When do you start therapy?

SusanSmay

When do you start therapy?

SusanSmay

I will be having a bilateral mastectomy in two weeks, with immediate reconstruction, and removal of 2 - 3 lymph nodes on the left side. My breast surgeon recommended I see a rehabilitation therapist who specializes in lymphodema with regard to breast cancer/mastectomy. My question is, how soon do I need to do that? Is it necessary to start this soon after surgery as a means to prevent lymphodema or is it really not necessary to see a therapist until I develop lymphodema?

Part of me is being stubborn and would rather put this off until it becomes necessity and forego yet another appointment. I know my doctor is doing all of this to help me but at the same time I feel like I am being farmed out to all of her cancer specialist friends. So I could really use advice about going or not or a gentle rebuke to change in my attitude ;-)

Thanks! Susan

Morwenna

One benefit of seeing a lymphedema specialist early rather than later, if/when you have developed established lymphedema, is that you will at least have a baseline for comparison.

I do get the "I don't even wanna to go there" attitude, but it wouldn't hurt to have that baseline, even if (hopefully) you never need to go back!

BayouBabe

One appointment now could save you a lifetime of misery. You will get a baseline measurement, info on what to watch for, info on exercise, info on flying in the future, etc. As one who has dealt with mild lymphedema, I am so thankful I was proactive. There is no doubt in my mind, that my issues would be worse, had I not done this. Please make and keep the appointment

daisylover

Susan,

I firmly believe that all mastectomy patients should offered a PT specializing in breast cancer patients - I am 10 months out and just found a skilled therapist last month. She has helped me immensely with my over-all feeling of comfort and well-being. I feel like you are being given a gift which should be offered to all mastectomy patients! (I had to ask for prescription repeatedly...) You will appreciate this most a few months after BMX. I had tightness and swelling in my shoulder and side --- ALND side of body. I have no issue with Lymphedema in my arm, although my first PT ordered me a sleeve... My first PT did not do massage - just gave me exercises. The massage of my scar tissue by my current PT has been key in reducing the swelling and tightness and making me feel great. I don't believe that a diagnosis of Lymphedema is important. The key is to regain/maintain your shoulder mobility and healthy flow of lymph. I would see the therapist as often as your insurance covers - regaining full mobility and reducing swelling is such a positive feeling. If you like the therapist, it's a great boost both physically and mentally. I wish that I had found my current therapist sooner... You could do a baseline visit before surgery and assess whether you feel the PT would be helpful later -(It's very difficult to get in to see PT's specializing in Lymphedema around here.) then, you would be an existing patient if you came to the decision later that you needed therapy. Best wishes for a smooth recovery

Binney4

Susan, no need for a rebuke here, since we can all feel your frustration and angst from having your "social" calendar filled with medical appointments. But as you can see we definitely offer ENCOURAGEMENT to see a well-trained lymphedema therapist BEFORE surgery. S/he will take and record those important baseline measurements, give you personalized risk-reduction tips for before and after surgery, and lay the groundwork for an important and really helpful post-treatment relationship. Here's how to find a well-qualified lymphedema therapist near you:

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

Keep us posted, please, on what you discover. Wishing you smooth sailing through all your treatment. Gentle hugs,
Binney

SusanSmay

Thank you Ladies so much for your advice and encouragement! I made the appointment to go see the therapist ahead of my surgery.

One of the reasons I was being so stubborn was my frustration with the physical therapy center. They had made the initial phone call to me for an appointment, which I wasn't able to answer, and it has taken me three phone calls to finally get someone to make me an appointment. I have a feeling you can all relate to that one moment (or moments) during all of this that you just don't want to deal with "this", even if it is the smallest of things. My "this" happened to be the people at the physical therapy center ;-)

crystalphm

My breast surgeon set up 4 home-bound appointments with a licensed LE occupational therapist. I learned SO much from her, manual draining, exercises, even best sleeping positions.

But I sure do understand your frustration with the physical therapy center. That kind of stuff goes on here too. Just be sure your therapist has LE training! Wishing you the best!

tsoebbin

how do you feel right after your lymphedema PT appointments? Tired? Sore? Better?

I have my first one this Friday and want to take a road trip afterwards. I have no idea how I feel and wonder if I should change the appointment. What is your experience?

Jennie93

I did not feel any different.

tsoebbin

perfect! Thanks Jennie.