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Tight chest from mastectomy scars

hikerchick's picture
hikerchick
Posts: 21
Joined: Nov 2010

Hi, I'm hoping someone can share helpful experience about dealing with the tightening of scar tissue I have after a double mastectomy with sentinel node removal. I had the surgery 2 months ago. Everyday for the first 6 weeks I did strtching/range-of-motion exercises 3 times a day. If I missed one, I noticed the tightening right away and knew I couldn't reduce frequency from that. After about 6 weeks, I began getting back in to normal activities and thought I had set up the healing just fine and didn';t need to add these stretches so frequently because I was "done."

Now, when I put my elbows back I feel like someone is stretching dental floss tightly across my chest. It's quite unpleasant and happens many times a day even when I don't exercise.

I kayak surf and do yoga and other stuff and REALLY want to correct this situation if at all possible. I use cocoa butter and vitamin E oil and some other quality creams on the scar areas to help keep the skin pliable.

Any suggestions?

Thanks,
Nancy

leabow
Posts: 28
Joined: May 2010

I had my surgery April 23, 2010 and I still have a tight chest where my scar is. I take arm exercises every day. Guess it just takes time.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

My bilateral was Jan 14th, and I have the same issues along with some range of motion issues on the left side (lymph node dissection). I started seeing a physical therapist about 2 weeks ago. On the first visit, she showed me some stretches and did some education on where the nerves in that area are and how they function. The stretches are different than what I was told to do after surgery. On the second visit, two weeks later, she measured again. I've gained 10 to 15 degrees in the range of motion.

She also said that even if the skin is pulling, you can eliminate some of that by stretching the nerves.

All that being said, I would recommend seeing a physical therapist.

Hugs,

Linda

hikerchick's picture
hikerchick
Posts: 21
Joined: Nov 2010

At 6 weeks post-op my range of motion was excellent. The surgeon's nurse today told me it's too early to think I may need physical therapy, though my surgery was Dec. 30. If I stand up straight with my arms at my sides I feel like I have on a bra 2 sizes too small, even with no bra on.

How are your new stretches different?

Thanks,
Nancy

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

I'm not even close to being an expert but I think you should request a referral to a physical therapist for at the very least an evaluation. My surgeon referred me just two weeks after my mastectomy and I honestly didn't think I needed to go but I went for the evaluation to see what they thought they could do for me. I was convinced it would be worth the trouble. One of the things I have learned from this board is that every doctor seems to have their own way of doing things and I didn't have the best surgeon, but I am grateful that he knew I should have some physical therapy after the mastectomy. I only had one breast removed so maybe the time frame is different for you but please at least ask because it's your body. I hope you will be feeling better soon.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

The exercises they gave me after surgery were to climb my fingers up a wall, lay on my back raise my arm and squeeze a ball, etc.

The PT explained/showed how simple small slow movements can effect my nerves. For instance, while sitting down put one hand in front of you palm up. Use the other hand to gently move the tips of the fingers toward the wrist, either in or out. Take a moment to listen to your body, where else do you feel that simple stretch...armpit, elbow, shoulder? Then while still stretching the fingertips, slowly move the ear (the one opposite to the hand you're stretching) down toward your shoulder. Where do you feel that? Then, with the ear still to the shoulder, tuck your chin in toward your chest. Where do you feel that? If you slowly move the elbow, up or out, where do you feel that? Once you've found a position that stretches, hold it for a little bit. Then come back in (release the stretch a little), hold that for a while. Then go back to the stretch position again and hold for a while. Continue to repeat.

All movements should be slow and careful (I have trouble with this part). And you should never stretch to the point of pain. It's ok to feel the tension or the stretch, but you shouldn't be causing pain. She also explained there are 3 main nerves that run from the neck to the hand, and muscles will 'bunch up' or tighten to protect the nerves.

I love that these are stretches I can do throughout the day, while watching tv, at a red light, in a waiting room. I was not given a list of stretches, or a specific number to do, just told to use variety.

It's clear from all your questions, that this is really bothering you. It also sounds like you are not getting much help from your surgeon and his office. Can your onc process a referral for you? Is there another surgeon you can talk to?

Let us know what happens, and I hope you get some relief.

Hugs,

Linda

hikerchick's picture
hikerchick
Posts: 21
Joined: Nov 2010

Great for you to share some specifics of the different types of "check-ins" with your body, to get down to what's happening to YOU, specificly, or to me. I usually get generic answers, they don't satisfy my questions, and I end up struggling for a long time.

I'm going to Hawaii for the first time in a week! Yay! My sister and I. I think I should request authorization to see a PT when I get back, after hearing everyone's stories and opinions. And, yes, if I don't get satisfaction from the surgeon's office, I'll call my med onc or get a patient advocate.

I participated in Yoga for Hope today in San Diego (my area). It was great! Most participants were not survivors but 2 instructors were. My flexibility is great; doctors say it's excellent. It's difficult to get medical staff to understand that I'm not concerned about flexibility. I'm concerned about a lot of discomfort almost all the time now. It wasn't like this 2 weeks ago.

So, thanks everyone! I'll put a call in for a PT referral Mon.

Happy healing, everyone.
Nancy

cinnamonsmile
Posts: 1052
Joined: Dec 2010

i too have nerve damage from knicking the nerves during the snb during my bilateral mastectomy. i am current seeing an occupational therapist.both her and my surgeon suggested i actally do a light massage above, below, and on the scar line from the chest into my underarms.my therapist said that she noticed how loose i was compared to women who have had to have radiation along there, that rads can really tighten up the skin along there. she also said that some scars, breast mastectomy/lumpectomy or otherwise may start to or stick to the underlying tissues. i rub a vit. e creme on my scars and surroundng tissues 2-3 xs/day and i do my massaging then,according to how my occupational therapist showed me.if i am having too much pain, i either do it very lightly or skip if it is that bad. i also have my home exercises to do which i notice, dont really stretch the skin necessarily, and i can see where it could start to stick.but i always call my surgeon or talk to her about everything i have questions. what works or is recommended for me, may not be what is right for someone else. (if it wasnt for my 1200 mg of gabapentin per day, i probably wouldnt be able to any of that, as i still have pain, discomfort, and numbness in my affected areas!)

hikerchick's picture
hikerchick
Posts: 21
Joined: Nov 2010

So, is it best to keep the scars from sticking to the underlying tissues? I'm under the impression we want the "skin stuff" and the chest wall to "seal," but I still get some fluid build-up and it seems like those areas somehow are not "sealed."

I don't have pain, but discomfort from tightness is now 24/7. My numbness was very bad for quite a few weeks, but is quite minor now.

My surgeon has not spent time with patients much outside of the operating room. The nurse practitioner handles all this, but is out for 6 months with an injury. The nurse has only given me generic responses and we have gotten upset with each other on the phone.

If there's anything more specific about your situation that you are willing to share, I welcome others' experience.

Good luck with the pain! It WILL get better!

Thanks,
Nancy

Rague
Posts: 3383
Joined: Aug 2009

Not sure what you mean by "still get some fluid build up". Are you talking about a seroma or lymphedema? Yes - you can get lymphedema on chest/body/back/shoulder - not just in hand/arm.

hikerchick's picture
hikerchick
Posts: 21
Joined: Nov 2010

i was told it was a seroma a few weeks ago, then I thought it disappeared, now (at the time of month I retain fluid)some of it is back.

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

Naturally it is best to check with your doctor and/or physical therapist. After my mastectomy in Dec 09, the physical therapist showed me how to massage my scar and she told me I would need to massage it for several years or it could attach itself to my chest wall.

hikerchick's picture
hikerchick
Posts: 21
Joined: Nov 2010

Was I supposed to be doing massage all this time?? I was told I could try that after a shower if stretches were too difficult. I was never told it was necessary to my best recovery.

What kind of massaging were you told about? If I massage little circles around the scar tissue I don't feel like I'm accomplishing anything.

Thanks,
Nancy

Rague
Posts: 3383
Joined: Aug 2009

Stretches are not 'easy' - period! The more you do - the easier it gets. Massages are great and do help but only if done in the right way/order. You need to drain the 'healthy' lymph areas so that the next lymph area you massage have somewhere to drain to. My MLD machine takes an hour to do the sequence. Unfortunately we will never be back to exactly what w were before - New Normal.

Susan

carkris's picture
carkris
Posts: 4529
Joined: Aug 2009

I stretch but also Moisturize at least twice a day. I also had radiation 9chest) and my rads onc emphasized the importance of this. I think it helps the skin whther you have had rads or not.

Hippiechick58's picture
Hippiechick58
Posts: 320
Joined: Feb 2011

I had a BLMX back in Sept '10 and I still have tightness and numbness(on the side they took the nodes from.) I tried the exercises they gave me for post-op but it caused too much pain. I never thought of massage, but it sounds great! I might just go out today and buy some vit. e oil and try to massage the scars. Thanks for the tip. I have my last Chemo on Mon 3/7 then I start radiation the first week of April. Hopefully radiation won't ruin my chances for reconstruction, which I plan on having after the radiation. Good luck with your scars.

Be Well,
Dianne

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I had a lumpectomy, but, it looks like the pink sisters here that had a mastectomy have given great advice. I am sure it will help you!

Good luck!

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

I had bilateral mastectomy June 22, 2010. I finished rads Feb. 15, 2011. My chest is still tight and I should but don't do arm stretches every day. I usually forget. What Linda suggested is great. 4+ years ago I broke both my shoulders. I had PT for several months. Walking the fingers up a wall is good as is light weights raised overhead, to your side while standing and laying down. I do these when I remember. I'm still putting cream on my skin to keep it soft. For several months after sugery and occasionally now I get some sharp twinges that go away rather quickly. My surgeon had told me the twinges and tightness could last a year or more as the nerves, etc heal.
Char

lizzie17
Posts: 535
Joined: Nov 2009

and I still have tightness in the morning when I wake up, because I think I sleep kind of curled up. For me, my incision developed such scar tissue, and continues to enlarge and is so irritating, now they want me to have plastic surgery. UGH.

Findingout
Posts: 132
Joined: Dec 2010

Hi Nancy,

Since you do yoga and surfing you sound pretty active. After surgery I went swimming a number of times. At first I couldn't really do a full stroke on my affected side (had mastec. on right). But it would always loosen up as I did more laps. It was amazingly helpful for the tight, scarred area.

Now I'm in chemo and not swimming, but doing yoga and stretching. Nothing is helping anywhere near as well as the swimming did and I've gotten tighter again. The back stroke helped the most, but sometimes I just used a floaty in the warm therapy pool and did any kind of stroke. They were all good and I felt SO MUCH more normal while swimming.

I can't wait to get back to it. Hope this helps. PS - the swelling over the scar tissue also went down - way down. Almost gone.

Hugs,
LynD

hikerchick's picture
hikerchick
Posts: 21
Joined: Nov 2010

I had forgotten about swimming laps. I try to do as much activity as I can with our dogs, because we have so much fun together, I take care of multiple needs at once, and I get weight-bearing activity (my mother was practically folded in half by osteoporosis). I do have access to a pool. Thanks! I hope you can get back to it soon.

cheeto1
Posts: 4
Joined: Apr 2011

Hi
I am a Physical Therapist and was looking online to help one of my dbl mastectomy patients look for a better bra and noticed your query. I am an advocate of receiving manual therapy by a qualified person as soon as your tissue is stable enough to allow to help prevent severe adhesions from building up and preventing arm movement, neck movement and causing postural dysfunction. I have literally released tissue away from the ribs of my patient by gradual myofascial release techniques and of course, self stretching on her part. Let me know if this helps...abratun@yahoo.com

cheeto1
Posts: 4
Joined: Apr 2011

Do any of you who have commented have ideas for more comfortable bras that dont pull on your neck and shoulders so much with the prosthesis'??

cheeto1
Posts: 4
Joined: Apr 2011

Do any of you who have commented have ideas for more comfortable bras that dont pull on your neck and shoulders so much with the prosthesis'??

cabbott
Posts: 1046
Joined: Aug 2006

There are companies that offer bras with built in foam inserts that can be washed. You use them until they have to be replaced and then you replace the whole thing. I see them at Jodee (mastectomy bra mail order). You can get the catalog via internet. There are probably other places to get them, but this is the one I know. I have heard of inflatable protheses too, but only in a story where someone wore them on a plane trip and when the pressure changed it popped. . .well, I wouldn't recommend you go that route for obvious reasons. But a double mastectomy might find relief with the built in foam insert bras and insurance will probably pay for them. A cheaper route might be to purchase two swimming prostheses. They are hollow on the back but they fill up the mastectomy bra. The advantage would be that the individual bras are cheaper and can be replaced as needed while the inserts last for a few years. I would go to a store that sells them to try them out to make sure that's not too heavy rather than get a set by mail order. The built in insert bras would be the lightest and I think you could mail order them if you know exactly what size to get. The operators at Jodee's can talk you through the measuring part if you can't get to a sizer who is professionally trained.

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

I had an appt with a professional mastectomy bra fitter. We tried a few dozen styles before finding the styles that looked best. My prosthesis are very heavy and I don't wear them as often since gaining weight. I do however wear my leisure bras with the weighted foam inserts. Very comfy since I don't work outside the home.
{{hugs}} Char

dawnnadine's picture
dawnnadine
Posts: 3
Joined: Mar 2012

I have had chest tightness- like wearing a way too small bra 24/7 and having an elephant sitting on your chest- since my surgery. I have spoken with my surgeon; I have a weekly acupuncturist session and I hula hoop daily, swim a couple of times a week and take walks. My range of motion is excellent but the chest tightness is relentless. With no relief solutions yet from the professionals I have taken it upon myself to find something that works. (When I mentioned my tightness to the oncologist assistant he commented that while he did not think it was related to my heart ~ he insisted that I go to the emergency room for a heart work up. I know my body well and I know my heart is healthy so I politely told him that I would go to the gym. He was pissed but I went to the gym and had a great work out...no better way to relieve stress.)
Remedies- some that work and some that don't:

Heat pads~ felt good at times, but I ended up giving myself a 2nd degree burn.

Cold pads with heat pads over them ~ bingo! I used my 2 cancer camisoles and inserted a cold pack in the first one, then I put on the second camisole and inserted the heat pad.
I am wearing this funny looking outfit now- and have no tight chest and a bonus ~ I look like I have 36D bust (I am flat as a pancake and plan to stay that way ~ no re-construction for me~ I'm getting rid of stuff, not adding stuff to my body).

Pressure points ~ my chest was particularly tight on the long drive home from NYC last week. Fortunately a friend was driving so I was able to put pressure on a point between my non existant breasts. For some reason the pressure totally relieved the tightness in my chest. Now I need to figure out a way to always have the pressure there without having to walk around with my fist pressed to my chest...

And on St Patrick's Day the solution might be to add a shot of Tullamore Dew and a good beer to the dinner menu!

I am eager to hear from others regarding ways to ease the elephant sitting on your chest feelings and also how long it took for the tightness to diminish.

cinnamonsmile
Posts: 1052
Joined: Dec 2010

I had severe scar tissue adhesions after my bmx, too. I found two ot's that job shared that massaged my scar tissue and taught me some stretching exercises and simple yoga techniques as well. The massage that was done was not a normal massage like you would get. It is comprised of techniques to release the scar tissue. I have excellent flexibility as well, but it didn't stop the scar tissue adhesions. I still get tight feelings in the chest and wonder if I should go back for some more ot. Some women continue to have problems with scar tissue for some time. As far as how long it takes to go away, everyone heals at their individual rates.

dawnnadine's picture
dawnnadine
Posts: 3
Joined: Mar 2012

Are you talking about myofascial release massage? I have an appointment on Friday with a therapist who works with a lot of cancer folks on this so I am hopeful.

cinnamonsmile
Posts: 1052
Joined: Dec 2010

Yes, that is what I am talking about. And it worked wonders on me! I had it twice a week, an hour each appt. Hopefully, if it is scar tissue that will help. Don't be surprised if it hurts while the scars are loosening up. My therapist could tell where it was the worst, where it was better. After some time going there, I could even tell her where I felt tight. Hopefully the therapist will provide you some things to do at home. I was sent home with exercises, bands, and a styrofoam pad to put under my back for stretching.

I had my bmx with node dissection on 1/11/11. It has been over a year and I still have problems with those scar tissue adhesions. I still do my exercises, but mine are stubborn. My partner, Brian, is nagging me to go back to OT for more. I guess when it gets bad enough I will, but the wiser thing would be to go now....

I am glad you are going for that. It should really help you out!!!

dawnnadine's picture
dawnnadine
Posts: 3
Joined: Mar 2012

Hi Nancy,
How are you doing now- any tightness?
Dawn

VickiSam's picture
VickiSam
Posts: 8471
Joined: Aug 2009

So sorry to hear about your experience, it is one I, as well as so many bilateral
mastectomy Sisters know all so well.

What helped me .. was to apply frozen pea's wrapped in a kitchen towel on the
tight areas == maybe 5 minutes each area. Also, I used ibuprofen, or extra
strength Tylenol.

Quick question --- how often are you doing your exercises prescribed by Plastic
Surgeon and/or Physcial Therapist?

Have you called your Physician and asked for suggestions?

Sorry to say, it takes some time for our newly unformed breast == with tissue
expander's to cooperate and become one with our bodies.

Please let us know how you are doing, and feeling. We are here 24hours a day,
7 days a week.

Strength, Courage and HOPE for a Cure.

Vicki Sam

Clementine_P's picture
Clementine_P
Posts: 394
Joined: Feb 2011

Hi Nancy,

I too experienced worsening tightness over the year and a half post my mastectomies (with sentinel node removal) despite the fact that I am physically very active. I ended up telling my oncologist (only because it was morphing into significantly restricted range of motion in my neck) who recommended a person that specializes in exactly this problem. I have been seeing her about 2x a week now for the past three months and my situation has improved about 85% so far. She basically massages my armpit and scar area on both sides and has given me some stretches and exercises to do. This massage has worked wonders for me and I have been assured that in another month or so I should be 100%. She tells me that for the next year I should continue doing the exercises she prescribed to keep this problem from creeping back. I'm more than happy to continue on with my exercises though if it means being back to normal again with respect to range of motion and tightness.

Let me know if I can pass along her name to you. We may not be in the same area but maybe she will have a name to refer you to.

I hope you are feeling better,
Clementine

jimdeb86
Posts: 1
Joined: Mar 2012

Hi.
I had my BMX w/ lymph nodes and tissue expanders 3/10/11, radiation and implants (very sm) Dec 2011. I am currently doing PTO and I am down to once a wk. They are thinking I'll be ready for release by next month except I am really worried (scared) that it won't get better.
I have nerve issues on both my arms and into my neck. The scar tissue, hmmm, how much can you describe?? One therapist said that the reason my head hurts in the middle back is because the tissue connects to it and it's a very tender area. It's hard to believe that it affect so much and so that far from the main area.
I am NOT giving up by any means, but I am just really frustrated and am glad that others have the same problem and have some great ideas!!!

Thank you, Debbie

h023641
Posts: 1
Joined: Mar 2013

I am so blessed to have found this site. I thought I was the only one that felt like I was in a vice grip. You have given me ideas to loosen the attachment of skin to the chest wall and ideas for exercises. I am truly grateful. I'm disappointed that the doctor never said anything about this even being a possibility. I can crawl up the wall (with my arm) and raise it in fornt of me but this is different. I will see a massage therapist as soon as I can and in the meantime, thank all of you and the Forces that led me here.

cinnamonsmile
Posts: 1052
Joined: Dec 2010

Hi ho23641. I think you may want to see a physical or occupational therapist who deals with breast cancer issues or a massage therapist who is trained in myofascial release of scar tissue. I saw an occupational therapist to release my scar tissue. Even two years later I still have problems with it. I would not trust anyone that is not trained. An occupational or physical therapist would know what stretching and exercising that would work for you. Again, I think it is important to see someone trained to deal with these issues. I would not trust just any massage therapist. 

Have you discussed these issues with your doctor? Did you have a single or bilateral mastectomy? Did you have reoncstruction? How far out from surgery are you?  All these are important factors in your treatment plan. 

Please discuss you tightness with your doctor before you start going out on your own. It is always imperative to run things by the doctor first. I am sure your doctor/surgeon can recommend someone with experience that can help you.

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