mastectomy pain-advice please?

fauxgypsy · 08-24-2007, 06:22 PM

It was two weeks yesterday since my mastectomy (modified radical). My chest is very tight and it hurts to move most of the time. I have been trying to do the exercises as often as possible but I feel like my pectoral muscle is a steel band and this tightness goes all the way to my wrist sometimes. Any time I move from one position to another it hurts. I got my drains and staples out Wednesday and I mentioned the stiffness to my surgeon. He didn't seem to think it was out of the ordinary. He has ordered physical therapy for me but they are taking their time. I can't seem to find out if this is normal or how long I can expect it to last. I am worried. I have to get back to work and I can't raise my elbow higher than my shoulder. I am a very active person and this is driving me crazy, the uncertainty as much as the pain. Doing the exercises is like pulling cold taffy. And it seems to cramp up too. Am I expecting too much or am I not doing enough? I am miserable tonight. I am going to take something for pain and go to bed. Sorry I am so down tonight.

Leslie

PinkGirl · 08-24-2007, 06:43 PM

Hi Faux
Sorry you're having a down day. I don't remember exactly when the pain
went away, or when I could move my arm easily, but I know it wasn't in
2 weeks. I left the hospital with some exercises to do from physio and I did them very carefully and gently at first. The one that helped me the most was putting a rope over the shower curtain and pulling my bad arm "up" with the strength of my good arm. I remember feeling like my chest was wrapped tightly with duct tape. I slept with a tiny little pillow under
my arm. It gradually got better with time. I hope you can at least get some advice from a physiotherapist - maybe even on the phone. Good luck.

sassy · 08-24-2007, 06:49 PM

From my experience, I don't think this sounds unusual. My surgeon really restricted me from doing too much too soon. He was very concerned about lymphadema.

Not sure what type of work you do, but I returned to work in two weeks. Just was very careful about lifting and overdoing. I did have to take pain meds for a while also. Also, being "down" seems to come with the territory at times. If you need help with that, don't hesitate to ask.

Hang in there, it all gets better but we do tend to be a little impatient sometimes and just want to "get over it"! Be kind to yourself, you've been thru some major surgery!
________
ANALGOOD CAM

Chelee · 08-24-2007, 07:20 PM

Leslie,
With my MRM I can't remember exactly how long it was until I got some relief. But your only two weeks out and what you describe sounds pretty normal. Having an MRM is a pretty serious surgery and it does take time. I do understand your concern because I felt that way too when I had mine. I remember telling my surgeon how tight it was across my chest and the pain I had. Plus it felt like my right shoulder was out of its socket. It hurt like it was froze or locked up.

My surgeon and NP showed me these exercises where they had me get close to a wall with your toes almost up against it....then you put your hand/fingers on the wall and *walk* them up *slowly* just enough to where its comfortable to you . (Don't kill yourself or over do it...just walk your fingers up the wall a bit over your head until you start to feel it stretch a bit.) But go EASY! You walk your fingers up the wall and back down a few times a day. It really does help. You can double check this with your surgeon ahead of time just in case. You know that old saying "Move it or lose it".

Once your surgeon gets your therapy set-up I think in time you will be feeling much better. Your poor body has been through alot. I know I was pretty misrable for quite a while. Right now I know this is slowing you down but I promise, it *does* get better.

Hang in there Leslie.

Chelee

tousled1 · 08-24-2007, 07:27 PM

Leslie,

I had a double mastectomy last June - MRM on the right and a simple on the left. I had a lot of tightness in the chest but did my exercises and saw a physical therapist. I can't remember how long it lasted but since you are only two weeks out from surgery I wouldn't be too concerned. Just make sure you do exercises and use the arm. Things do get better.

cafe1084 · 08-24-2007, 09:08 PM

Leslie, I just wanted to add that I just finished therapy for a really tight chest and arm. The PT said the pec muscle gets "mad" and balls up after a mastectomy. She also said the fascia gets wrinkled up and moved around during surgery, creating that uncomfortable feeling and tightness. Luckily, PT does help this, along with some massage of the incision line(uncomfortable, but effective) I waited almost 7 months before getting PT and by that time, I had developed some adaptive strategies to avoid using that arm and ROM was really restricted. You are so new from surgery, just don't overdo it.

It's a big change and not one most people fell good about. It drains you emotionally, physically, and mentally. I hope you start to feel more like yourself soon.

Thinking of you,
Steph C

Sheila · 08-25-2007, 06:33 AM

Leslie
I would not be concerned since you are only 2 weeks out...I too cannot remember when the pain and tightness subsided....so thats a good thing..it does go away. While continuing to stretch the area and strengthen it, do not overdo it....you have been through alot, let your body heal. Maybe take your pain med about 30 minutes before you stretch. Hope you are feeling stronger soon.

BonnieR · 08-25-2007, 06:54 AM

I agree with the others. It is early days yet. I also experienced the symptoms you describe. (Ironically it is worse on my left side which was the non-cancerous side, the prophylactic side.. AND I am left handed!! )Anyway, I was referred to PT for lymphedema evaluation, ROM and such. Was taught exercises and lymph massages. I was also given some breast cancer books at the hospital/doctor's office and they describe some post-op exercises one can do.
It is wise to take pain meds to keep ahead of it. And to make the exercise easier to perform.
I have been slacking off on my daily exercise routine and am paying for it today. My left arm and hand are really feeling compromised...
I am 3 months out of surgery.
Keep the faith..
Bonnie

fauxgypsy · 08-25-2007, 07:47 AM

Thank you all. It does help so much to hear from others who have gone through the same thing. I feel a little better today. It seems like I am dancing the two step (two steps forward, one step back). I hope to spend some time in my studio painting today. I own my own business, Love Designs, we do faux finishes and murals. Up until last fall, I primarily worked alone. My youngest daughter started working with me and she has been a huge help through all of this. But there are still some things that she cannot do. We didn't schedule any work through the summer because her children were out of school and I was feeling yucky from chemo. Summer is usually slow anyway for me so it worked out well. But things are picking up and I have two faux commissions scheduled for Sept. already and a mural coming up. I can supervise the faux but I need to be able to use that arm for the mural. We can manage finacially without my income but it is not easy so I am looking forward to getting back to work. I have been selling some artwork at a local gallery so that has helped.

I discussed all of this with the surgeon before the surgery, even going so far as to show him my portfolio so that he could give me a realsitic idea as to when I could get back to work. I stressed the fact that I use ladders and scaffolds and that I don't just paint pretty pictures. I don't think he got the idea, I seem to remember him saying two to three weeks. The good news is that I was able to do small art works later in the week after I came home.

Reading the literature on a mastectomy is so little help when it actually happens. I read "some numbness is to be expected", and I feel that I can't feel part of my back and I have itches that I can't scratch and "Some tenderness" appears to be the feeling that the entire area at the back of my underarm feels as if it has been sanded and the slightest touch hurts. Nobody mentioned the extreme tighteness as far as I remember. Of course at this point, I've had so many drugs that I might have forgotten. It is getting better, but a couple of my friends appear to have had different experiences or else it is like childbirth and you tend to forget the actual pain and annoyances. I feel like a hermit because I am not comfortable going out without a bra, and even the softest bra feels painful if I have it on very long at all. I had to bid on a job Thursday and as soon as I got back in the van I was taking it off before my daughter had the van cranked. I know that it will improve I just want it better NOW.

Leslie

BonnieR · 08-25-2007, 08:00 AM

Leslie, I am an artist too. More the "paint pretty pictures" type. lol! I do small work on paper. But I know what you mean. "The Season" is going to be starting here soon and I am in some galleries that will want new product. I am not feeling too motivated to paint right now. Or when I do it is just in my journal. .....
Can you talk to your commissions and get a reprieve??

SoCalGal · 08-25-2007, 09:11 AM

Hi Leslie,
Real quick - totally normal. It just takes awhile to heal. Stay on pain meds like tylenol on a reg. basis. Try not to worry about the pain. If you can walk everyday, that's good. If you can do GENTLE movement, that's good. Everything will feel better than this pretty soon. I did not have physical therapy but went thru a TON of surgeries. It just takes time. The tightness you are feeling is scar tissue forming. Gentle stretching will counter this and when You are 100% healed, either phys therapy or Pilates on the reformer will greatly improve range of motion. I think it takes at least a year for the tightness to subside. Even for me, I am still tighter on one side than another and it's been years but I don't have pain. I work out twice a week at pilates - it's changed my life and my body. For you, just know that you will get better and your body is just trying to repair. xoFlori

SoCalGal · 08-25-2007, 09:15 AM

Also, the phantom itching will improve as well. It used to drive me NUTS. Sometimes if I lean against a hard seat back it will start again. Every thing will improve with time. The doctors have NO IDEA what it's really like. NO idea...Have confidence and some patience - your body has had major parts removed

- I can do everything now and for quite awhile I couldn't even lift a bag of groceries (literally).

fauxgypsy · 08-25-2007, 10:24 AM

Bonnie, I love to paint pretty pictures, it is just the "pat you on the head" attitude when I try to explain that the kind of decorative painting I make my living doing involves construction equipment and tons of tools and contracts and deadlines. It is as if they think it is a hobby or something. I am painting rooms and buildings and it is more physically challenging than they will understand. I felt like there would be more recovery time than I was told to expect by the surgeon. I would still have had the surgery, there weren't a lot of options, I would just have been more prepared. I like being prepared. When I went back to my post op follow up I took him printouts to show him there were other options for the drains than pinning them to my clothes. he looked at me and asked why that bothered me. I told him that it wasn't comfortable with them just hanging fron my clothes. He just doesn't get it and he is a good surgeon. I am beginning to feel that all surgeons should have to have some sort of surgery just to understand where their patients are comng from.

Flori, I always love your posts. From what I am feeling now, I think yours times for healing and suggestions for exercise are probably right on target. Thank you, you crazy sexy thing, you.

Leslie

BonnieR · 08-25-2007, 11:11 AM

I hear you Leslie. . And what you do takes art to a whole other level!!! Literally!!!
Speaking of surgeons. The guy who removed my gallbladder years ago told me how HE had the same surgery and HE was out and about in TWO days. No big deal. I told him I wished I had had HIS surgeon!!! lol!!!

Andrea Barnett Budin · 08-25-2007, 11:45 AM

Leslie my love,

What you're experiencing sounds totally normal. We have all been through it. And the tightness, phantom itching do last for up to a year. I still get tightness from time to time in my arm, which is painful. I take a Flexerol (muscle relaxant) and it goes away. I elevate my arm on several pillows, which also seems to relieve the pain. I am so sorry you are feeling all that you are (physically and emotionally). The latter is easily fixable, or at least is for me, w/anti-depressants. I need a little chemical alteration and I'm ME again!

The exercising is essential. The fingers walking up the wall hurts like hell. I was fortunate to have a surgeon who was INSISTENT on elevation when in bed and EXERCISE. And, he had suggested I have a private nurse. No, I said. Not necessary. You'll see. Do it. So Paul told me to make the arrangements. What was good (I had mastec and tram flap reconstr on the same table, so my recovery was more complicated, including the abdominal rearranging of my innards) is that the nurse MADE me do the exercises every few hrs. She MADE me walk. I walked to the door of the large room and wanted to get back to my chair. NO, she made me walk down the hall. I got to the room next door and wanted to go back. NO. And so on. I would never have pushed myself as hard, but in the end I was really moving, bending and such within a wk. At my post op visit, the nurse crinkled her eyebrows and said, Wait a minute. Didn't you just have a tram flap? Look at you. You're not walking the way most people walk after that. All doubled over. I said, The doc told me he sewed me up really good and I wouldn't split my stitches. So I felt free to let 'er rip, no pun intended.

The doc showed me how to take my bad arm and reach over my head and grab my opposite ear with my hand. He looked so funny, but he was demonstrating what I needed to do. That was extremely painful. I did do it though, under Nurse Hatchett's strident commands. And once I got home, I made believe the nurse was still pushing me and I followed up. In the hospital, as I lay in bed, I'd do the over the head thing, which helped ease the pain but allowed me to STRETCH, which is sooo important, along with strengthening my muscles.

I'd swing my arm forward and backward like a pendulum when I felt like someone had tied a tourniquet around my arm too tight and forgot to remove it! That pain was excruciating. The swinging movement kept the oxygen flowing, which is what you want to do, to avoid frozen shoulder or lymphodema. KEEP THE OXYGEN FLOWING, Leslie, whatever you do. And PUSH yourself, to speed the process of healing up. That was my surgeon's theory, and I adopted it, as I had such good results faster than anyone expected.

The doc did say DO NOT SLEEP ON YOUR LEFT SIDE. Okay. For how long? Forever. Forever? YES. Okay. He says that because of the numbness, you can cut off circulation and not realize it. So I do not sleep on my left side. The doc said DO NOT CARRY YOUR POCKETBOOK ON YOUR LEFT SIDE. DO NOT LIFT ANYTHING OVER 20 POUNDS WITH YOUR LEFT ARM. DO NOT HAVE BLOOD PRESSURE TAKEN ON LEFT SIDE. EVER. DO NOT HAVE A NEEDLE STICK ON HE LEFT SIDE. EVER. Elevate on several pillows as often as you can. Get this particular really, really soft bra and get a *bra extender* (which I found in a fabric store). That helped tremendously as *I* had to wear it 24 hrs a day, w/my tram flap boob!

Hope these suggestions are helpful. You are in my thoughts, Leslie. You've been through so much, be good to yourself, please. And when you hoist things, favor your right hand every time, painting pretty murals and such. Still love you and your PHOENIX RISING OUT OF THE ASHES. What an inspiration you are! How beautiful that painting is; seared in my memory. Ladies take a look and check out Leslie's profile pic. We are each like a phoenix -- beings of great beauty rising up above our adversities, becoming reborn and full of wonder. MUCH LOVE always...
Andi
AndiBB@aol.com

dhealey · 08-25-2007, 12:09 PM

Leslie, I agree with everything Andi suggested. Her surgeon and mine are on the same page. You must do your exercises at least twice a day. Sometimes I would just move the arm forward and backward to stimulate the circulation. I had my first mastectomy in October. Nothing on that side feels tight anymore and I have complete range of motion. I had my second mastectomy in June of this year, still have some tightness, but have complete range of motion back. I think once you are able to work again you will feel much better. Just remember to take rest breaks. Best of luck!

StillHere · 08-25-2007, 12:33 PM

Pls don't rush back before you are ready. I came back to desk job after 2 1/2 wks. I still needed to take 1/2 percocet and it was hard to concentrate. A great method to make sure you get enough arm exercise is to place a piece of (Painters tape) as high as you would of been able to reach before mastectomy on a door jam or wall close to your bathroom. Everytime you get up to use the facility, do the hand walk up the wall as far as you can muster. My husband had to scold me a few times when I passed the tape and did not strecth. It was an easy way to keep the arms streched. I had complete range of motion in no time. I also did the hand walk in the shower w/ the hot water pouring on my shoulder. It really did make a difference. Hope this helps you also. Peace be with you. Karen

Alice · 08-25-2007, 12:35 PM

Hi Leslie,
I think everyone is different. I know some people that didn't have much trouble, but I think that is the exception to the rule. I remember feeling the same way you are now and thinking it would never get better, but it does. The most important thing is to not let your shoulder freez up. if it does some people have to have additional surgery and that's no fun. Keep doing the excersizes your surgeon gave you and I think the best thing is to push for the PT.
Alice