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radiation induced fibrosis

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bbbboots View Drop Down
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    Posted: Nov 15 2012 at 7:54pm
Anybody having trouble with radiation induced fibrosis? My tumor was almost on the chest wall so mastectomy left me with a big concave divot. I had hardly any tissue to absorb rad and it damaged the muscles and tendons. I am losing range of motion in my arm and shoulder. The tissue in my armpit and across my chest is very tight and hard. I am getting myofacial release PT and it seems to be helping some. Any ideas? I do not have frozen shoulder - confirmed by PT - and I did my exercises faithfully following mastectomy. This started happening 8 months following surgery and 3 months following rads. I did have a huge ugly seeping burn. Thanks.
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dx10/11, triple neg, grade 3, stage 2B, multifocal, mastectomy, chemo, rad   
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2013 at 11:46pm
bbbboots,

Sorry to read of your radiation induced fibrosis. Hope things are getting better.
Apologize for the delay in posting a response

No advice but some thoughts/considerations did come to mind:
        Would a second PT consult be something to consider?
        Can your surgeon or radiation oncologist recommend a PT who specialized in post breast
                 cancer/radiation PT?
        Sometimes different PTs can approach a condition with different treatment plans.
        Or it could be you are already with "the post breast surgery PT expert" in your area.....
               or as you said your current PT is helping and it might be that PT and more time is needed
               to see/feel results...........in which case disregard the following.
       
If your physicians do not have the name of a PT expert in post surgery PT, you may like to
consider checking the APTA website.
The American Physical Therapy Association (APTA) has a website and "Find A PT" page.
http://www.apta.org/apta/findapt/index.aspx?navID=10737422525
Thinking you could try to find a "Cancer" PT in your area......or closest to your area. If there is not
    one close, you might call the closest. They might know another PT closer to you.   Also, you may
    like to consider finding out how many post breast surgery patients a year the PT sees......and the
    type of results achieved.

Maybe someone who did not see this thread when first posted might have something else to add.


With caring and positive thoughts,
Grateful for today..............Judy       
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Annie View Drop Down
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    Hi Boots, So Sorry I missed you post. Yes, I am having a great deal of trouble with shoulder, arm and chest problems. The chest area has a great deal of fibrosis due to scar tissue and Radiation Therapy. I am seeing a Certified Lymphatic Massage PT and I also have Lymphedema in the Truncal (chest and back) If your PhysioTherapist is not Lymphatic Certified please find one. You need an assessment from one who sees this kind of damage and knows how to massage correctly to provide flow of the lymph vessels which will also help the fibrosis. They are not that many Certified and you may have to travel but it is worth it. They know the disease process very well.


              I was attached to a wound vac after my Mastectomy as I had to have another surgery two weeks after due to hemorrhage(sp, sorry not awake yet) so they put that in to drain the wound. I was attached to that and a pump for 7 weeks. It did leave a smallish indent in the chest area and added to the lymphatic problems and fibrosis. My chest is extremely tight. I am on restricted movement and my 3rd treatment starts today. I have to go shortly to that appt. but will pm you soon...I know how you feel...Love, Annie

Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Weshallsee Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2013 at 1:34pm
Sorry this is happening to you too!  I was just diagnosed with this problem too, they originally thought it was frozen shoulder too!  But I recently had surgery and my PT/LANA Certified arranged to check my range of motion under anesthesia and the doctor and her determined that my shoulder, chest, arm (limited range of motion) is a direct result of radiation fibrosis.  I recommend seeking either a physiatrists (a doctor that specializes in rehabilitation and works closely with the PT and lymphedema specialists.) or even better if possible going to a large medical center where they provide rehabilitation services for cancer patients. It is better to have a team of specialist putting their expertise together to create a medical plan for your particular condition. 

I had a mastectomy in May 2012, then July 2012 radiation, less than a month after radiation I started having problems with my chest, arm and shoulder.  I had very little range of motion. I have switched PT's until I found my current one at a major medical center.  This place has an aggressive cancer rehabilitation program and I have seen some progress. 
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       Thank You WESHALLSEE, I am being seen by CLDMT who has been also recommended by the larger group based centre in Ottawa. You do bring up a good point that I may consider for an interim assesment by them at least. It is an hour away but I think I will do this. Good Luck with your progess in this and thank you for your suggestion...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Big smile Dear TNBC sisters:
 
Thanks to all who answered my request for info about radiation induced fibrosis.  Sorry to be so late in extending my thanks.  I somehow messed up the computer and was unable to access the forum. 
Many of you mentioned lymphedema.  Fibrosis and lymphedema must go together as I also have(upper arm/truncal).   It started about 2 wks after mastectomy, then got really bad during and after rad.  I had the lymphatic drainage massage for a while (by a certified expert, thank goodness) and it helped.  I have a compression sleeve.  I find it comes and goes, but has never been as severe a problem (in terms of pain and movement restriction) as the fibrosis. 
 
I am still getting PT wkly for myofascial release.  It seemed to help a lot initially, but then it reversed course.  I find the area is very touchy.  I do lymphedema exercises everyday, but can only do 10 reps.  Some movements hurt even if I do them only once (reaching above my head, putting my arm back to put on my coat).  Other movements hurt only if I do them repetitively (sewing, chopping food, folding clothes, etc.)  I went to see a rehab doctor who works with cancer patients.  She bluntly told me (that is fine with me) that my range of motion would likely improve, but would never be normal.
 
I know at times fibrosis can not be avoided, and I am glad to be alive.  But I just would like to know 3 things: 1) I love to swim.  Has anyone been able to go back to swimming?  I tried a little last summer and had terrible results; 2) I used to scuba dive.  Any mastectomy scuba divers out there? Did you wear a swim prosthesis?; 3) What do you do about CPR?  I know I can not do the repetitive movements.  I need to be certified. 
 
Thanks again all my TNBC friends.  This is the only forum I participate in, as I feel we walk such a different path.
 
bbbboots
IDC, stage II A, Grade 3, multifocal, 1 site 2.5 cm, 2 others less than .5 cm, mastectomy 10/11, 1 node positive, 8 rounds chemo 11/11-3/12, rad (33 tx) 03/12 - 05/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 5:58pm

     Hi Boots,     It sounds like you have made improvements. That is good.   I am in pretty bad shape with the fibrosis and brachial nerve problems... painful, going up my neck. The fibrosis is especially bad in the upper chest and rib area.   I agree the fibrosis is SO much worse than the truncal lymphedema although I am told that the lymphedema, mine is improving does add to the whole picture of pain...

               I had a bone scan last week and have not heard so everything is probably okay.

               I think I will also ask to been seen by someone when my next onc. appt. comes if I can wait until June...do not think so...Last week the therapy seemed to make things worse so I did not go this week but now am in really terrible discomfort etc. I feel exhausted from it all. I have not had too much problem with the range of motion... not what it should be but everything causes pain...I moved shortly after the mastectomy and would not advise it...


                  I am supposed to be fitted for a compression bra after treatment...Did you have tingling down your arm into your fingers...am on anti-inflammatories...too soon to tell if they are working.   Did your compression sleeve help with pain at all...would love to know this.

                  I could not swim if you paid me, and CPR wow that is going to be tough...best not to do it until approval from you PT...It has changed a bit since I took it. I am not sure now how many compressions at a time now but I am sure it is still quite strenuous.


                  I have a hard time driving a little and should not be typing either I guess...


                  How did the myofascial release help. Thanks for you input if you have a chance, really appreciate it...take care...Love, Annie

Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bbbboots Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2013 at 3:05pm
Confused Dear Annie (and any other rad fibrosis sufferers):
 
I decided to search the net again to see if I could find out anything.  After several hours, I found something on a Website called Medscape.  It seems to be a legit site (although I don't know who uses it or who is behind it).  I searched it and found a section entitled Cancer and Rehabililitation.  There I found an article entiled Radiation Therapy and Its Consequences.  The authors are two doctors, Justin F. Black and Robert H. Meler III.  I started reading it, and was encouraged because it addressed radiation side effects in detail.
 
Then I hit the mother lode.  The sixth paragraph is about something called radiation-induced brachial plexopathy.  The symptoms are shoulder dicomfort, progressive paresthsias (tingling, prickling, stinging, stabbing and a feeling of heaviness) and weakness in the arm and hand.  Read this Annie, and see if it describes what is going on with you.  It sure does with me.   Like you, I have parathesias all the way down my arm.  They can occur out of nowhere or can be brought on by touch.  I know my arm is weaker because I have touble doing my lymphedema exercises on that side.  And I think we already covered pain. 
 
This diagnosis explains so much.  I kept telling everyone that I was having both aching type pain and stabbing type pain.  I said some of the pain was the kind of pain you would get from pulling on a tight muscle (the aching pain) but the other type of pain (the stabbing kind) seemed to be neurological.  I do remember my rad onc saying that he thought I was having some neuropathy, but I did not think too much about it because I thought he was talking about the neuropathy you get in your feet and hands from chemo.   The stabbing pain can be awful - it feels like someone is stabbing me in the back of my arm with and ice pick. 
 
Unfortunately, the article says no treatment is known other than symptomatic management.  Boo. However, it also says that the symptoms can mimic a cancer reoccurance, so it should be checked out carefully.  I must have a good rad onc because he already told me this and ordered a CT of chest (done and was clear).
 
Sorry to be so wordy, but this info may be helpful to any one else having the problem.  I am taking CPR this weekend so I will see how that goes.  Thanks again my TNBC sisters.  I'll sign off with some good newsClap.   I met a woman who is a 14 year TNBC survivor.  YAY!
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2013 at 5:46pm

Hi Bbbbboots, Love your name by the way!

               Yes, I have been diagnosed with brachial plexopathy. Thanks for the website, I will check it out. The numbness and all you describe especialy the brachial nerve symptoms are problems with me.

               I went out yesterday and just having my arm downwards a geat deal of the time increased the pain I am having today terribly.

                 I am hoping the effects of the anti-inflammatories will begin to occur soon.

                 I was told no heat but noticed after coming out of the bath again I had some relief...

                  The fibrosis I developed was not just due to Radiation but compounded by multiple surgeries, tissue damage from the chronic cellulites, the placement of the wound vac in the open incision I had. I do not want to frighten anyone from Radiation. I had an unusual set of circumstances occur. Less than 1% of people go on to have this degree of Cellulites...so do not be worried. It is rare.

                  Yes, a possible recurrence was checked out with me. I had several x-rays and a bone scan done.

                  Here is hoping you get certifed with the CPR and thank you so much for looking up and finding the website.    I find typing really difficult at times. Love, Annie



Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Dear Annie and Triple Neg Sisters:
 
Thanks again for all your assistance.  Sorry have not responded for a while - have been very busy taking volunteer naturalist classes.  Annie, I was glad to read that you have been evaluated for a possible reccurance.  At least that has been ruled out for both of us (for now).  I felt validated when I read that you had been diagnosed with brachial pathyplexy - at least I am on the right track with my do-it-yourself diagnosis. 
I am so sorry, Annie, that you have suffered so much - lymphedema, fibrosis, pathyplexy AND chronic cellulitis.  I feel as if I have nothing to complain about.  What a drag.  It is like you exchanged one disease for another.  Oh well, at least the second one will not kill you.  The trick for us both is to find out how to live with it. 
To that end, I was doing quite well and thought I was through the worst of it.  Of course, it came back.  I have had serious epsiodes of pain at very inconvenient times (like when in class or driving or sightseeing or doing field study).  At times I can't lift up my binoculars or drive because the pain is so severe.   I seem to have 3 distinct kinds of pain: 1) Aching pain like a muscle strain; 2) Sharp pain like a muscle cramp; and 3) Sharp stinging stabbing pain like electrical shocks.  The pain can be either/or in my left chest, shoulder, back, axilla and arm, or E, all of the above.  It is very frustrating because it occurs inconsistently.   I know some things will pretty much always bring it on (like reaching up high, reaching behind and/or moving my arm repetively) but otherwise, it seems to occur randomly.  It is very distressing when the pain keeps me up at night and/or when I get afraid to use my arm at all.  I am afraid my arm will shrink up and contract and become useless.  I am seeing a massage therapist (on a cash self-pay basis) for scar moblization, but otherwise, have no idea of what to do.  I was on vacation recently and had a terrible episode.  I felt like a burden to my family. 
Annie and others, do you have any ideas?  I am open to traveling to get some help, but don't know how to find out if nearby big famous treatment centers (1.e. U or M and Cleveland Clinic) know anything about this.  I don't want to waste money and time going somewhere only to get the same answers I have gotten before (take Lyrica to decrease pain, otherwise nothing can be done).
Thanks in advance for any help you can give me.
One gone but still strong,
bbbboots   
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 5:55pm
Good to hear from you bbbboots,        Sorry you are in the same situation as I am.
                                    From what I know this is probably going to take a while...what I was told by the latest physiotherapist I saw...a long while. Not to mention the as you say particular movements that exacerbate or bring it right back...so frustrating.

              I too find driving a real problem with causing the pain and especially the tingling in my hand. The fibrosis seems stubborn and I can hardly ever sleep on my left side and if I do I have to turn over or I will be in much much worse shape in the morning.

              I did find the massage very very helpful and the lymphatic drainage. I was to have some treatments for that last week but came down with a bad strept throat. My shoulder is now getting very stiff again. I think a good treatment is the massage and if she teaches you how to do it yourself on those tight fibrous areas as well as massage the lymphatics as mine did this will be a benefit. This I do on my own with some very good relief. The massage on the back area really helped and the massage therapist used ultrasound once to my shoulder it was so acute...really helped.

             Do not be discouraged I think we will be working on this for a long while. I also find typing to be difficult at times and well I have just about given up trying to lift anything of any weight with my bad arm as well as try and use it to any degree weight wise. I have tried to add slowly but without too much gain. I did lift a larger planter of mums this summer onto my deck and that set me back.

           I would encourage us both to be very discerning with the use of our arm and chest area until some at least moderate degree of healing takes place.
           I think you are on the right track with the massage but it would be good to have an assessment with a physiotherapist one trained in oncology rehab. It is good to work with both with this condition I am told. That is where I am right now in physio.

           All the best to you and also some oncology clinics can refer to some very good rehab clinics locally so maybe ask around for that through your oncologist. You could also call local physiotherapy clinics and ask if they have anyone trained in oncology rehab especially for breast cancer.
           I do not think the arm will shrivel up...we are using it, just not the way we would like.

           Take care and keep me posted...Love, Annie



Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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