How long for full shoulder ROM after ALND

knittingPT

Hi All!

I had a lumpectomy and axillary node dissection on April 17. I am able to lift my arm to about shoulder height and then get a very strong pulling sensation. I also cannot fully straighten my elbow. The surgeon wants me to go gentle until the end of this week and then I can start PT. How long did it take you to get to full range of motion in your arm after surgery? How about full strength? I was also surprised by the "cave" that is now my armpit. I wasn't expecting that. Does it go away with time or is that a keeper?

Oncearunneralwaysarunner

Hi knittingPT,

I found it took me about 2-3 months after surgery to get most of my range of motion back. That was with about 2 weeks of PT. My range of motion was very limited for about a month after surgery and then it seemed to just get better really quickly. It took me a while longer to get the strength back in my arm. The main reason why I say that I got most of my range of mention back is because I can't reach quite as far when I reach behind my back or try to reach something on a high self. These aren't things that bother me.

As for the "cave", I had a bit of a cave and a huge bump from a seroma. I found that took a lot longer to level out, I'd say close to a year after surgery. My arm pit on the surgery side is still a bit different than the other side but not really that noticible any more.

I hope this helps

Kicks

Before my UMX, I was told to be sure to have/get button up shirts as I would not be able to put on pull over shirts after - WRONG. My 'normal winter uniform'is a turtleneck under a sweatshirt so both are pull on. When I was getting dressed to leave the next morning after UMX, as it seemed that my ROM was good so I decided to try putting on the turtleneck and sweatshirt to see if I could. No problem at all so I walked out wearing what I normally wear. (Yes I did walk out on my own 2 feet though an RN had to walk with me for policy and be sure that I got in a vehicle that someone else was driving - my Son.). So, I never had much reduction in ROM and really do not remember when was back to 'before' as it just progressed but wasn't long at all. The same goes for strength. My LET guy is an OT and I have never seen/been to a PT for issues with my UMX. In fact, I have been referred to PT when I broke 2 bones in my foot 3 yrs ago and they were not allowed to even see me for my foot until they cleared it with my LET guy. But that was me and not all have the same experiences.

When seeing a PT (or OT) be sure they are a LtmphEdema Therapist - not one that claims to 'know all about LE' but has no credentials. As you had nodes removed, you should see a LET for a baseline evaluation/measurements and education BEFORE issues developed (if they do). Unfortunately, many Drs who deal with BC are not well educated in what LE is and how many are effected by it - I was one of the lucky ones in that my surgeon and Chemo Dr were both very knowledgeable but most are not.

knittingPT

Just wanted to report back. I am 2 weeks, 3 days out from surgery and can lift my arm to just a couple inches above shoulder level, get my hand to my mouth, reach back behind to pull up my pants (but not reach high enough to scratch that ONE spot on my back). I can't quite get my elbow straight when I'm reaching up but can do so when it is at my side. I no longer have pain except when I'm stretching at the end of my range of motion. I am happy with progress so far. I still have some mild swelling in my breast and around under to my armpit and some weird sensations on the back/underside of my arm but they aren't too bad. It's a weird numby feeling. Thanks for sharing your experiences with me. I will, hopefully, get referral for PT soon. Surgeon wanted me to wait until end of this week (but I'm a PT so started stretching on my own . . . I don't know anything about lymphedema but I do know regular rehab!)

Kicks

knittingPT - As a PT you might want to look into schools to become an LymphEdema Therapist in addition. My LET guy is an OT.

knittingPT

Nope! I work in pediatrics. A lot of my time is spent in the neonatal intensive care with premature infants. I don't see much lymphedema there! I don't really have any interest in shifting my career focus to lymphedema at this time.

linzer

Hi Knitting,

Initially I did find limited ROM, but I went to a PT right away and started exercises within a week or so of surgery. I did them faithfully every day, two times per day. My advice is to keep stretching as much as you can bear without it being painful. Just at the "sweet spot" so to speak. The biggest issue for me was that I developed one cord down my arm to my elbow. It made things difficult. With myfascial release and massage, the cord diminished dramatically over four month's time. Then I had whole breast (but not axillary) radiation. That brought back the cording and some milder ROM issues. Back to PT for 8 weeks, and the cord magically worked its way down my arm and out of my hand. Gone! I'm 8 months post surgery, 5 months post radiation and I feel as close to normal as I think I will be. The only residual issue is some prevailing numbing under my armpit and my back - but it is greatly diminished from what it was like months ago. Good luck!

Kicks

knittingPT - Wouldn't think you'd run into much LE in pediatric PT especially in Neonatal Unit. I never thought about a PT being exclusively with pediatrics but it makes sense to me for PTs to be specialized for young ones.. It must be very rewarding to work with them.

HMMM - just had a thought - as LE can developed after any surgery or traumatic injury to any part of the body - do 'kids' not sometimes developed LE?

Jennie93

knitting, it sounds like you might have cording. Check out this article and see what you think.

http://www.stepup-speakout.org/Cording_and_Axillar...

I got cording a few weeks after surgery but no one would diagnose or acknowledge it. I found out about it by researching it myself. The BS had told me to do the "fingers crawling up the wall" exercise, nothing else, and then after the two-week post-surgery checkup he said to go back to my normal life, do whatever I want, let pain be my guide - if something hurts, don't do it.

As it turns out, that was not the best advice.

For the next 6 months, the only doc I saw was the MO, and she was not interested in hearing anything about my physical condition or pain, had no interest in looking at my armpit or referring me to anyone else. I sort of did the exercises, but by stopping as soon as it hurt, there was never any progress. Once chemo was done, I was handed off to the RO, and discovered at the first visit that I could not get my arm up over my head where they needed it to be. This doc was right on the ball, though. He gave me a booklet with lots of exercises and sent me home with instructions to do them all twice a day for two weeks, and don't stop when you feel the pain - push just a little bit more. It shouldn't be excruciating or anything, just push a tad more than you want to. And also he referred me to a LE specialist to get baseline measurements and advice on prevention. Both of those things should have been done right after surgery!

I did that, and got better enough to get through rads, but then shortly afterward the cording & pain & tightness flared up again. The RO was great, again, and got me on some meds to temporarily help relax things, and referred me to PT, which I did for about 6 months and eventually got almost all my range of motion back.

Moral of the story, be assertive if you have to, and get that PT sooner rather than later.

florida2015

could it be because of medications ? I didn't have any issues after lumpectomy done in March

knittingPT

Linzer, thanks for your timeline! That really helps.

Kicks, I LOVE working with kids and their families. You are right that kids can get lymphedema too. However, I don't work with very many kids with cancer so I just haven't seen it (I would refer them to a cancer specialist if I suspected lymphedema!). Also, I think a lot of the primary kid cancers like leukemia (or brain cancers) are treated primarily with chemotherapy and bone marrow transplants so they don't often have the lymph nodes removed.

Jennie, I am not sure if it is cording or muscle tightness just from the location of the incision. I saw the radiation oncologist yesterday and she has no problems referring me to PT but wants me to heal up just a little bit more before I go. She said that the LE clinic here wants us to wait a little bit before going? (I don't know if that is true or not!) I am doing all kinds of shoulder/elbow range of motion exercises so I hope that will be enough to get me going. I still have a lot of swelling so I don't want to get too aggressive until the inflammation has calmed down a little bit. I definitely push a little past the "comfort zone" and have already made a lot of progress. I can get my arm higher than my shoulder but definitely don't have full range yet. I probably do the exercises 4-5x/day (mostly out of boredom and inability to sit still!).

Florida, I am sure this is from the surgery. But, I think it is the axillary node dissection causing the problems (there is a big incision basically across my arm pit so when I lift my arm it pulls). The breast part doesn't seem to be causing me any problems at all since the incision isn't really near any muscles.