Radiation nightmare!

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Swanfleweast
Regular Member


Date Joined Nov 2006
Total Posts : 147
   Posted 7/9/2010 8:43 AM (GMT -7)   
Hello My name is Lori I am 48 years old. I was diagnosed with breast cancer 10/09. I had dcis and inflitrating ductal carcinoma. So I had a double masectomy in 11/09. That all was fine. I did my chemo..that went fine. Well I just finished 27 days of rads and had 1 more to go and I ended up in the hospital for 5 days. They litterally melted the skin right off my body. The skin just fell off. So now I sit here with 2nd degree burns and my whole left side of my chest and underarm is just flesh. And they also fried my lungs at the same time, said I had copd. Of coure all the docs are covering each others butts but I think  this is a very serious matter. Now not only do I have to wait til who knows how long my recovery will be but ..is my skin ever going to heal enough to be able to get my reconstruction done. I am so upset..furious and just not knowing what to do about this. I want to go to them and show them what they have done to me, but i dont think it matters. Just a warning to everyone out there...Please be careful. So sorry for ranting....but I always know you all are here for me.
Lori
 Diagnosis: Fibro-05, RA-06, Pleurisy -11/06, Pericarditis -12/06, Myocarditis-1/07, Myositis-1/07. Feltys Syndrome-07, Mitral Valve Prolapse -1/07, Heart Murmur -1/07, Sinus Tachycardia-07, IBS-92, Anxiety, Depression, insomnia: 
 Stage 3b Grade 3 dcis and infliltrating breast cancer her2 +


barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 7/10/2010 10:01 AM (GMT -7)   
Oh, Lori. I wish I could tell you it is all going to be fine, but really, I have no idea. Nor do I have any idea how this kind of thing is allowed to happen. I am furious for you! I would document, document, document. Have someone take pictures. Document some more. This kind of stuff just should not happen in this day and age. Again, I'm furious for you! I wish I had answers to offer, but right now, all I have are gentle hugs and sending prayers that the burns will be treated properly and heal well. Let us know how it goes.
Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


Brnadebt
Veteran Member


Date Joined Jul 2005
Total Posts : 688
   Posted 7/13/2010 8:55 PM (GMT -7)   
Hi Lori
I don't post very often, but when I do I try to be helpful! I had breast cancer twice, and did over 3 months of radiation, after my chemo. I have to admit I got pretty sore by the end but nothing like that!! My mom had radiation in 1988, and I have to say she was burned the color of a blackberry! That is the difference between then and now. Who ever did your radiation should be ashamed of themselves!
 
Good luck!!
 
 


Swanfleweast
Regular Member


Date Joined Nov 2006
Total Posts : 147
   Posted 7/14/2010 3:06 PM (GMT -7)   
Thank you both. I did go to my reg doc because even the hospital left me with no answers as to how to even treat this. So now I will go to the burn unit but not til next week. The wound is still just open flesh. I pray that this does not ever happen to anyone.

Barkeyboys.
Thank you for responding to me..I have taken lots of pictures and some documentation. I need to go and sign for my med records. I dont know what to do with all this just yet but I do know that if it interferes with my reconstruction. I will not be a happy camper.

Brnadebt..I too have not heard of this happening to anyone. Bless your heart for having to go through this as much as you did. I pray I am done and not have to ever do rads again because I will not. They terrified me enough. Thank you both for being there for me.
Lori
 Diagnosis: Fibro-05, RA-06, Pleurisy -11/06, Pericarditis -12/06, Myocarditis-1/07, Myositis-1/07. Feltys Syndrome-07, Mitral Valve Prolapse -1/07, Heart Murmur -1/07, Sinus Tachycardia-07, IBS-92, Anxiety, Depression, insomnia: 
 Stage 3b Grade 3 dcis and infliltrating breast cancer her2 +


barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 7/17/2010 9:03 AM (GMT -7)   
Hi, Lori. I don't know that you will ever decide to do anything with the information and pictures, but if you should decide to look into legal action, you will have it. I know you are stage III, but really. I know our friend Jo Anne Had a lot of issues I think from radiation, even had gangrene set in at one point? She doesn't post much anymore, but MK, I hope you'll add any info you know of to this.

Are things going any better???

Hugs to you...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 7/31/2010 6:48 AM (GMT -7)   
Hi Lori, I too think you need to persue this, something is really wrong.

I did 7 weeks of radiation all I had when finished was very slightly reddened skin which quickly went away.
The greatness of a nation is judged by the way it treats its animals.
 
Mahatma Gandhi 

Jo-Ann
Veteran Member


Date Joined Jul 2003
Total Posts : 829
   Posted 8/1/2010 6:03 AM (GMT -7)   
Lori, I was unfortunate enough to be in your shoes having had double radiation. I can honestly tell you that I don't think this was done on purpose or was a mistake. Sometimes excessive radiation is mandatory for stage III. You could actually see the tumors growing around my mastectomy site. Unfortunately for me, gangrene did set in and I had to have major surgery to correct it. If it is at all possible, try to have hyperbaric treatments, pure oxygen at a sea level of about -45 feet.

This healing process is long and just another path on the road to recovery. I was initially given 9 months to live but that was in January of 1996. I know things have improved since then and while it is a very scary situation, you can do it. Just hang in there.

Tender Hugs, Jo-Ann
A good friend will bail you out of jail...
but a true friend will be sitting
next to you saying,
"Dâmn... that was fun!".

Swanfleweast
Regular Member


Date Joined Nov 2006
Total Posts : 147
   Posted 8/6/2010 11:20 PM (GMT -7)   
Hi Jo-Ann,
Thank you for your input. I am so sorry that you also had to endure the tragedies you have gone through. After i got out of the hospital about three weeks later i started having fevers..they lasted for 13 days. I went to urgent care and they treated me for sinusitis. But i was getting sicker. So i went to see my reg physician. He did chest xrays and they were in pretty bad shape. I now have pnemonia. I just hope and pray that this is not going to be the new ways of the rest of my life. They said there is scars on the lungs...but hopefully they will heal. They said they might or they might not .And I have to ride it out and wait and see what happens. At least my burns have healed. I just cant imagine getting through all of everthing i went through and have something like this try to take me down. Im sorry to sound negative. I just have been through so much with just this radiation stuff in itself. And God Bless you!!! You are a tough cookie.
Thank you so much for your info. Im going to try to be positive from here on. I am alive and thats what matters the most.
Many hugs to you.
Lori
 Diagnosis: Fibro-05, RA-06, Pleurisy -11/06, Pericarditis -12/06, Myocarditis-1/07, Myositis-1/07. Feltys Syndrome-07, Mitral Valve Prolapse -1/07, Heart Murmur -1/07, Sinus Tachycardia-07, IBS-92, Anxiety, Depression, insomnia: 
 Stage 3b Grade 3 dcis and infliltrating breast cancer her2 +
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