Advice on benefits of physical therapy during TE phase

NJsurfer

I am about 6 weeks post bilateral mastectomy - cancer in right, prophylactic in left - and I am curious about the benefits of physical therapy at this time. My PS pretty much left it to me and said to do wall climbs. That was it. He did tell me what to avoid - engaging my pec muscles. I know this is mainly to make sure the aesthetics work out. For quite a while I was doing very little in the way of structured exercises, but after a few weeks I did find a great video online that Memorial Sloan put out. It's specifically meant for people who have had surgery and have TE's in. I have gained a lot of flexibility and range of motion from that. However, I still am experiencing a lot of tightness. I can generally make the movements I want to when I try, but I have to push through the feeling like I will fail first. I am a very active person and continue to be in very good physical shape which I know is helpful. So, what I am wondering is whether it would be beneficial to me to work with a Physical Therapist at this stage or if I should wait until my exchange is done on 1/25 or if you think PT is not necessary. Would love advice here. I was fortunate enough not to have chemo or radiation, so I do not have those complications at this time. Thank you!

Meadow

NJsurfer, sounds like you are doing great!. I did not have TEs, I had a one step procedure, implants at mastectomy. But I know what you say about being sent home with wall crawls, and that did a good job up to a point. While I was in chemo I fell in the snow and messed up my shoulder on my non cancer side...it was a mess. 9 months later both shoulders were concidered non functional. Then I started PT, and it was amazing. I did have 2 different therapists...one for my cancer side, she was a lymphedema specialist ,and a big guy who cranked around on my frozen shoulder from my fall. It really felt great, I benefited greatly, both shoulders are much much improved. If I had not fallen, I know I would still have sought out PT. I feel every BC patient who has had a mastectomy should have physical therapy, and with a lymphedema specialst if possible. (They are not in every area unfortunately) Even if you do not have LE at this time, you can learn techniques to stay AHEAD of lymphedema, so important. So, I did not really answer you, after all that talking! I think I would call your PT department and ask your question, about now or waiting. I am guessing they will have you wait...but you can do a lot on your own to keep range of motion. There is a Lymphedema forum here with some very knowledgeable ladies...pop in over there and ask, I know they will be very helpful. SO much info there. I am glad you are doing so well. Makes me happy! My best wishes to you.

mdg

I had PT all through my reconstruction. I think it made a huge difference. I think all women going through TE's and reconstruction should have PT.

NJsurfer

Thanks to all of you. I feel a little behind now! I'm jumping on it today. And I will have to research lymphedema. I thought I was in the clear on that at this time.

muska

I second what mdg said, you may not need a lot of sessions with PT but even two or three sessions can be very helpful as the PT will show the right exercises and give useful advice

katykids

I have two frozen shoulders. My PS said no exercises till 6 weeks post MX though. I would listen to your body. I wish I had found that MMSK video earlier although I would have been afraid to go against the express orders of my PS.

NJsurfer

Thanks again. I was at expansion #3 today and my PS gave me his ok for modified PT. He's just precluding pec strengthening or over-stretching. He does want a copy of the PT plan and I do appreciate his discipline. They've seen people rush the recovery and shift the implants. I know I don't want that! Just want maximum flexibility so I can get back to surfing hopefully by summer!

katykids

My local hospital had a PT that specialized in PT with MX patients. If you can find that--that would be ideal. Best of luck.

I went to the pool today to do some work on my shoulders. I was very active at the gym prior to this all. Pilates, yoga, TRX, weight lifting. Walking in the pool is a bit different but the company was good! Lots of good humor! I am looking forward to going back.

eta. my husband surfs here on LI. I don't. I wanted to try it at some point. a goal now perhaps to get that core back into shape. he also used to participate with my son is surfer's healing. a program for kids with autism and surfing. super cool.

NJsurfer

That program sounds amazing katykids! Love to get kids into surfing especially those with some challenges. It seems to provide a focus for them that is different from a lot of sports. Good luck with your shoulders. The pool is a great place and I am sure you'll get back to some of the other activities you love. It's odd how we have to guide ourselves through something when so many others have gone thru it but that's why we have each other and not only the surgeons! Expansion 3 today. Boobs keep growing. So weird! I was a very small person before - 32/34A and so this is (somewhat) funny to have to pay attention to breasts for the first time in my life!

katykids

I agree that we do guide ourselves quite a bit but it's an amazingly supportive network! Good luck with expansions. I never really thought too much about my boobs before this either. Be well!

kaycee3

Hi NJsurfer. I am I am about 14 weeks out from my Mastectomy. I refused any PT at the beginning thinking I could do it on my own. I was so wrong! I had my first PT appointment last week and have been faithful about doing the exercises every day, I have noticed that my pain in my arm is better and I can cross my arms now. I still have tightness over the expander but it's tolerable. My physical therapist works with mastectomy patients exclusively. I have 4 more appointments booked with her. My plan was to try to get my range of motion back as much as possible before my exchange surgery. I think that the PT is important no matter what stage you are at, I have definitely noticed a big difference. My PT also told me not to do any weights until I have my normal range of motion back, otherwise, the muscles will stay "short". Best of luck to you!

NJsurfer

Thanks for the response! Good luck with this phase! I had a successful exchange on January 25th and have been doing "normal" workouts for a while now. I've traveled with luggage and carried it myself! The big test will be surfing. I'm holding off until May/June but hope that will go as well as my regular activities. It will be a test I am sure! Best of luck with your recovery!

NJsurfer

I surfed today! It's the 6 month mark from my first surgery so I truly can't believe it! Another milestone in this journey!

kaycee3

NJsurfer

THAT IS GREAT!!!!!!!!!!!!!

katykids

Awesome! I want to get out with my husband one of these days! It's just getting the wetsuit on that has me a little put off. But if I wear one of his...it's a bit bigger. I am so glad the warmer weather is finally getting here!!

NJsurfer

The wetsuit is totally the issue! It was my hardest part as you can probably understand! But as the flexibility increases I am feeling good about it!

NJsurfer

Thank you so much! I know this crew understands the milestone!!!

LemonMom

I requested OT when I had a huge cord show up under my left arm 4 weeks after BMX (1/2016) Had to have my Primary Care doc prescribe it and I went to all 8 sessions (2X/week) and religiously did prescribed exercises daily. Therapists were lymphedema specialists and did some massage, lots of stretching and lymph drainage movements (4 nodes per side/no treatment). I was in very good shape prior to DX in Nov 2015, work in healthcare system and really have been bothered by the gap in PT/OT after BMX. Had I not spoken with another woman I knew about cording just days prior to its presence, I would have had no idea what it was and certainly didn't know it was a risk. Had it not been for the OT I don't think I would have recovered as fully - possibly ever. Thankfully I regained full range of motion prior to implant surgery on 5/25 and am pretty much there again nearly 6 weeks post 2nd surgery. The cord has diminished to the point that if it is still there I do not notice it.

I will look at the video referenced above. As a former bodybuilder, I wish I had specific direction on safe/lower risk workouts other than don't do chest or shoulder exercises. On the flip side, I am grateful to have had no significant complications and be able to workout now - just wish there was more exercise guidance after each surgery to help return to some "normalcy".

NJsurfer

This does seem like an opportunity! Maybe that's my next career