Upcoming ALND, need guidance, suggestions, etc

I had an ALND with my lumpectomy with 10 nodes removed. I didn't have any drains but looking back I probably should have. I ended up having some fluid buildup. But a quick visit to the BS and it was taken care of. The ALND site was more tender than the lumpectomy site. Expect numbness in the armpit area and along the back of your arm. Mine lasted a couple of months. Just annoying. My BS gave me some exercises to do and I believed they helped with regaining full range of motion. Some gals end up with LE but fortunately I did not (not yet anyway). All in all it was pretty easy. Good luck to you!

My experience was a little more difficult. I had 21 nodes removed In November and healing is still ongoing. I do have good range of motion, but I still have some numbness in my upper back and armpit and intermittent pain at the ALND incision site. No problems with the lumpetomy. No LE that I know of. Am seeing my BS in June and will then have a better idea about how "normal" my situation is. 

LE researchers have shown that you can reduce your LE risk after ALND if you wait at least seven days (some say 14 for added safety) before starting range of motion exercises. Keep that arm at or below shoulder level. The study showed that women who did these exercises (such as wall walking) right after surgery were 2.7 x more likely to develop LE within a year, than those who waited the week, but at the end of the first year, all had similar range of motion. So no penalty to wait, and it's a large risk reduction.  Another study showed definite LE reduction when you do work with a PT after surgery. In their case, they do not specify how many days after surgery, just after 'discharge from hospital' --so it's not clear from that study if they waited for the seven days or not, although it seems likely they might have, because the patients had to schedule PT after hospital discharge.  I need to run at the moment, but if you have a conversation with your surgeon about having an LE risk-reduction plan, and if there is any reluctance to agree to delay PT for a week or so, repost here and I'll look up the studies and drop in the links at another time.

Carol

Found an extra few minutes, so here are the studies:

delayed shoulder exercises reduce LE risk:  http://www.sciencedirect.com/science/article/pii/S0031940608001132

Benefits of early PT to reduce LE risk: http://www.ncbi.nlm.nih.gov/pubmed/20068255

On re-reading that second study, I recall now that their intervention also included providing the ALND patients with manual lymphatic drainage during the three-week 'early intervention' period. 

My bottom line from this:  If you're having nodes removed, wait 10 days for any range of motion exercises, and see if you can get a referral to an LE therapist who can perform manual lymphatic drainage several times during the first three weeks or so after surgery.  Couldn't hurt; might well reduce your LE risk.  Oh--and try to get baseline arm measures before your surgery, so if you DO start to show or feel LE symptoms, you'll have an easier time getting a definitive early diagnosis, which will facilitate prompt treatment and better treatment outcome.

I had 5 nodes removed in SNB, which was combined with my bmx/recon surgery.  Was assured I was very low risk for LE, and given no info, no arm precautions until I argued for them. Woke up with BP cuff on my SNB arm.  Got LE. Go figure.  Now, after the fact, I have researched to understand what happened, and I think it's criminal that we have to learn what not to do the hard way.  Best of luck and hats off to you for asking for input now, instead of later.

Carol

keongi - if you have a drain I will warn you that I personally found the removal of that drain to be somewhat ouchy!  I would pre-medicate and have someone drive you (so that you are not pre-medicated and driving!) and I wish someone had told me this beforehand.  I am not trying to scare you because the discomfort was short-lived - but it did smart.  I was not allowed to drive yet at that point - so my DD brought me, but I wish I had taken something. I have had a lot of surgery, seven in the last 17 months, and had a lot of drains - and I did not take much in the way of pain meds after any of these surgeries, so I am not recommending this lightly.  I did experience the usual pain and numbness in the axilla, the inner bicep and shoulder blade, etc.  I have had excellent resolution of this, but it did take a full year.  I echo the need for caution in movement in the short term, and definitely endorse a consult with a LE certified PT who can help with range of motion, cording, gently stretching, and LE risk management.

Keonghi...may I ask why you are having ALND when your original pathology shows 0/2 nodes, stage 1a?   I always understood that if there was no cancer found in the sentinal nodes there would be no need for further dissection? 

I had 0/3 nodes and was not aware of the no exercise for the first 7-14 days

Yes, it now makes sense...I would still ask the surgeon why three levels...can they not check the first level and then if cancer is found they could then move to the next level. Hopefully someone with more knowledge will come along with better information as I am not too familiar with ALND...

Hi,

I noticed that the direct link to the John Stoddard Cancer.org  does not work.   Just google search "Axillary Lymph Node Surgery Education".  It comes on top of the list.  Click on the link and it opens in PDF format.

 All the best 

I had an ALND back on 2/29 after 2 sentinels were found to be positive.  I have done  well.  Had two drains in that axillary region and besides a seroma developing a few days after they removed one of the drains, I've had no complications. 

My range of motion is still not up to where it should be.  I have had no formal PT, but have been doing lots of stretching on my own.  May need to have formal evaluation here soon though.......I was a former softball player so my shoulder is unforgiving! 

The one thing that bothers me from time to time, is the weird, burning-type feeling I have in the back of my arm.....I was hoping that symptom would be gone by now, but it seems to be hanging around and occasionally, my skin (that lovely flabby area) will feel burny and prickly??

Good luck to you!

Keonghi, just know that many surgeons and physicians are not up to date on LE research and standard of care. I recently viewed a current continuing ed course for PTs, designed to give them knowledge about PT for breast cancer patients. To my astonishment, it advises PTs that day-after-surgery wall walking and other range of motion exercises are standard for BC patients. So, it seems the docs are ordering these immediate exercises, and the PTs are including them in their post-surgical therapy. But as you read, delaying by a week to ten days can really lower your LE risk, with no long-term reduction in arm/shoulder mobility.

Did I insert a link to the study abstract earlier?  Here it is, should you need to pass a copy to your surgeon: http://www.sciencedirect.com/science/article/pii/S0031940608001132

Best of luck on the surgery, keonghi. 

And mardibra, lucky you if your numbness has resolved; the back of my arm is numb nearly a year after surgery. Keep in mind that LE risk continues for quite some time after AND. 80%-90% of cases appear within the first three years, but we have a small lifetime risk thereafter. So--stay vigilent and head to a qualified LE therapist for evaluation if you sense any of the classic symptoms (heavy arm, ache in arm, tingling feeling, jewelry on hand/arm too tight with no logical explanation, bra strap/band leaves impression on one side and not the other). Some 40% of us will get LE after BC treatment, and I sincerely hope you get to stay in the 60% club!

Carol