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Friday, September 26, 2008 jeanfromNJ, Community Member, asks

Q: Have you heard of painful Radiation fibrosis one year after lumpectomy and partial breast radiation

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Answers (2)
PJ Hamel, Health Guide
9/26/08 5:27pm

Yes, Jean, that's a possible side effect, and it develops usually a year after treatment. Your lungs can be scarred by radiation; and your breast can become hard and sometimes painful. As far as I know, there's no treatment for this, save for painkillers. I'd speak to your oncologist or radiologist about it, see what the latest thinking is here. Good luck - PJH

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Seattle Survivor, Community Member
10/ 6/09 7:28pm

Oh good grief!  There is help.  I have pretty severe radiation fibrosis and lymphedema that developed slowly at first during treatment but has worsened one year post treatment.  I had an axillary dissection with radiation to the axilla and entire breast.

 

Get a qualified MLD (manual lymph drainage) therapist working on the lymphedema.  Also get a P.T. (physical therapist) to break up the fibrosis. Wear a compression sleeve daily and bandage also at night when needed.

 

My pain has been so bad I was taking narcotics.  I hope to get some relief now and going forward from the alternate treatments.

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PJ Hamel, Health Guide
10/ 6/09 9:39pm

Thanks for connecting here- and for your input. PJH

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Htressa, Community Member
4/12/10 9:53pm

My Radiologist recommended steroids which helped.  And to go into the oxygen chamber for wounds (the 1st part starts with a bxxxx oxygen chamber).  I'm praying this will give me some relief because this pain is unbearable and I can't and won't believe that there is no cure for Radiation Fibrosis.

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Clare, Community Member
6/19/11 1:12am

I've been going through the destruction of radiation fibrosis starting about 6 months after radiation for lung cancer ended and 7 months later I'm still in pain, taking pain pills.  I had lots of steriods and they were a great help with swelling, pain and appetite and just fluid in general. I can't take anymore (limits) and I'm losing weight from not eating very much. 
I've also had a surgery that released fluid from between my heart and the pericardial sac which has helped my breathing.  My fibrosis involves my breast, small areas of my neck and my back...a direct line from front to back from the radiation treatment.

Well I'm cancer free 1 year and 3 months after diagnosis, so any price I have to pay to be cacer free is not to big.  It seems there is not alot of common knowledge about this from the medical community, but I look at it this way--the medical community is so busy working on cures still, it's tough to spend lots of time treating side effects.  Let's face it--I have lung cancer and not many people are around to complain about side effects.  LUCKY ME!!

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Phyllis Johnson, Health Guide
6/19/11 9:41am

Clare, it's good that you can have a positive attitude about the treatment side effects.  You might talk to your doctors about whether there are clinical trials and/or specialists who deal with this problem.  I didn't have fibrosis, but I have learned from my own experience that the oncologists are focused on saving your life and sometimes don't have as much knowledge about treating side effects as other doctors.  Often it can take a year to recover from cancer treatments, so I'm not surprised that you are still recovering seven months later, but if you can find a doctor who knows more about radiation fibrosis, there might be something more that can be done for you.

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By jeanfromNJ, Community Member— Last Modified: 06/16/12, First Published: 09/26/08