Just call me Paranoid!!

Firelady

Ever since I began my recovery from BC, my upper body use has been very limited.  Why?  I'm scared to death to get LE.  I mean, I function, but I don't lift/carry heavy objects, I vacuum and do light housekeeping, but nothing very strenuous.  Now fast forward...We had about 8 pine trees cut in our yard and there is quite a bit of brush that needs to be raked up.  Went out there this morning and started raking.  All I could think of is the pulling motion of the rake would cause me to get LE.  I raked four piles of brush then quit because I was afraid it was too much.  Am I being silly?  I don't want to be old before my time, but I also don't want LE.

Also, I've been doing cardio at the gym and have toyed with the idea of signing up for personal training sessions.  Again, I'm scared to death that doing the core exercises (on the floor/weight bearing) and training with upper body weights may cause LE. Any in-house experts out there?  I've already checked and we do not have any LE trainers in this area, so I'll be working with a very qualified and certified personal trainer, but not sure yet about his knowledge of LE.

Tired-Lady

OMG GA GA I am right there with you. I have ha issues with cording but not really the sweeling and I live in fear of it.   I want to exercise and get active again but do not want to overdo it.  they scare us by saying it can come on anytime.  Surgery was in jNovember and I am worried how the hot summer will affect me. I have not gone back to work yet (next month), waiting to finish chemo (this week). When I am on my feet most of the day is when I feel it the most.  I just hope when I am 4 years out like you that is my only worry as well.

carol57

dlt10960, Your certified personal trainer can ask for a copy of the PAL Protocol.  The Univ of Pennsylvania does not give it out to us mere mortals, but they will give it to a qualified trainer.  Here's the link to fill out the form to ask for it:  http://www.penncancer.org/physical-activity-and-lymphedema/receive-pal-intervention-materials/

The PAL Protocol is a very detailed explanation of the exercises used during the PAL trial, and your trainer will know just how to interpret the information in the document.  As a general description, for upper body work, the idea is to start with very low weight (1 lb..feels silly but that's the research-based way to minimize LE risk), add in very small increments, gradually, lifting 2x per week.  If you miss more than a session, back off the weight to the prior increment.

Avoid body-weight exercises that have you bearing weight on the upper body (i.e. push up, plank), because it's not feasible to know how much weight you are bearing, nor to build in small, measured increments.  Bodyweight exercises are possible after you have built up through the slow weight progression over time. 

If you have an LE diagnosis: wear a sleeve and gauntlet or glove.  If you do not have an LE diagnosis: it's a judgment call. Any tingly feeling, or heavy feeling in your affected arm?  If so, try to see an LE therapist now for an evaluation, because you may have subclinical (net yet visible) LE, and in that case, were it me, I would be wearing the sleeve/gauntlet when lifting weights. 

(And if you have the tingly/heavy feeling, get that eval even if you're not going to lift weights, because research suggests that if you treat it while it's subclinical, you may be able to reverse it.)

Your instinct to start working with a trainer to lift weights is spot on.  Think about this: if we can condition our arms/trunk to lift heavier weights, the fact of lifting heavier weight will be less likely to get the lymphatic system all excited and trigger LE. The trick is to avoid triggering LE while you lift gym weights to build up your ability to lift daily-life weights--hence the slow (annoyingly slow) pace of adding weights to your program.

For lower body:  Have at it, except of course, watch for lifts that also require help from the upper body, like dead lifts and weighted squats.  The PAL Protocol helps your trainer interpret this.

I don't think you're being silly at all, and activity like raking is highly repetitive against resistance, so I think you do want to stop and rest pretty often.  I hope someone else will drop in here and suggest strategies for doing that kind of work while taking some LE precautions.

Good luck with all of the above!  I have LE in my upper arm and on the side of my trunk, and I am now about 8 weeks into weight training, following the PAL Protocol, with a certified trainer.  The weights I'm lifting are humorously light compared to before my bmx last summer. But I also take great pleasure in reporting that I can tell I'm regaining my prior strength, and so far (knock on wood), I have not had a single experience of my LE flaring during or after a training session.  (Wish I could say that about flying, sigh. I need a research-based FLY protocol!)  I wear a men's short-sleeved Under Armour compression shirt to support my LE side, in addition to wearing the sleeve and gauntlet while training.

Carol

Firelady

Carol, this is EXACTLY what I was asking for!  Thank you so much!  I'll print this out and pass it on.  I wish you the best in recovery!

carol57

dlt, you are quite welcome. Let us know how this works out for you.  Sometimes the UPenn folks are a bit slow responding to the online requests by trainers. They don't have any staff assigned to this, and I understand they hear from lots of people about the PAL program, so requests get backed up sometime.  If it's too slow, send me a PM and I can get you an email address that your trainer can use to reach one of the researchers.

Carol 

kira66715

Carol: this is a brilliant post. I wish we could pin it to the top of the thread.

Suzybelle

Ditto, Carol - good stuff!  I have noticed in yoga that as long as I don't do the plank and down dog stuff that puts all the weight on my arms, I do fine with LE.  My yoga instructor has come up with a series of alternative poses that I do when the rest of the class is doing the upper-body weight bearing exercises.

I will add this:  Life is too short for me to spend it being scared.  This is coming from someone who already has LE in one arm and had a bmx.  I cannot spend the rest of my life being so scared that I don't do the stuff that I really want to do. 

I don't want a recurrence of cancer, I don't want LE in my left arm but I'll be d@mned if I'm going to spend the rest of my years being afraid. 

Good for you on signing up with the trainer!  Please keep us updated on how you do...I love to read about us getting through the diagnosis and surgery/treatment and moving on with living life.  It makes me happy. 

Suzanne

carol57

Suzanne, you have the perfect perspective on staring down fear. And your yoga instructor sounds like a real find.  I've never tried yoga and would probably have to do some searching to find a similarly accommodating instructor, but you've got me thinking.

I do seriously love working out with my trainer.  I went to him in a dazed state after scheduling my prophy bmx/diep, introducing myself as a woman in need of a miracle--get at least somewhat fit  in the eleven weeks I had 'til surgery, in an attempt to pave the way for an easier recovery.  He was up to the challenge, and a miracle I got.  

That experience -- 3 times per week for nearly three months --did so much to keep my sanity and emotions in check, quite aside from the fitness benefits.  The strategy worked as planned and recovery was actually pretty easy. The hardest part was waiting months for the PS green light to start lifting weights again.  I'm very lucky to live in a rural area where some things are less expensive than in the big cities, because my trainer does not charge much, so I can have the luxury of a very caring and motivating coach several times a week.

I truly wish I could give the gift of a personal trainer to every woman who has had to deal with BC and its aftermath. It has helped me so much, and my prophy journey was an easy one compared to most of the women here.

Keep up the fear-be-damned spirit: it's contagious, I hope!

Carol