Lymphedema

Chellebug

lynn1950 said:

My routine
Our stories and ways of handling the lymphodema are similar. I was diagnosed in February 08. But actually I felt something wrong a year earlier, but my feelings were discredited. So I guess I've been surviving with cancer for years. But that is not how it is counted officially, and I'm not sure what is politically correct.

I had a bilateral mastectomy in early April of 08, followed by 8 sessions dense dose chemo during the summer. Radiation started the end of August and I didn't start losing that "inner peace" until about 3 weeks before the end of radiation. Everyone thought I was so strong! I tried to cope, but went straight down the rabbit hole and ended up being hospitalized 3 days for panic attacks about a month ago. I started seeing a counselor and she has been great. I had never cried about my cancer - couldn't, but she helped me to cry. In addition, I saw a psychiatrist a couple of weeks ago and she diagnosed anxiety and depression...well, duh. She said the dose of effexor my regular doctor had me on was not therapeutic and I am in the process of doubling it; it takes a while.

I don't wear a bra, so I don't know much about a prosthesis, or how they work. I had a bilateral mastectomy.

I feel so inspired by the information you have shared with me. You are a Christmas present! Since radiation, I have always had very mild swelling in my lower left forearm. I do manual drainage massage every day - like you, in the shower, or in bed. I did stretching exerises for 8 weeks and pretty much have full range of motion. Once I stopped the range of motion stretching, I never started a lymphedema exercise routine (one more thing!), but probably I should. Occasionally I walk my hand up the wall. I like to swim laps at our local hot spring pool and that helps me too. I think of that as good lymphedema exercise, but maybe I'm fooling myself. I've been swimming about twice a week and wish I could swim more often. I also do a mild form of yoga using a CD by Jon Kabat-Zinn. I listen to his meditation CD as well.

I have to say that I am really struggling with this "new normal" and try to have faith that I will be able to come to terms with it.

Thanks, Lynn!
Thank you for sharing your experience with me, too!!! It is comforting to hear that you are finding success in the things you are doing.....and that I'm not the only crazy one swimming in the winter!!! I'm lucky to go once or twice each week....though my goal is to go 3 or 4 times.

I went without breast prostheses for a long time after my bilateral mastectomies. But one day I just decided I wanted something there. I don't wear them every day, but I'm glad to have them on occasion.

It sounds like we will struggle through this 'new normal' together.
Chelle

Marcia527

I got a referral from my
I got a referral from my surgeon because my arm froze after surgery. I went to a PT who happened to specialize in lymphedema to get it going again. They are the ones who told me about lymphedema. No one else had mentioned it. Maybe because I didn't have it, the surgeon/oncologist didn't mention it.

cabbott

Marcia527 said:

I got a referral from my
I got a referral from my surgeon because my arm froze after surgery. I went to a PT who happened to specialize in lymphedema to get it going again. They are the ones who told me about lymphedema. No one else had mentioned it. Maybe because I didn't have it, the surgeon/oncologist didn't mention it.

More information on lymphedema is needed!
There are websites and books on lymphedema. It happens to anyone who has surgery where the lymph nodes are disturbed, not just breast cancer patients. Massage can stop or reverse swelling, but it has to be the right kind of massage. The deep massage stuff folks do to make a sore back or sore muscle feel good can make lymphedema worse. Even the gentle massage done in the wrong way can cause more problems than not,so learning from someone who is trained is really important.

My hospital gave me a handout on some of the usual ways to prevent lymphedema from happening. I was never a terribly girlish gal growing up, but skin care is very important in preventing lymphedema. I use shea butter or hand creams nightly. I keep rubber gloves by the sink for washing the dishes. I make the doctor give me bactroban for little cuts and scrapes on my right arm or hand just in case. I bought an electric shaver to use instead of a disposable. Overuse of the arm is a problem too. Mind you, exercise can be very useful in strengthing the arm and increasing drainage. It is overuse stuff that should be avoided. My doctors urged me to go to the gym on a regular basis and even do strength training--just avoid the "burn!" if you know what I mean.

So far the only time I've had a problem was when a cuticle on my pinkie got infected. I hadn't used the rubber gloves and knew I had a small cut, but I washed those dirty dishes barehanded anyhow and got a swollen hand and a hot feeling in my finger the next day. None of the doctors in town knew what to do about it. They suggested ice and raising it over my heart. I had read the book on lymphedema and knew that wasn't quite what I needed. I needed the infection under control. That's when I found that bactroban worked on infected fingers and the like. Yeah, I did a no-no and "borrowed" some of my son's stuff. It worked. Later my surgeon told me to call his office for emergency antibiotics if I EVER had an infection in that arm again. Any swelling should be treated right away. If it persists, it will be much harder to treat. Then I asked my regular doctor for my own prescription of bactroban. I use about one tube every three years, but at least it is there if I need it for the little stuff.

C. Abbott

lynn1950

When do you become a "survivor"
Chelle...The folks in the chat room say that you are a survivor the day you are diagnosed. I wonder if other people count it differently. Lynn

lynn1950

cabbott said:

More information on lymphedema is needed!
There are websites and books on lymphedema. It happens to anyone who has surgery where the lymph nodes are disturbed, not just breast cancer patients. Massage can stop or reverse swelling, but it has to be the right kind of massage. The deep massage stuff folks do to make a sore back or sore muscle feel good can make lymphedema worse. Even the gentle massage done in the wrong way can cause more problems than not,so learning from someone who is trained is really important.

My hospital gave me a handout on some of the usual ways to prevent lymphedema from happening. I was never a terribly girlish gal growing up, but skin care is very important in preventing lymphedema. I use shea butter or hand creams nightly. I keep rubber gloves by the sink for washing the dishes. I make the doctor give me bactroban for little cuts and scrapes on my right arm or hand just in case. I bought an electric shaver to use instead of a disposable. Overuse of the arm is a problem too. Mind you, exercise can be very useful in strengthing the arm and increasing drainage. It is overuse stuff that should be avoided. My doctors urged me to go to the gym on a regular basis and even do strength training--just avoid the "burn!" if you know what I mean.

So far the only time I've had a problem was when a cuticle on my pinkie got infected. I hadn't used the rubber gloves and knew I had a small cut, but I washed those dirty dishes barehanded anyhow and got a swollen hand and a hot feeling in my finger the next day. None of the doctors in town knew what to do about it. They suggested ice and raising it over my heart. I had read the book on lymphedema and knew that wasn't quite what I needed. I needed the infection under control. That's when I found that bactroban worked on infected fingers and the like. Yeah, I did a no-no and "borrowed" some of my son's stuff. It worked. Later my surgeon told me to call his office for emergency antibiotics if I EVER had an infection in that arm again. Any swelling should be treated right away. If it persists, it will be much harder to treat. Then I asked my regular doctor for my own prescription of bactroban. I use about one tube every three years, but at least it is there if I need it for the little stuff.

C. Abbott

Thank you
You are such a wonderful writer.

cabbott

lynn1950 said:

When do you become a "survivor"
Chelle...The folks in the chat room say that you are a survivor the day you are diagnosed. I wonder if other people count it differently. Lynn

Survivor Question
Count it any way you want. What you think and feel is all that counts.

C. Abbott

lynn1950

Chellebug said:

Thanks, Lynn!
Thank you for sharing your experience with me, too!!! It is comforting to hear that you are finding success in the things you are doing.....and that I'm not the only crazy one swimming in the winter!!! I'm lucky to go once or twice each week....though my goal is to go 3 or 4 times.

I went without breast prostheses for a long time after my bilateral mastectomies. But one day I just decided I wanted something there. I don't wear them every day, but I'm glad to have them on occasion.

It sounds like we will struggle through this 'new normal' together.
Chelle

Swimming laps
Do you swim laps. All of a sudden I've gotten a sore shoulder (feels like in the tendon) of my lymphedema arm. I'm not sure how to handle this. Ever happen to you?

mmontero38

lynn1950 said:

Swimming laps
Do you swim laps. All of a sudden I've gotten a sore shoulder (feels like in the tendon) of my lymphedema arm. I'm not sure how to handle this. Ever happen to you?

Hi Lynn: My shoulder
Hi Lynn: My shoulder actually got stiff and I couldn't lift my arm or extend it out. I had to go to therapy and they did exercises and massages. I've now joined a gym and do the nautilus machines for the upper body and lift 10 lb weights only. This has improved my shoulder considerably. I think this happens because as they remove lymph nodes they must move muscle and nerves as well. Speak to your doctor as you may need to go for physical therapy. Hugs, Lili

Chellebug

lynn1950 said:

Swimming laps
Do you swim laps. All of a sudden I've gotten a sore shoulder (feels like in the tendon) of my lymphedema arm. I'm not sure how to handle this. Ever happen to you?

Yes, I swim laps...
You should have seen me the first time I started to swim...back in October, I think. I wore a floation device around my waist and flippers on my feet (both things are available to swimmers at the pool where I swim). I've never been a good swimmer, 'cause I'm a sinker. So, I started out swimming very easy. My main goal was to do range of motion for my shoulder. At first, I held onto a kickboard and just tried to let my arm stretch as much as it could (always keeping my thumb pointed up). Then I progressed to doing freestyle, backstroke and breast stroke......all of these while wearing the floating around my middle. I wasn't working on speed, just range of motion for my shoulder....and trying to figure out how to breathe.

I just got home from swimming and I did the best I've ever done....in my WHOLE life. I'm still not swimming fast, though I am a bit quicker than when I started. I was able to do about 7 laps of freestyle with the floaty and flippers, 6 laps of freestyle without the floaty, and 2 laps each of backstroke and breaststroke. Up until now I've had to take frequent rest breaks. Tonight I didn't have to stop at all!!! Whew-hoo!!!

If your shoulder's sore, it could be from a few things.....either wrong technique, trying to swim too fast (your shoulder might not be ready for that), or maybe overworking it and swimming too much. You mentioned that you were working with a PT, maybe you could have her check it out for you.

Yes, my shoulder gets sore, but it's a good kind of sore...not a bad kind of sore. But that has improved since the first time I swam. I do take ibuprofen either before, or after, or sometimes both, to help with the soreness. And when I first started swimming I iced my chest wall and axilla area afterward. (One benefit of being numb is that the cold is tolerable, though you want to be careful and keep an eye on your skin).

How long have you been swimming Lynn? Are you using any thing (floatie, flippers, kickboard)?

lynn1950

Chellebug said:

Yes, I swim laps...
You should have seen me the first time I started to swim...back in October, I think. I wore a floation device around my waist and flippers on my feet (both things are available to swimmers at the pool where I swim). I've never been a good swimmer, 'cause I'm a sinker. So, I started out swimming very easy. My main goal was to do range of motion for my shoulder. At first, I held onto a kickboard and just tried to let my arm stretch as much as it could (always keeping my thumb pointed up). Then I progressed to doing freestyle, backstroke and breast stroke......all of these while wearing the floating around my middle. I wasn't working on speed, just range of motion for my shoulder....and trying to figure out how to breathe.

I just got home from swimming and I did the best I've ever done....in my WHOLE life. I'm still not swimming fast, though I am a bit quicker than when I started. I was able to do about 7 laps of freestyle with the floaty and flippers, 6 laps of freestyle without the floaty, and 2 laps each of backstroke and breaststroke. Up until now I've had to take frequent rest breaks. Tonight I didn't have to stop at all!!! Whew-hoo!!!

If your shoulder's sore, it could be from a few things.....either wrong technique, trying to swim too fast (your shoulder might not be ready for that), or maybe overworking it and swimming too much. You mentioned that you were working with a PT, maybe you could have her check it out for you.

Yes, my shoulder gets sore, but it's a good kind of sore...not a bad kind of sore. But that has improved since the first time I swam. I do take ibuprofen either before, or after, or sometimes both, to help with the soreness. And when I first started swimming I iced my chest wall and axilla area afterward. (One benefit of being numb is that the cold is tolerable, though you want to be careful and keep an eye on your skin).

How long have you been swimming Lynn? Are you using any thing (floatie, flippers, kickboard)?

Swimming
I am a sinker, too. I have been swimming laps for years. For a long time I would swim a mile each time. I got out of practice while I was in chemo, but during radiation I was able to swim in a short pool at an Elks hospital near where I was staying. I didn't know how many laps made a mile, so I just swam for 40 minutes to an hour about 3 times a week.

When I was finished with radiation, I came back home and didn't swim for about a month, but started back in a few weeks ago...about twice a week. I use a kickboard, but not flippers because they always give me blisters. 33 laps is a mile. I started out slow and had built up to 27 laps when my shoulder thing started. I think I overdid it. The shoulder on my other side is fine (good sore), but it feels like the tendons in my left shoulder may be in trouble. I am so bummed, because now when I go to the pool I just stretch my arms with my kickboard and kick.

My PT is at the Elks Hospital which is 2 hours from my home. I stayed down in the city while I was having rads and just came home on the weekends.

Chellebug

lynn1950 said:

Swimming
I am a sinker, too. I have been swimming laps for years. For a long time I would swim a mile each time. I got out of practice while I was in chemo, but during radiation I was able to swim in a short pool at an Elks hospital near where I was staying. I didn't know how many laps made a mile, so I just swam for 40 minutes to an hour about 3 times a week.

When I was finished with radiation, I came back home and didn't swim for about a month, but started back in a few weeks ago...about twice a week. I use a kickboard, but not flippers because they always give me blisters. 33 laps is a mile. I started out slow and had built up to 27 laps when my shoulder thing started. I think I overdid it. The shoulder on my other side is fine (good sore), but it feels like the tendons in my left shoulder may be in trouble. I am so bummed, because now when I go to the pool I just stretch my arms with my kickboard and kick.

My PT is at the Elks Hospital which is 2 hours from my home. I stayed down in the city while I was having rads and just came home on the weekends.

Wow!
You certainly know how to swim, Lynn...sinker or not! Technique is definitely not your concern. You probably did just overdue it.

Just take it easy and keep moving that arm. You know, I finished radiation the first week of August, but I didn't really feel the tightness/pain until October. My PT said that scar tissue can continue to form for up to 3-8 months after radiation. I continue to see her once every 3-4 weeks to work out the new kinks. Any chance you could make it over to your PT once a month? I have to drive about 45-50 minutes to see my PT.

Thinking of you today. Hope your appointment went well!
Chelle

Skybuf

Dear Lynn
I have lymphedema in my left arm. I used to get manual lymph drainage, but here in Canada it's not paid for and very expensive and needed at least once weekly, so my friend helps with doing it and I do what I can myself. Unfortunately I can't reach behind my back and down the spine to get it flowing. I had a bilateral mastectomy, first surgery was a mass, stage III and had 19 lymph nodes removed, 17 were cancer, since I don't have any lymph nodes under the arm the lymphedema, I wished they had warned me about it!!!!!!
I do watch what I lift and avoid cuts at all cost. I don't put my arm in hot water or go in hot tubs now I sure miss them. I try to swim but it's far away also. I live in a small village in Canada, cottage country. I wear a sleeve daily and take it off at night. The arm fills up at the top/shoulder even with the sleeve and I need to rub it out. It's different, but at least I'm here.....hope you have good success with yours....God bless

lynn1950

Skybuf said:

Dear Lynn
I have lymphedema in my left arm. I used to get manual lymph drainage, but here in Canada it's not paid for and very expensive and needed at least once weekly, so my friend helps with doing it and I do what I can myself. Unfortunately I can't reach behind my back and down the spine to get it flowing. I had a bilateral mastectomy, first surgery was a mass, stage III and had 19 lymph nodes removed, 17 were cancer, since I don't have any lymph nodes under the arm the lymphedema, I wished they had warned me about it!!!!!!
I do watch what I lift and avoid cuts at all cost. I don't put my arm in hot water or go in hot tubs now I sure miss them. I try to swim but it's far away also. I live in a small village in Canada, cottage country. I wear a sleeve daily and take it off at night. The arm fills up at the top/shoulder even with the sleeve and I need to rub it out. It's different, but at least I'm here.....hope you have good success with yours....God bless

thanks Skybuf. I thought the manual lymph drainage was the pumping towards the heart and then motion like rubbing on lotion. I do it myself. For the back part, I use a wall. At this point my lymphedema is very mild. I just don't want it to get worse. My onc is so nonchalant about it; it was my radiation onc who sent me to a lymphedema specialist...she showed me exercises and how to do the massage and encouraged me to wear a sleeve. I didn't take her advice at first, but reading posts here convinced me that wearing my sleeve is a good idea.

Our BC sounds similar. I also had a bilateral mastectomy (In April, '08); the right side is prophylactic with no lymph nodes removed, so it is fine. I had 17 nodes removed and either 6 or 7 were cancerous - the path report is unclear. I had mostly lobular with some ductal elements and my tumor was 2.2 cm. My cancer is an aggressive kind so I take arimidex now, having completed dose dense chemo and 7 weeks of radiation.

I am so grateful for this site. I was just scrolling back and reading old messages and learned that there is a discussion board protocol. I am so unaware, so I never followed it. It said we introduce ourselves. I have never done that, so I hope I haven't offended anyone. I read some posts from the week before Christmas that I had never read before. They were so beautiful! I don't read all the posts, because sometimes they are about reconstruction, which I don't think I'm going to do. I read many posts and responses, but stay silent, because I don't know the answer, or someone has already answered eloquently.

Since I live in a rural area too - this place has become my virtual support group.

mmontero38

lynn1950 said:

thanks Skybuf. I thought the manual lymph drainage was the pumping towards the heart and then motion like rubbing on lotion. I do it myself. For the back part, I use a wall. At this point my lymphedema is very mild. I just don't want it to get worse. My onc is so nonchalant about it; it was my radiation onc who sent me to a lymphedema specialist...she showed me exercises and how to do the massage and encouraged me to wear a sleeve. I didn't take her advice at first, but reading posts here convinced me that wearing my sleeve is a good idea.

Our BC sounds similar. I also had a bilateral mastectomy (In April, '08); the right side is prophylactic with no lymph nodes removed, so it is fine. I had 17 nodes removed and either 6 or 7 were cancerous - the path report is unclear. I had mostly lobular with some ductal elements and my tumor was 2.2 cm. My cancer is an aggressive kind so I take arimidex now, having completed dose dense chemo and 7 weeks of radiation.

I am so grateful for this site. I was just scrolling back and reading old messages and learned that there is a discussion board protocol. I am so unaware, so I never followed it. It said we introduce ourselves. I have never done that, so I hope I haven't offended anyone. I read some posts from the week before Christmas that I had never read before. They were so beautiful! I don't read all the posts, because sometimes they are about reconstruction, which I don't think I'm going to do. I read many posts and responses, but stay silent, because I don't know the answer, or someone has already answered eloquently.

Since I live in a rural area too - this place has become my virtual support group.

Welcome Lynn to our site. I
Welcome Lynn to our site. I am so glad you are finding us supportive. We really need to connect to others that are in our same situation. It seems that we are the only ones that understand exactly what we are going through. Our loved ones try but don't really get it. You should join us in the chat room. You will get to meet many people of different walks of life who are very supportive also. I also don't answer every post because there are times that others have answered much more eloquently then I ever could. I wish you much peace and health in the new year, Hugs, Lili

lynn1950

Thanks for the welcome...re chatroom
I do go to the chatroom, but wow! So many new names. I have a hard time keeping everyone straight. I was on last night and there were so much crisscross chat that I didn't know how to react. One woman's husband is dying, other people are coming and going and saying hi. It mixed me up emotionally.

lynn1950

Sometimes things post twice
this posted twice so I edited it. I don't know what happened.

mmontero38

lynn1950 said:

Thanks for the welcome...re chatroom
I do go to the chatroom, but wow! So many new names. I have a hard time keeping everyone straight. I was on last night and there were so much crisscross chat that I didn't know how to react. One woman's husband is dying, other people are coming and going and saying hi. It mixed me up emotionally.

It does get a little
It does get a little overwhelming when there are many people on at once. You will get use to it. Keep stopping by. Hugs, Lili

Jan_M

Skybuf said:

Dear Lynn
I have lymphedema in my left arm. I used to get manual lymph drainage, but here in Canada it's not paid for and very expensive and needed at least once weekly, so my friend helps with doing it and I do what I can myself. Unfortunately I can't reach behind my back and down the spine to get it flowing. I had a bilateral mastectomy, first surgery was a mass, stage III and had 19 lymph nodes removed, 17 were cancer, since I don't have any lymph nodes under the arm the lymphedema, I wished they had warned me about it!!!!!!
I do watch what I lift and avoid cuts at all cost. I don't put my arm in hot water or go in hot tubs now I sure miss them. I try to swim but it's far away also. I live in a small village in Canada, cottage country. I wear a sleeve daily and take it off at night. The arm fills up at the top/shoulder even with the sleeve and I need to rub it out. It's different, but at least I'm here.....hope you have good success with yours....God bless

Lymphedema
I had a lumpectomy and 5 nodes removed in Nov. 08, and NO one told me about lymphedema. Sunday my arm and neck swelled up. I could not move my neck and under my arm was sore. I went to the Dr. and he said he has seen worse, and gave me antibotics. No explaining what is was or that it is premenant. And definitely didn't explain sleeves or how to care for it. So far antibotics have not helped. This board has given me more info then anything.

Chellebug

Jan_M said:

Lymphedema
I had a lumpectomy and 5 nodes removed in Nov. 08, and NO one told me about lymphedema. Sunday my arm and neck swelled up. I could not move my neck and under my arm was sore. I went to the Dr. and he said he has seen worse, and gave me antibotics. No explaining what is was or that it is premenant. And definitely didn't explain sleeves or how to care for it. So far antibotics have not helped. This board has given me more info then anything.

Did he say it was lymphedema?
I had a sentinel node dissection on my left side (4 nodes removed) and have not had any lymphadema issues with that side. It is possible that you are not experiencing lymphadema, but possibly something else.

There could be a seroma (pocket of fluid build up)...those can be quite painful and certainly cause swelling to the area. I developed one in my armpit after my initial lumpectomy on my left and it took months to go away.

It could be a blood clot. My friend developed that after her port was removed. She had swelling down her arm and in her neck, along with discoloration of her arm. She had to give herself daily injections to thin her blood. Eventually it resolved.

If you've not had any improvement with the antibiotics, you might want to check back with your doctor (surgeon, preferably).

The good news is that seromas, blood clots and lymphadema can be treated. The better news is that seromas and blood clots go away with proper treatment. Lymphadema, on the other hand, needs to be managed.

I hope you feel better soon and get the treatment you need.
Chelle

lynn1950

Jan_M said:

Lymphedema
I had a lumpectomy and 5 nodes removed in Nov. 08, and NO one told me about lymphedema. Sunday my arm and neck swelled up. I could not move my neck and under my arm was sore. I went to the Dr. and he said he has seen worse, and gave me antibotics. No explaining what is was or that it is premenant. And definitely didn't explain sleeves or how to care for it. So far antibotics have not helped. This board has given me more info then anything.

Welcome, Jan
So glad you decided to come to this site. There is a WEALTH of information and support. If you have nodes removed, then you are at risk. Call your doctor and find out the diagnosis. That can set your mind at ease. As a preventative, it's a good idea to see a lymphedema specialist - a physical therapist with special training. I am going for my six month checkup tomorrow! Lynn