE therapist or clinic!!

survivorbc09

Dawne.Hope said:

FRUSTRATING!
Angie,

Thank you for posting.

I have bi-lateral LE.

I had a DMX and sentinel nodes removed on both sides and the ignorance re LE from my BS, PS, and arguments I've gotten into with nurses when I tell them 'no' to BP ... is maddening!

The best site I've found for information is this one:

http://www.stepup-speakout.org

I'm glad that your MO insisted on you seeing a therapist and you have the tools you need to fight it if it rears it's nasty head.

Lymphedema is not the very rare side effect of treatment that so many seem to think it is. It is more prevalent than many let on. It truly is the dirty little secret of breast cancer.

I don't have lymphedema,
I don't have lymphedema, which I am grateful for, or at least, not yet. I do think every woman or man that has bc should be educated about the possibility of it and not have to wait until they actually have symptoms and are worried.

Jan

missrenee

cinnamonsmile said:

I only had sentinel nodes
I only had sentinel nodes and ONE axillary node removed and I have mild LE. There are a bunch of us on breastcancer.org that talk about it a lot.

My surgeon also said not to worry. I didn't worry until the stupid surg tech put the cuff so tight on my arm, I jumped in pain. Then when I let her do it on the lower arm, it hurt for over a week.

I don't have an oncologist so I had to pretty much fend for myself.It's been a disaster trying to find someone in my area for LE therapy.

I wish I would have been more pro-active about needle pokes in the left arm and made them do leg blood pressures sooner.

You can get LE from sentinel node removals, too! I know my surgeon poo-pooed it too. She left the area, and I would love to give her a taste of my LE poo-poo.

I have the double whammy of mild LE and post mastectomy pain syndrome.

There are a bunch of us with mild LE on breastcancer.org that discuss the problems with getting diagnosed and getting someone to help us.

I complained all summer and fall of 2011 to the therapist I was seeing for scar tissue adhesions. She took arm adn finger measurements. I complained of LE symptoms the whole time and she did NOTHING until my last session and gave me 5 -10 minutes demonstration of MLD on the arm.

It took me a year to find another one who was supposed to be really good and knowledgeable about LE. bullcrap. All she did was massage me. I had to ask if I needed sleeves (she didn't offer gauntlets but now my fingers swell adn are hard to bend sometimes). I had to ask if there was anything I could be doing at home. She gave me a sheet of instructions for MLD. She never gave me any exercises to do at home. I think all she wanted to do was yap about her life to me. She was not the "star" they made her out to be.

So I guess I depend on here and breastcancer.org to learn about what I should be doing and that is damn disgusting. We have a metropolis of about 50,000 people and not ONE certified LE therapist or clinic!!

Lymphedema--why is this such a mystery to doctors?!!
I had a total axillary dissection in Dec. '09 because I had 10 out of 23 nodes positive. Since then, I have had to do most of my research, therapy totally on my own. My surgeon and med. onc. (both of whom I love) were of little to no help. Luckily, one of my best friends is a therapist (but does not specialize in lymphedema), and she gave me a couple of names here in the Phoenix area. I asked why in the world aren't there more therapists and clinics that treat lymphedema patients. The answer in a nutshell--"money!" Because lymph therapy takes so long--treatments are usually at least an hour--clinics don't like to hire lymph therapists because they don't make enough money off of it. My DIL, who is a physical therapist in the largest physical therapy clinic in the Phoenix area, said she has to see at least 4 patients an hour. Their clinics (there are 4-5 in the area) do not employ ANY lymph therapists!

I do these things to keep this at bay: wear a sleeve and gauntlet every time I fly and keep them on for several hours after landing, never get B/Ps or needle sticks in the affected arm, see a certified lymphedema therapist, use kinesio taping (that she showed my husband how to apply and it works really well) and use a Flexi-touch machine that I have at home for massage and lymphatic drainage.

This is one of my pet peeves--breast surgeons, plastic surgeons, medical oncologists and radiation oncologists need to get more extensive training in lymphedema treatment. They have to start realizing it is a real problem for breast cancer patients.

Hugs, Renee

cinnamonsmile

missrenee said:

Lymphedema--why is this such a mystery to doctors?!!
I had a total axillary dissection in Dec. '09 because I had 10 out of 23 nodes positive. Since then, I have had to do most of my research, therapy totally on my own. My surgeon and med. onc. (both of whom I love) were of little to no help. Luckily, one of my best friends is a therapist (but does not specialize in lymphedema), and she gave me a couple of names here in the Phoenix area. I asked why in the world aren't there more therapists and clinics that treat lymphedema patients. The answer in a nutshell--"money!" Because lymph therapy takes so long--treatments are usually at least an hour--clinics don't like to hire lymph therapists because they don't make enough money off of it. My DIL, who is a physical therapist in the largest physical therapy clinic in the Phoenix area, said she has to see at least 4 patients an hour. Their clinics (there are 4-5 in the area) do not employ ANY lymph therapists!

I do these things to keep this at bay: wear a sleeve and gauntlet every time I fly and keep them on for several hours after landing, never get B/Ps or needle sticks in the affected arm, see a certified lymphedema therapist, use kinesio taping (that she showed my husband how to apply and it works really well) and use a Flexi-touch machine that I have at home for massage and lymphatic drainage.

This is one of my pet peeves--breast surgeons, plastic surgeons, medical oncologists and radiation oncologists need to get more extensive training in lymphedema treatment. They have to start realizing it is a real problem for breast cancer patients.

Hugs, Renee

It is just as bad for those
It is just as bad for those with post mastectomy pain syndrome! Too many medical professionals don't take our side effects from surgery seriously enough and know enough to help us!!Thank goodness for the American Cancer Society. I called there after my BMX and she kept prodding if there was anything else and I just started talking about my pain and it was the kind, prodding voice that helped me learn that I had PMPS. And it is because of these boards and those at breastcancer.org that helped me learn that I had LE!!!

There are two ladies on breastcancer.org, binney and kira, that really help us out! I even think Kira is an LE therapist with LE herself!!

GlowMore

cinnamonsmile said:

It is just as bad for those
It is just as bad for those with post mastectomy pain syndrome! Too many medical professionals don't take our side effects from surgery seriously enough and know enough to help us!!Thank goodness for the American Cancer Society. I called there after my BMX and she kept prodding if there was anything else and I just started talking about my pain and it was the kind, prodding voice that helped me learn that I had PMPS. And it is because of these boards and those at breastcancer.org that helped me learn that I had LE!!!

There are two ladies on breastcancer.org, binney and kira, that really help us out! I even think Kira is an LE therapist with LE herself!!

Trying to keep up

Hi Ladies.......  I am learning so much reading all this...but lots of the abbreviations are ones I just haen't taken the time to learn.....   What I do know is that back in 2002 I was part of the Sentinel Node Study where they used the Blue Dye on you when they did the Lumpectomy.  And because of being a part of that Federally Funded Study I was given extra instruction about Lyphodema before the surgery.   They measured my arm and told me I would be part of a long Follow Up Program....BUT....after the Lumpectomy and after the discovery that 6 out of tje 19 Lymph Nodes they scooped out from under my left arm had Cancer in them.....THEN....I was not followed up on any longer.  Well, except that I did receive a letter this year about having been a part of it and how I could see the results online.  Anyway...I did know from the get go not to EVER let them do Blood Pressure on left arm or EVER get a shot in left arm...and found out later the hard way not to EVER do Resistant Exercise with Left Arm...even to the point of sweeping the floor or raking leaves.  Because when I do my arm begins to swell a tiny bit...and burn etc...and that is NOTHING compared to what you gals are dealing with and I do feel blessed that it is so insignificant...however..... it can come on at any time so being aware is so important and I just can't believe the attitude of some nurses and doctors as you are telling us here.  It is really appalling and needs to be addressed for sure.