Topic: Radiation Induced Fibrosis

Jan 21, 2010 05:38PM kira wrote:

Betsy, it's good that they put you on the drugs, there's a clinical study using them right now, to try and prevent RIF.

Do consider the fact that the RIF may be causing breast lymphedema which could contribute to the cellulitis issues, there is treatment for it:

www.stepup-speakout.org/breast... 

Here's a link to the clinical trial:

clinicaltrials.gov/ct2/show/NC... 

A woman on the lymphedema thread has breast/trunk lymphedema, and Andrea Cheville from Mayo Clinic put her on the trental and vitamin E.

Hope you get relief soon.

Kira 

Jan 21, 2010 08:55PM Connie07 wrote:

Since finishing rads over 2 years ago, I am floored at the vast array of stinking symptoms and side effects that continue to bombard us. I remember, as a kid, knowing that radiation was a bad, bad thing. Yet they introduce it into our bodies as a healing and preventative measure. They never went over any of the awful-ness that happens for years after radiation treatments.

I have had all clear mammograms since the surgery and radiation. Until this past one in November, it showed a cyst in the 'scar' area. A Necrotic Fatty Cyst. Then, maybe because I knew it was there, it began to hurt. It began to feel harder and harder. I asked, BS inserted a needle and drew of fluid. Just fatty she said, nothing weird, and, "it's from the radiation". Like it was what we all had for lunch. Then the area began to turn pink, then red, she needled it again and then did a punch biopsy. Two rounds of antibiotics and a yeast infection from hell. On the Wed. before Christmas, so I had to wait throughout the entire Christmas weekend for B9 result. Harrowing.

boob still hurts. I protect it. Can't lie on that side. Have developed some lymphedema. And time after time after time, I remember that rads onc, when I would see him at the end of a week of rads saying, "see?, this is ALL we are doing to you".   ALL??? All my ass. If I'd had a clue that this crap would still be bothering me on a daily basis... all from the rads. I would have refused it. After reading a lot of posts in this site, I believe I would choose mast over lump&rads again.

I always said, if they ever told me one of my breasts was sick, I'd say, cut that puppy off. But the reality came and they said they probably got it all in the original biopsy and the lumpectomy had clean margins the first time. I think the rads treatments were horrible to experience, miserable to have them in the late summer in the deep south, being of fair skin, I burned like MAD. Blisters the size of quarters under the breast and under the arm. I cried every day. And frankly, the idea that they cut my breast and took a hunk of it out completely freaked me out. I promise to be a complete basket case if they ever want to take more. It's taken me this long to come to terms with the little bit they took. To look at myself in the mirror, naked, again. To not cry every day.

Another friend has fibrosis on her lungs from the radiation. Others have Thyroid problems, from the radiation. I also have severe bone and joint disease up and down my spine - you guessed it, from the RADIATION.  And we PAID them for this?

Emotionally distraught, financially destroyed, physically disabled, exasperating fatigue. BC blew up my life. 

~Connie

Jan 21, 2010 09:52PM Connie07 wrote:

Hey Titan, That's SO true. They are the ~DOCTORS~ the ones who know all, and treat all, mostly all the same. They lead us to what they want to do to us. Or what has worked for others. It's so non-personal, keepin it clinical. Yet deeply personal to us. I suppose it's impossible to second guess our decisions, once made. And having made the decision to accept the radiation treatments as a preventative, I reckon I need to get over it.

It's just that according to my left breast, it's not over. It shrinks, it swells, the pink is going away, finally, I had the cyst aspiration on Nov. 12, so it's about time.

I know I sound very cynical when I write in here. I'm not that way, really. I'm usually very nice, southern hospitality and smiles. It's just maddening and frustrating and every single day something reminds me that I had BC. I keep telling myself that I "had" it, it's gone. move on. But it really did blow up my life. Maybe, in the Divine plan of it all, I needed it blown up. Maybe one day, I'll know why I'm the one that got it, or why it's all affected me so harshly. Maybe.   I'll keep reading and writing and if I ever find out I will let you know! Hows that?

Thanks bunches for the hugs. Yes, I'm on that bus...CANCER SUCKS.

~Connie

Jan 22, 2010 08:39PM BetsyBuzz wrote:

Wow...I am shocked that in one study I read that more than 25% of women develop fibrosis post radiation. Why don't they warn us about it? Not that it would have changed my approach to my care.

Fidelia - I am also appalled at how your rad onc treated you. It's your body and your decision.

One more note...I've always viewed doctors as not "all knowing" and it's within our rights to question what they are saying. I think that's why they call it a "Practice".

Jan 23, 2010 06:15PM kira wrote:

Found another reference to using trental and vitamin E for radiation fibrosis--it said it worked best on people who were less than 6 years out, and that stopping the drugs early--they did 6-12 months, caused a flare

http://jco.ascopubs.org/cgi/content/full/23/34/8551

Fidelia, I work for a radiation oncologist, and he's very, very careful in how he plans his radiation treatment, to avoid healthy tissue. Unfortunately, he was not the person who gave me radiation, and she was not nearly so careful--she was a big minimizer--"Why are you worrying?" Many, many reasons...

Kira 

Jan 27, 2010 08:32PM Connie07 wrote:

It DID - BLOW UP MY LIFE- and I was doing pretty dang well, all things considered. I worked at an Arts college for 18 years and I liked my job and loved my benefits. My kids were offered tuition rides and 2 out of 3 took me up on it and graduated. Then I applied, got accepted and was going to start on my arts degree when this happened. BC, surgery, rads in summer (heinous) then for Christmas I had an emergency appendectomy. Emergency, my ass. I'd been having the same symptoms for MONTHS before the BC and they told me to put it off, wait til the rads is over. then all of a sudden on one day, one doctor turned it into an emergency and 8 hours later I had a separated appendix and four new scars. Healing, taking a second short-term leave, I fell. Five different specific times. the last was the worst, landing on bricks downtown. My PCP kept blowing me off about my back hurting, wait 6 weeks, wait 6 more. do an x-ray, nothing broken, wait,wait, wait. After waiting 7 months they did an MRI. the back doc MISSED it in my neck. 3 more months, feeling like a complainer, 2 unsuccessful ER visits, finally I get to see a Neurosurgeon who opted for cervical discectomy and fusion. I felt vindicated and violated at the same time.

During all that, I lost my job, lost my sense of personal achievement, damn near lost my marriage. The dog died, my best friend died and then my Daddy died. depressed? yes.

There's still pain in that breast, and it's disfigured and I hate it.  But life goes on. And I'm still here. And we became grandparents for the first time!

The breast cancer haunts me daily and it's very scary thinking that I have two sisters, daughters and neices and some of them will have to deal with it too. Hopefully, before that happens, there will be lots more research and THE DOCTORS will be more considerate. But with the way health care is not reforming in the USA. I seriously doubt it.

Feb 24, 2010 11:20PM BetsyBuzz wrote:

Update - on my 4th round of antibiotics now. No end in sight. I have a BSGI scheduled for Monday to see if there is anything, ie cancer, lurking.

Mar 6, 2010 08:20PM BetsyBuzz wrote:

Beth,

I had chest pains in my pectoral muscle, tightness in my axillary lymph node area, a red swollen breast (about double it's new normal size) which felt hot to the touch. No tissue openings and no lumps. Basically, from what I understand, it's tissue damage that does not heal correctly and can harden over time causing pain and discomfort. I don't think mine it actually RIF yet. Maybe I'm just showing early signs of it. The one thing all the articles I've read have stated if you see your bra lines clearly...that's a common symptom. When my breast swells, they are as clear as day on my body and I'd never seen them before my infection was dx'd. 

I do have a lump that has developed but none of my oncs or my bs seem worried about it. My med onc said it was scar tissue from my lumpectomy. It can be a little tender but it's not bad. Have you been stretching or exercising? I fine it really helps. I am following the "Thriving AFTER Breast Cancer" book by Sherry Lebed Davis. It has some good exercises in it. A very gentle approach. Hope that helps.  

Jan 8, 2011 12:54AM charmainejensenvoisine wrote:

Hello Ladies,

Not quite certain what is going on with me, but I am most certain it has to do with radiation therapy.

I had 30 sessions of radiation therapy, and I finished March 31, 2010. ( 4 chemo treatments) 2 surgeries.

About 5 months after radiation therapy, I discovered my right arm the side that I had the lumpectomies on - that I cannot raise my right arm straight up and back in a normal motion as I can the left arm (in otherwords motion with the right arm is limited).  When I try to raise my right arm straight up, I feel a tightness down my upper arm and also often I get pain in the ball of my shoulder.  Also when I try to raise my arm I feel some sort of swelling appear in the pec area of the chest..

Charmaine

Jan 11, 2011 09:52PM marymoir wrote:

Betsy -- I know this is an old thread, but your story is virtually identical to mine, and I'd love to hear how the Vit. E et al. worked for you.  I'd never heard of RIF until coming across this thread, but I have been Dxed with truncal lymphedema -- my LE therapist & BS think it's a combo of radiation following my lumpectomy/chemo fun, plus cellulitis that I developped following a core biopsy last year following a suspicious mammo (plus a trainer-from-hell whom I let push me into doing too much/too soon with my upper body weight workout). 

 My LE therapist has been tryihng to break up what she calls "adhesions" and scar tissue on my pec/serratus/shoulder muscles.  Would love to know if your treatment helped!!!

Jan 14, 2011 09:23PM Deanne61 wrote:

Hello Ladies,

Just want to say that I appreciate all that you had to write on this thread. It has helped me to formulate some questions at my next BS appointment concerning RIF symptoms. I started with the soreness, tightness,swelling, reduced range of motion, etc.. about two months after completing radiation in September. In December my oncologist didn't seem too interested - suggested PE only. I am already concerned about how much the mammogram is going to hurt in March (first follow up mam )with all of this tenderness. I too wish that Dr.s would have been more forthcoming with these later side affects! I still question whether I should have had bilateral mastectomies vs bilateral lumpectomies/radiation. I really don't think you get the full picture to truly decide what is best to do. I burned pretty badly during radiation and now have these problems too.  I suppose I am one of many..........here is to better days ahead!

Thanks again,

Deanne61

Feb 27, 2018 07:09PM - edited Feb 27, 2018 07:58PM by lionessdoe

Edit: This was supposed to be a reply for ConnieO. I am ten years out as of March 17, 2018. 37% of patients having radiation over the lung or lungs can develop Pulmonary Fibrosis ten years after. Although, I came along this statistic years ago, the overlapping diagnosis of Radiation Induced Brachial Plexopathy and Lymphedema can obscure any additional underlying "Side Effect" (SE my ass). I am currently being evaluated for Pulmonary Fibrosis. Chest Xray shows lesions in upper part of my lung. CT scan to be scheduled next. The symptoms I have long been experiencing, I personally attributed to my other two post RAD conditions. No doctor til now thought to even look. Least of all me. I just want to add my voice to yours and scream from the highest mountain 'Radiation and Chemo, the gifts that keep on taking'. The last ten years of my life have been a living hell. If a bundle of nerves, deep beneath the clavicle can be destroyed by radiation, then why wouldn't soft lung tissue react the same, or worse as well? My skin did not just turn red and itch. It became black and sloughed off, literally. I agree with every word you said. The denial from Breast Surgeons, RAD doctors and Oncologists is appalling. I guess it's more important to them to believe that they saved my life than it is to believe me when I try to say "Yeah, but................................"

Apr 3, 2019 12:41AM KBeee wrote:

I’m being evaluated by a pulmonologist next week to see if this is what’s going on with my lungs.

Apr 12, 2019 12:36PM mlc96 wrote:

I was diagnosed with radiation induced brachial plexopothy a year ago. The doctors are content that they at least made a diagnosis, but nothing offered for treatment. I've done arm and hand PT/OT but not much difference. I was right handed, but had to teach myself to write with my left hand. I otherwise feel like a toddler, as I need help buttoning my clothing, tying my shoes or cutting food. I'm struggling to keep working, but most days I just want to stay home and rest!

Aug 29, 2020 05:45AM Sularyan wrote:

Hi there. Hope you are doing well. Am going through the same and on same meds. How did the pentoxifylline and Vitamin E work for you. I hope well.