Radiation Induced Fibrosis
I've just been diagnosed with early RIF post radiation. I went through chemo (4 DD A/C & 4 Taxol) and then finished 33 rad tx's in early October 2009. In early December over night I started experiencing problems and was dx with a breast infection. Started my first round of antibiotics. Now I'm on round 3 of antibotics and have just been put on a combination drug therapy of pentoxifylline ER 400 and Vit. E for RIF. My bs says I will be on this drug combo for minimum of six months. This is a shout out to anyone else out there having troubles post rads.
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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:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Here's a link to the clinical trial:
http://clinicaltrials.gov/ct2/show/NCT00583700
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
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I'm wondering if this what's going on with me. I finished rads in June, but have had several problems with "Bad Boob" Found a lump in Aug, had it biopsied in Nov, which was a B9 fibrosomething then this month got a breast infection, (I'm on round 2 of Keflex) another biopsy showing "Atypical cells" so my BS is going to excise the area next week. I had not heard of Breast Lymphedema. Thanks for the post!
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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
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Hey Connie...I wish I knew how to respond to you...I wish I could make things better....and maybe it will get better? I certainly hope so! I don't know..I had the same treatments as Betsy and yet haven't had any issues...yet..is the key word here...I guess I know now what to watch for...I guess I never thought of rads as the culprit to people's SE's...I thought that most of them would be from chemo...now hearing this stuff from rads..well it scares me...we have all done it..and there is no going back...the oncs DO tell you that things can happen but they are rare....They have got you..in a sense..do rads and have se's or risk having the damn cancer come back..do we really have a choice.at that time of our lives..making that decision well..it really wasn't a choice..we just did it.
Lots of hugs to all of you...I don't know what else to say except it sucks...CANCER SUCKS.
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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
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HI Connie07
When I was diagnosed with mets to the spine in my second recurrence the first suggestion was radiation. When the rad onc explained how she would radiate from the 'front to the back' ie through my heart and lungs - I said 'no thanks'. We argued - and I said - OK - but I am not signing your 25 page disclaimer - if it is THAT safe - you don't need me to waive any right of suing later- hmmmm she got her revenge by making me see the hospital shrink because of my bad attitude - they wouldn't let me leave until I appeared more reasonable!!! Oh well - I still refused the treatment and the mets responded to hormonals (lucky I know) but I was just so not convinced by her proposal ....I am sure radiation has its place and one day I may need it - but the longer you can hold off the better - and they should really have warned you about the distressing and debilitating SEs...as for why any of us get this terrible disease.....I don't think there is a reason - and one day when there is a cure - that question will no longer torment our lucky descendants (or maybe even lucky us
Hang in there
Fidelia
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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".
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Fidelia, did your onc say why she was radiating through your heart and lung instead of through your back? I always thought spinal rads were directly to the spine, not through tissue - especially heart and lungs.
Leah
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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
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Connie..you don't have to explain that you are usually very nice..I'm sure most of us are very nice, but a cancer diagnois blows that niceness crap away..you don't have to be very nice..especially HERE...You can say what ever you want..and you have a right too..if you said it to anyone that hasn't been through this..well they just wouldn't understand...niceness be damned..scream, yell, whatever..we know what you are going though..because we are going through it ourselves.
And Kira..I agree that 99% of rad oncs are very, very careful...mine was a sweetie and so were the techs and they did an aweseome job..I have no complaints and was lucky enough to have no se's..at least at this point...my rad onc was Chinese and had an accent and kept asking me a million times if I had any questions..I loved him..and the techs...if it wasn't for the freaking reason why I was there I would have to say it was an almost pleasant experience...but not everyone experiences that...my mom was pretty much fried..but they took care of her well..but she did say that she would never do it again and would rather die than go through rads...and she means it!
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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.
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Geesh...Connie you sound like you have been on a ride. (not a good one). Sorry to hear thing have been so difficult for you. I've had lower back pain before but nothing like you describe. At least we can all relate about "caner sucks" as Titan put it and how it has dominated our lives over the past year.
My breast pain is on again, off again. I just finished my third dose of antibiotics. I'm hoping it will feel good for at least a week before everything flares up again. I plan to enjoy my week.
The strange thing is I'm noticing little red dots on my skin in very strange patterns. I think I may call my bs tomorrow about it. It is new since I started the trental. Is anyone else on trental? Or am I the lone ranger?
Betsy
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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.
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What are the symptoms of RIF? I have pain in my chest wall and under my arm. I have developed fatty cysts under my arm. Since I had bilateral lumpectomies, reconstruction and radiation with a diagnosis of DCIS, I never felt lumps until now. I am very uncomfortable and anxious about the pain. If it is radiation induced fibrosis, I need something to take to my PCP so he will know what to look for. I have anxiety disorder so I need some proof of something besides anxiety! I have not heard of this before. I usually think I am just crazy and then realize what I have been through. God bless us all,
Beth
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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.
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HUGS to you Connie and all the other BC Survivors. I felt like I had written your post. My question is how did you find out about the diagnosis of RIF. I finished Accelerated Partial Breast Radiation Therapy in May '08 and have been miserable since Sept. '08. Seems one issue would go away and another showed up in it's place. The latest has been lingering 18 mos. The first I had heard about RIF was from my new family doctor. I hope you are on the road to recovery and have excellent health care providers working for you. God Bless
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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
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So glad I found this thread. Now I realize that I had RAF; Radiation Induced Fibrosis. It lasted 7 yrs at which point I elected to have mastectomy. I'm not at all saying that I had it as badly as many of you; but the docs were very covert about this. I cannot tell you how painful breast exams and mammos were on that side. A woman should not have to cry/vomit/nearly pass out from a mammo; esp when the other side was no big deal. My speculation is that it was so bad that I could have sued; hence the medical community kept me in the dark. I really was made to feel like I was being a wimp; and of course lucky to be alive.
I can hug people now that the breast is removed. I am so sorry to hear of all you ladies have endured and continue to endure.
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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!!!
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I hear you all on the frustrations of symptoms after the fact. My doctors so far, although nice people, prefer to not discuss anything that 'might happen', their theory to get us through this as quickly as possible and keep all the fingers crossed that none of the typical side effects happen. I'm beginning to think that the side affects are more the norm rather than the 'odd' occurance like they state. I hate that condescending attitude after all we have been through.
I have 11 rads left and the arm is weakening, the underarm is very sore, along with the boob, which looks a mess. I'd like to know HOW BAD is BAD? I've had some really bad side effects from both chemo and rads. [and I'm usually pretty tough plowing through things]. I also am worried I won't be able to continue my photography which requires alot of 10 lb. lifting with that arm. I really feel like a neglected cow shuffled through the cattle farm. We are all numbers, doing this to our bodies to beat the odds, and it sometimes seems like a torturous trip down main street with no promise in sight. So barbaric! I worry about the disabilities, the heart, the infections, the future and lately, if next year they will change their minds AGAIN about the benefits of radiation!
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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
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deanne; just a suggestion that comes from my own experience with RIF. The mammo was so painful as I knew it would be. So I then insisted on pain killer for subsequent mammos. I'd get two tabs of Tylenol #3. It took the edge off the pain. I should have trusted my instinct b/f the first one but the docs acted like it would be fine. Best wishes to you!
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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................................"
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I was just diagnosed with Radiation Induced Brachial Plexopathy. I also have scarring in my lungs from radiation damage. I also have lymphedema. Cancer sucks. I have had neuropathy from taxol for 12 years.
I also feel like my doctors are all like, well wow your still alive. yeah, but looks like I may end up with a right arm that works correctly?
grr. depressed, 39 years old
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I’m being evaluated by a pulmonologist next week to see if this is what’s going on with my lungs.
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I was so inflamed towards the end of rads that I begged my RO, isn't there ANYTHING you can give me to assist my breast healing? This inflammation feels extreme/not healthy, and I do not want to end up with lymphedema or other long term effects.... He prescribed the Pentoxifyllin and E combo, and I began it during my final week of rads. He has me on it for 30 days... I am healing well and my breast feels ok but I still get a few zingers. I am 2 weeks out from my final rads. Skin is 90% well now. No more heat. For people reading this in time, ask about prophylactic meds...
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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!
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mic96, Has there been any improvement? I was diagnosed with arm and hand problems myself. I’m starting 0T and I am also going to PT. The PT has helped my arm but my hand especially fingers are pretty useless. Radiation induced peripheral neuropathy they call it. Do you have any recommendations?
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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.
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I was so glad to finally find some info on breast fibrosis. I finished rads in December and have been miserable since my lumpectomy last April. I had 2 large seromas that were finally drained in January, I also have lymphedema in my breast and quite a bit of fibrosis. I am just now getting treatment for the lymphedema and taking meds for the fibrosis, along with wearing compression bras, doing manual drainage and also using a TENS unit to try and stimulate the lymph fluid to move. The fibrosis has spread to my rib cage and goes all the way to my neck. The side of the breast is also puffed all out with the hardened tissue. I went through chemo and compared to all the SE of radiation, chemo was a breeze. At least that was over with after awhile. I've been told I will have to deal with this for the rest of my life and my best I can hope for is that it may eventually get a little better. Sorry this is so long, but it's a comfort to know there are ladies out there that understand.0