Joanne_53
I was given a list of do's and dont's when I left the hospital.  Was told to call for my follow up appointment  for 2 weeks from now.  My arm and shoulder are also sore.  Doing a few of the excercises that are recommended in the handbook (slow but sure) seem to help.  Being left  handed and having my surgery on the left side has also made it challenging.  My hand feels numb and itchy, but they say that is normal.

Hi Fran, I had the same problem with the surgery on my right and being right handed --- the problem with the  sore shoulder/arm did not develop until about 3 weeks after surgery.  I followed the exercises that I was given and had no problem doing them.  I did not coddle my arm although I was slightly protective.  I am starting to this that is might be lymphodemia or something similar.  I have been reading more on Breastcancer.org and many people have written about this very thing on there.
Thanks for the note -- look forward to hearing how your recovery is going.
Joanne

I just read about something called "Axillary Web Syndrome (Cording)" -- this is exactly what I have -- I actually felt the "cord" today in the shower -- at least now I have an idea of what it is and how to deal with it.
Joanne

Hi Joanne,

I thought you might be interested in what the Canadian Cancer Encyclopedia (CCE) says about possible side effects after breast surgery.  There is a section called, "Changes to arm and shoulder movement", that mentions the sensation of having a cord pulling in the muscles after surgery. 

Has anyone else had this feeling after surgery?

Best wishes for your upcoming appointment!

Sara

Thanks Sara -- it is interesting how this affects so many different things .... and it isn't just about my boob any more ----
Joanne

Hi everyone,

I am 2 years plus post surgery - lumpectomy & axillary node dissection.  My saving grace to all these symptoms was my phyiscal therapist who specializes in breast cancer rehab.  She is a leading expert in treating lymphedema for the province of Sask.  I am so fortunate to have had her on my care team.  Cording, early stages lymphedema, shoulder strengthening and range of motion were all part of her treatment plan.  I regained full range of motion in my shoulder, pain is gone, cording is gone and I manage the lymphedema risk with the use of properly fitted compression sleeves.  I have been educated about manual lymphadic drainage and how to manage the risk of lymphedema through her. I am doing extremely well as a result.  My advice is find yourself a physical therapist that is trained in the treatment of lymphedema and breast cancer rehab.  Google lymphedema treatments for your area and inform yourself.  Don't go to just any physical therapist as they could unknowingly aggravate the situation.  There is much that can be done successfully if you can access the right individual.   Good luck with everything.  I hope you can find someone to help your through this.

Lily-

This is great information for so many of us. You were fortunate to have found a physical therapist who specializes in the treating of lymphedema and breast cancer rehab.

I am 1 year post surgery -same as yours - and for the first few months had the cording and sore shoulder/arm etc. Visits to the lymphedema therapist were helpful with the exercises given and the information/techniques for manual drainage. I have just been told that I now need to get a custom fitted compression sleeve instead of the ones I have been using. Unfortunately, my job precludes me from being able to elevate my arm to help with the lymphedema until I get home at night. I definitely find some mornings that the shoulder is sore from the way I end up sleeping in order to keep it elevated.

I would definitely agree that finding a therapist trained in lymphedema therapies is a great help. I have also been told that water exercise is a great way to gently exercise those muscles and areas that have been affected and decrease the lymphedema effects. I know I have certainly found that being in the water sped up the healing process for range of motion and eased the soreness in arm/shoulder area.

Hi Lily,

When I read your email it was like someone sent you to me from heaven.  I had my breast surgery last Tuesday Feb 14 (what a Valentines present that was) and the a lumpectomy and node removal.  Have had problems with stiffness, pain and swelling.  I have learned how to deal with that, but it is when I try to even write down a phone message, I cannot even hold the pen correctly as it feels like my hand is asleep/numb.  Becoming very frustrating.  I will be for sure telling my surgeon about this when I see him next week.  Live in Ontario and did Goggle therapists in the area who deal with this situation.  Found 2 who are in the same community as me.  Thanks for the advise.

Fran

Hi Fran...& all,

So happy I could shed a little light on this for you.  I recall all too well the strange sensations and feelings I had after the surgery.  Had no idea what was going on as no one had given me any information on what to expect, including my surgeon.  I was kind of left on my own.  Luckily, I am the inquisitive type and did some research and asked a lot of questions which led me to my physical therapist (my angel in disguise!).  I recall coming out of the anesthetic feeling like someone had poked me with a 2 x 4 in my back shoulder.  I asked the nurses about it thinking it was the positioning during surgery, but no one could answer my questions or at least give me any information.  It was only when I saw my PT that she explained the muscles that had been "disturbed" during the surgery, nerve damage and the resulting scar tissue etc....  She began a treatment plan that included scar tissue massage, arm exercises etc.....and ultimately a very close eye on the lymphedema issue.  I am a stage 1 lymphedema so I manage it very closely with compression sleeves and am mindful of what I do and how I do it.  Without the knowledge from my PT, I shudder to think of what kiind of shape I would be in.  Most doctors do not understand the risk of lymphedema, and have tendencies to brush it off easily.  Don't allow that to happen!  Speak up and advocate for yourself.  Don't allow any needle pokes, iv's, or blood pressures to be taken on your affected limbs ever, no matter what anyone tells you.  The bottom line is you are the one at risk, not them, so don't take chances.  I had a medical procedure done this week that required me to be anestitized, so I had my affected limb literally covered in "Lymphedema, no needles, iv's, or blood pressures" written over my entire arm with a permanent marker.  I guarded that arm with my life and am glad I did.  .......  Sorry, I digress :-)  Just want to make you aware of what you need to be mindful of from now until .....forever.   Hope you have as much success with finding a great "lymphedema" trained PT as I did.  They truly will make all the difference in your recovery and ability to regain your mobility as you heal.  Positive healing thoughts to all. 

 Narsook:  Water exercises are wonderful as the water pressure acts like the compression sleeve does in assisting the lymphatic fluids to move.  The water also makes it easier to exercise the limbs in a safe manner .  I do a lot of swimming now that I've regained my range of motion and it helps tremendously.  Not sure what type of work you are in, however, employers should try to accomodate you as best they can with respect to providing you with required breaks, ergonomically correct work stations & tools etc.....???   Is that something you can enquire (or have enquired ) about? 

Hi everyone - There is a lot of great discussion going on here. I just wanted to let you know that there is a lymphedema group on the site that might interest you. The group has been set up for all but specifically for Canadians living with or at risk for lymphedema to gather, share experiences and information and support one another. Sara, CancerConnection Team

Hi caner team,

Myself and family have noticed all the concerns and unknown about this subject over the past month.  Maybe the surgeons, pre-op people etc should have a better understading of this VERY important issue, and talk to us about this instead of us cancer victims running scared .We are all trying to deal with this on the same level, but if things were on the up and up, life just may be that much easier to get through the day.  One day at a time.

Fran

Lily: Always nice to talk to someone else and know that you are on the right track with things. I have started swimming and yes, range of motion certainly improves in the water.
As for the type of work I am in and the employer accomodating my needs - I work in daycare. It's not a desk job and I am on my feet a lot which is why I noted before that I rest my arm when I come home. My employer does her best to accomodate my needs with regards to my health but the reality of daycare and working with children is that there aren't any ergonomically correct work stations or tools. That's the difference between office jobs and working with children. Pros and cons to each job when you have health concerns.

Oh wow.....Narsook, that puts things in a whole different light knowing the type of work you are doing.  That puts a lot of additional physical stress on you that others don't have to worry about.  I am glad you are able to exercise in the water for some therapy and are noticiing results.  Healing can be such a slow process.... Wishing you all the best with your recovery and healing. 

Hi Fran,

you're right....there are so many  things to consider and we don't always get the full information from everyone.  The one thing I learned throughout my journey was to advocate for myself.  I discovered my voice and used it to help me along, by asking questions, researching and networking with others.  It's unfortunate that our health care system does not have a pre-determined clinical pathway for all, but again, we are better off than many south of us who don't have health care.  It's not perfect, but I think by participating in a chat room like this, networking with others, and just speaking out, we can make a difference in a good way, for many others.  It's frustrating and confusing when you're going through it, but don't be afraid to speak out, ask questions, and seek others' advice.  That's what we are all here for, to help and learn from each other.  Sending postive healing thoughts and ((hugs)) to you.

Hi Lily,
Was wondering if everyone but me had gone south since not much activity on the web site for the las few days.  It is so right about speaking out, looking up info yourself and most of all asking questions.  Will be seeing my surgeon on Monday and hope he is ready for all the questions and concerns I have.  Again everyday feeling stronger and today even curled my hair, put makeup on to tried and look pretty for myself. It really made a difference on my outlook for today.

Thanks again

Fran

That's awesome Fran!  Glad you are starting to feel better.    Your comment about putting on makeup, doing your hair etc....today got me to thinking about the Look Good, Feel better program that is available to cancer patients.  Are you familiar with it?  If not, you really should check it out.  It's a wonderful program that's available at not cost to you.  You go home with a big box full of goodies, but best of all, you learn tips about skin & hair care etc...in a roomful of women in the same circumstance.  Lots of laughs and practical tips.  I highly recommend it.  I left there feeling wonderful.....something to be said about that whole concept.  Glad you have a bunch of questions for your surgeon.  Are you writing them down?  I kept an ongoing list and would jot down the answers so I could go over them when I got home.  I got a lot of strength from that because at my first meeting with my medical oncologist, I was terrified, yet he said several times "you'll be ok".  I wrote that down and whenever I was feeling down, I would read that and it would pick me up again.  I told myself, a doctor wouldn't lie about that....so took that quote to the bank!  He was right!   One day, one step at a time....you'll get through this!

I echo what Lily said.  I was in the hospital on Feb 14 overnight, for an emergency procedure.  Even though my family doctor had provided a letter for me to take to emergency, listing the problem and my breast cancer history, I had to constantly tell the nurses not to do anything on my left arm.  When I was finally admitted to a ward for overnight I was fortunate that my RN was herself a breast cancer survivor so she put a sign above my bed that no cuffs or blood on my left arm.  However, when I woke up after surgery, there was a blood pressure cuff on my left arm.  I asked the recovery room nurse why and she said they didn't know.  I can't believe that it wasn't in my chart, I think they were just careless.  Next time, I'm going to do what Lily did, and write it all over my arm, then they won't have any excuses.  You would think that health care professionals would be aware of the risks for us, but they don't seem to take the problem seriously.

I had my surgery in August, 2011, finished radiation at end of Nov then 1 week before Xmas started feeling my armpit, shoulder and arm very sore, numb and tingling.  Have had many tests since to figure out what it is and they now believe it's a nerve problem.  Maybe you could ask them if this is what's happening to you, or what is your recent update?  I would love to hear from you.

Hi bcs2011,

After my lumpectomy on Feb 14 2012, I found the tingling and numbness in my hand to be too much.  Could not even grip a pen.  When I told the doctor, he too was puzzled as he said he was nowhere near anyt nerves.  Found out that I needed a mastectomy and had that March 9.  Still have the numbness in my hand, especially my thumb and first finger.  Having these 2 surgeries done on my left side and being left handed has made for just another challenge for me.  Will be seeing the doctor again this Wed and hopefully get some answers.

Fran