Radiation scarring

Mama G said:

Is tally Tallahassee?
I was told the same as some others who have replied. The are as careful as possible to NOT do any damage to either the lung or heart. HOWEVER, my skin is really burning (as in sunburned) and not even in the area of radiation! My shoulder and back are getting the brunt of it. They call this "scatter" and I don't like it! Anyone have any clue what to do about it?

71 year old vigorus male, 9+ years ago I learned I had Throat (Tonsillar) Cancer, stage III B, course of treatment Removal Operation, Chemo, Radiation, Came through like a champ. No One told me that Raditation would wreck havoc on my Thyroid, to take Iodine while receiving Radiation. 5+ years later, Thyroid damage, have to take Levothroxin the rest of my life for the damage done. No on told me about Radiation Scaring. 8+ years after treatment Radiation Scaring set in effecting all the soft tissue of my head and neck. The pain is "KILLER" I wouldn't wish this on anyone, even Obama,, Any Cures, Any Remedies Out there, HELP! 

I never heard of that..I"ll check back for an update

rsjc1994 said:

Radiation scarring

It has been 24 years since mastectomy and radiation. I had severe burns from radiation. A few weeks ago my scar started seeping clear sticky liquid, and forming scabs. Has anyone else had this? I do have a Dr appointment on Tuesday but am concerned.

My RO told me that the damage from radiation often does not show up for years and at one year out, it was too early inth orocess to know what the long term damage would be, including damage to my lungs and ribs. I hope you see your doctor soon. I don’t take any medical advice from technicians, as they are not trained in medicine.

my last rad was April 10,2018.  Mid June I developed a dry cough.  Didn't think too much about it until 3 weeks later I was so tired.  Went to Dr and they did chest X-ray.  Said it appeared to be  community pneumonia.  I didnt think so.  Asked if this could be from radiation, pneumanitis.  Radiology stuck with pneumonia and put me on antibiotics for 5 days and said come back in 3 wks for another X-ray.  1 week later I went back and said this doesn't seem to be going away.  I wanted a CT scan so this 2nd Dr ordered it due to my recent breast cancer/radiation.  CT scan showed what I thought, plus community pneumonia but also multiple ground glass nodules  and it was noted they can't rule out metatastic lung disease.  I'm very worried.  They put me  more potent antibiotics and prednisone for 12 days and said repeat CT scan in 4-5 weeks.  That happens Aug 30.  Was told if still signs of this I need a lung biopsy.  My cough and tiredness are pretty much gone but these nodules have me worried.

Yon13 said:

To have radiation treatment or Not

I had my lumpectomy 2 weeks ago. Lympnodes came back negative and margins were clear. I am told that standard treatment is radiation and hormone therapy.  My cancer in invasive mucinous carcinoma and was caught very early only 5mm tumor. 

If I do Nothing else there is a 10-15% chance of a reoccurrence.  

If I do the treatments it will cut that chance in half so 5-8% chance of reoccurrence. 

Am I crazy to even consider not doing the treatments? I just think burning and poisoning seem somewhat barbaric means of treating an illness. What are the risk factors for a new illness occurring from the radiation or hormone therapy? 

 

 

Hey Yon13. 

I get your reluctance.  I think we have to accept that nothing is without risks.  Most especially concerning cancer treatments.

I had surgery, chemo and radiation, in that order, 17 years ago.

Yes, I'm still here, but have had my share of late side effects and difficulties.  Including some heart damage from both radiation and chemo.  I knew the risks, at the outset, as I made my decisions.  Would I have doine anything differently, today, than I chose to do then?  I cannot say, with 100% certainty.  I honestly don't think about it much at all. RAther, I choose to feel that I made my best decision at the time and I got through it all and moved on.  And thrilled, when I had that last rad!!!

Bottom line is that every "body" is different.  Notwithstanding what the docs may think...that everyone's biological systems are basically the same; they are not.  We all respond differently to the very same things.  So it is with cancer treatment.  Some people may burn very, very badly with rads, while others scarcely burn at all.  Some end up with a smaller breast, which can be hard, discolored, etc., while others breast may scarcely show any negative effects at all. 

Bottom line, is that we cannot possibly ever know then, what we know now.  And we also feel differently, at different stages in our lives about our decisions, than we may have felt then or how we may feel now. 

My suggestion is to relax your mind and emotions.  Perhpas consider a 2nd opinion, just for the additional input.  And do exactly what you're doing here...ASK those who have been there.  Make some quiet time just for you, and feel inside yourself, for your particular answers.  What's right for you.  The answers will come.  And once you have made your treatment decisions, don't look back, after the fact.  There is nothing to be gained from that, except perhaps some self recrimination or regrets.  I know too many women who desperately wish they'd made different choices, back when. Truth is, that it's a highly emotional time in our lives and while we may make some decisions for the wrong reasons, we must steele ourselves and try to avoid that.  And no one else can really tell us what is best for us to do.  Not our loved ones, not our friends and not even our docs when you get down to it.  It is your body, your life, your future and your decision to make.  (For what it's worth, I agree with you.  Slicing, dicing, burning and poisioning, is a barbaric business and comes at a price which is more for some than for others.  Yet, it's all we have to rise against the beast.  That and our own determination, coupled with our personal belief system, support system and our stamina.  I have always believed that if I can do this, anyone else can do it too, and do it well.  So, take some self time and make your decisions and get on with your life.  Starting today!)

I wish you the easiest passage possible over this rough terrain, for today and for all your tomorrows. You have many sisters who have gone before you and many who will follow your journey and mine. And while each journey is different, we still share so many of the same fears, concerns, issues and emotions. You are not alone! 

Here, you can share, vent, commiserate, moan and bemoan, laugh and even cry, at times.  CSN was always one of my fav sites back then and I still check in annually or so.  Mostly I read and I rarely post.  Your post reached out to me, so here I am responding.  I hope what I've said may be of some help to you in some way as you navigate the decision making process.  Just try not to get too caught up in statistics, because you're one person.  Stats are really only useful to docs and the scientific community, for the most part.  You are a very unique individual.  More than a diagnosis, more than a case, more than you may believe yourself to be.  You are an amazing person, faced with some difficult decisions and I have every confidence you will make the right ones for yourself.  

Love, light & laughter,

Ink