Breast Lymphedema

It's only been a few weeks since surgery so I shouldn't be that worried...however, I am very concern. After reading more on lymphedema (breast), I see the symptoms of breast lymphedema.  My breast was reduced in size to match my right breast (which had already two lumpectomies) and it's now a lot larger than it was before and the right breast. After surgery the breast were the same size. I hope it will resolve itself in a few weeks.

So...I'm reading more on this in how to prevent lymphedema. I've been wondering how much I can exercise or how active I can be...now, and in the future. This is something I found that might help others who have the same question.

Try to avoid muscle strain.

It's important to use your affected arm for normal everyday activities to help you to heal properly and regain strength. This includes doing things like brushing your hair and bathing. Using your muscles also helps drain lymph fluid from the limbs. If you've had surgery or radiation treatment, ask your doctor or nurse when you can start to exercise and what type of exercises you can do. But keep in mind that overuse, which can result in injury, has been linked with the start of lymphedema in some women. It's a good idea to follow these tips:

• Use your affected arm as normally as you can. Once you are fully healed, about 4 to 6 weeks after surgery or radiation treatment, you can begin to go back to the activities you did before your surgery.
• Exercise regularly but try not to over-tire your shoulder and arm. Before doing any strenuous exercise, such as lifting weights or playing tennis
• If your arm starts to ache, lie down and raise it above the level of your heart.
• Avoid vigorous, repeated activities, heavy lifting, or pulling.
• Use your unaffected arm or both arms as much as possible to carry heavy packages, groceries, handbags, or children.

Try to avoid muscle strain.

http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/Lymphedema/WhatEveryWomanwithBreastCancerShouldKnow/lymphedema-with-breast-cancer-to-prevent-lymphedema

sas, I'm so glad you've found the information here affirming. We can all use as much affirmation as we can get, and it's so great not to feel all alone with this! I'm so very sorry for the loss of your husband, and truly moved by your courage in moving forward. Brava!

It's really not right that we're all left to our own instincts when dealing with lymphedema, but how wonderful that your instincts were all in the right direction! I hope your therapist has proved to be both well-trained and supportive. Good ones are such treasures! Here's a page to share with your doctors, so hopefully the women coming along behind you won't have the same problems with finding help:

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

I sure hope you have no further problems. Have you talked to your therapist about being fitted for compression sleeves and gloves to use prophylactically? Subclinical lymphedema (also called Stage 0) can be treated with the use of garments as needed (for exercise, travel, or any time your arm feels heavy or "funny"). Recent studies show that it can be kept at that stage indefinitely with this kind of intervention. (There can be as much as 30% more fluid in the tissues than is normal before any swelling is visible or measurable.) The fact that your arms swelled earlier is another indication of subclinical involvement, so having well-fitting garments available to use as needed can prevent progression.

Keep us posted, please! And please tell us how we can help.

Hugs,
Binney

Binney- thanks for your response I miss my Greg --we were joined at the hip for 38 years. he was a good , kind and gentle man--

I was fitted for a sleeve---within three hours it caused nerve damage-----off it came.  iT WAS FITTED BY A CERTIFIED PERSON.. But the nerve damage persists after 7 months.The ulnar nerve was affected. I should have taken it off maybe an hour earlier or so. I figuired I was being too OCD.  Then decided no,  what I was perceiving was it was causing a problem,  vs relieving a problem.

The Le therapist on first contact measured my arms. The left which had the problem measured less than right---but I am right dominant. Every month--7 ---the symptoms have gotten less. But I am very careful about using the arm. I recently started a swimming program . The swelling feeling in the axilla , pectoral and upper arms feels better.  MUCH better. I do the backstroke alternated with a modified breaststroke and a frog something. All are aerobic strokes. The use of the Wonder bra is like an alarm clock--I need it on at certain times. After the catch it seemed like foobs kept falling into my armpits. It doesn't seem that I remember it happening before that. Does that sound weird? I was so concentrated on Greg I don't remember it being a problem before the catch. He was 325 lbs. I know I shouldn't of done it, but I was not going to have him suffer the indignity of calling a squad to lift him back into bed even if he already had died.    

The therapist could not say that there was any fluid , but i never received a written copy of her report. It was not available at last office visiit. I will get a copy and then have a better report for you. I've lost approximately 53-56 lbs. 23 with my BC and the rest with Gregs lymphoma. So the upper arm has sagging flab. Sounds awful, but doesn't look as bad as that. I've seen worse. Based on my description of swelling on and off and vein distention the day of evaluation on both upper arms which was unusual, I was surprised she didn't say something because I told her it was unusual and actually caught me off guard , but????

Positive -----I feel much better with the swimming

Based on what you have written I have to get the Therapist report before I can make any other  request of you.  Thanks Binney  Namaste! sheila

Kira - thanks for explaining all that to me! He did say the swelling would probably go down after a while, but then I started thinking about the possible damage a mammogram could do. I need to check with my cancer center and see if they offer some classes on preventative LE exercises. I know LE can appear years later, and I feel like I have a few spots that bug me, so I'm going to get a professional to show me what to do.

Like my mother says, "If it's not one thing, it's your mother!" 

Kira,

Thanks so much for the info.  I just found out I have mild LE  in my right arm on Tuesday.  I am unsure of the PT I was referred to.  The exercises he gave me are the exact ones you posted by Joe Zuther. That makes me feel better.  Again thanks.

Becky 

Sheila, you should ABSOLUTELY have done what you did to assure your dear husband's dignity -- and your own. Lymphedema takes a back seat to love expressed in such a way.

Swimming is wonderful exercise for lymphedema -- the best! And weight loss also affects lymphedema positively (really sorry about the reasons for the loss, though!) So, all very hopeful in terms of not having further problems. Wouldn't THAT be nice!

Let us know what you discover! Hugs,
Binney

Kira - thanks for those great links! They are exactly what I've been looking for. I finished chemo and rads at the end of December and have been floundering around with my attempts at exercise, i.e. butterfly exercise with weights. It didn't seem like a good place to start so I stopped them. 

Sorry ladies for struggling with all this. I know, what you are going through is far worse than the fear of lymphedema. I' so wanted breast cancer to be over after the surgery. I'm a little bummed. At times, I am fine, and others I am just mad at myself for saying yes to allowing the surgeon to take the nodes out the day of the surgery. I am sure this seems ridiculous in light of the hard choices you have had to make.

Today, I saw the pt. She is an oncologist pt...works mostly with breast cancer women. She said the webbing or cording will take time before it goes away. And, I should not do strength exercises until the webbing is gone.  The breast is really swollen. She said I need to go back to the surgeon to remove what she feels is a large seroma. She said seroma is different than lymphedema. I hope so. She also thought the pain on the left side is roping. I spent 90 minutes with the pt. I have about five exercises or stretches I need to do about three times a day. She read over my whole medical history, measured my arms...and read my breast cancer history. I learned that the surgeon took out four nodes...not two. I wanted to cry. She said it would take about 8 appointments in pysical therapy and from there she would see if I needed more. She said you can't prevent lymphdema ... maybe reduce your risk???

I've been doing the stretching exercises the pt gave me and the cords hurt. It didn't seem too bad when stretching. Should I cut back? Also, my husband and daughter very gently massage the under arm cording...almost too painful to touch. Should this only be done by the pt? What about swimming?

Kira...The cording seems to be worse. It is so pronounced. The sentinal node scar area is very sore and tender...swelling a little. I noticed that there is roping running from the arm pit into the breast. I'm a mess  

I found that after exercising or the gentle stretches, the cording area burns. A few times, I've woken up at night and my whole arm just hurt. The breast is a little softer, except the surgical area is still hard as a rock...very large surgical area because the surgeon said she reduced the breast to match the right...although its much larger than the right breast due to swelling.

So...I'm waiting for life to return to normal. I'm going to work, and trying to ignore the problem. It's hard when I can carry my bags (briefcase with laptop) or anything else. I'm also dealing with a yeast cleanse right now that's very hard on me. I feel like my body is a war zone.

Yesterday, I had my second appointment with my pt. She gave me a book on managing lymphedema. I read a lot of it. Very imformative. I learned that not enough exercise can put you at risk for lymphedema, or too much, especially early on. I've been so overly protective of my left arm that I now know that I need to do more. I read in the book that the lack of swelling initially does not mean you do not have lymphedema.

 She worked mostly on lymph drainage, and teaching me the techniques. I learned a lot! She said with therapy it was rare when she saw women with elephant arms. She also said that I needed to wear gloves while working outside in the garden. The pt said, I could get in the pool to move my arms about, but not seriously swim....not yet. No weights yet. She wasn't sure about the rebounder. She said it seems to help a little, but the lymph draining techniques which re directs our lymph fluid toward another lymph node system is what we really want to do. Since both arms have had sentinal node lympth removal all my efforts must be pushed downward toward the lower part of my body.

For breast swelling, I've been wearing tight sport bra's. It seems to be helping. My breast is a little softer,,,except it's still like a rock in a few areas. She said after the lymph draining techniques to then put on the sports bra. Oh...I also learned that belly breathing is helpful to the lymph system.

I'm encouraged that hopefully with early intervention, I will hopefully won't get lymphedema. Although, I am very aware we are always at risk.

Kira...never sure where to post on the lymphedema thread...especially since I'm not dx with it...hopefully never....but feel that I'm at high risk for it. I have been careful not to overuse my left arm. This morning I woke up with my left arm feeling like its on fire. Two hours later it feels the same way. I don't think there is swelling. Is this normal for cording? Or is it a sign of stress from massaging? Or is it early lymphedema? I don't see the therapist until Wednesday. Am I being too aggressive with massaging the cords?

Although...my oncologist physical therapist is treating me like I have lymphedema. She is always checking the size of my arm and hands. Also the size of the breast as its still very swollen. I still have a very hard seroma. It is slightly smaller since wearing sport bras.

I wonder if I should even be on the lymphedema thread. I' came here mostly out of concern...now just lurk for encouragement or information especially in regard to prevention. I feel like someone on the outside looking in...not really wanting to come in. This whole thing makes me nervous.

Eve,  Who is the author of the book?  Becky

Evebarry--I think the book "Lymphedema" is a Jobst handout--it's kind of pamphlet, right?

You are always welcome on these threads, you are being treated to prevent lymphedema, and there is a kind of lymphedema--stage 0 where you don't swell, but have extra fluid in the tissues.

I sure wish I had gotten good help with my cording, and the great advice you're getting about the timing of the exercise.

The arm pain is worrisome. Watch for redness, warmth, fever--but it just might be those pesky cords. When in doubt, give the PT a call.

Your PT sounds great.

Kira

Here is a very good article--BeckySharp told me about it:

http://www.lymphoedema-uk.com/journal/0101_breasttrunk.pdf 

Kira--Thanks Becky!!