Nerve and bone damage from Radiation

Did your friend have chemo, too?  I am 10 months out of all treatment and my neuropathy is worse than ever ( late effects they call it).  I also experience some rib pain, but more pain in breast after radiation.  Surgeon and RO feel it is scar tisdue and nerves still regenerating.

i know the feeling - Tylenol and Advil do nothing for nerve pain.  I have tried to figure out if it is  my movements, sleep position, or clothing causing pain.  Sometimes it is a sharp rib pain, other times it feels like a slow moving pressure along the rib - can even take your breath away.  Concerned about gallbladder, but checks out ok.

hope she gets some relief - I suggest journaling a description of timing and type of pain.

I had 8 weeks of radiation for a past cancer . I had no issues at all, other than being tired. However, many of the patients who had the same treatment, but at different hospitals. Had severe and long lasting damage to their internal organs.  Not all treatment centers have the best equipment, or well trained staff, or maintain their equipment properly.  I hope that your friend gets the help she needs, but it is a warning to all of us to find out about the protocols and the proper equipment for safe radiation.  

mesch, from my experience, it you are being treated at a top rated hospital or cancer center, you need not worry about it. It is in the smaller hospitals that are not well rated. These smaller hospitals just cannot keep up with technology and cut corners. Most of the med mal cases that we did involved equipment that was out of date or no properly maintained. You are at a good place, so that should not be your concern.

I hope you are doing well and enjoying Phoenix at least a little bit. 

meschellejensen said:

That is scary stuff!

I am so sorry for your friend!  I am going through rads right now, I wonder how how we can find out about protocols, proper equipment, and safe radiation.  How do we learn enough to be good advocates for ourselves?

Go to American Society of Clinical Oncology ASCO; they establish the guidelines for treatment to different types of cancer.  This organization has recently grouped and modified some of the protocols for cancer treatment.

I lost what I wrote before.  Some RT side effects are long lasting; there are fibrosis of the breast tissue (it gets hard), lymphedema of chest and arm, necrosis of the breast tissue, neuropathy, cancer of the same or of the other breast, osteoporosis, and many others that are not commented so as not to scare you.  They do so because not all women develop all the side effects.  That is the first reason they do not tell. And the second is that we need it? The thing is that many times RT is given as a preventive measure, specially when given as a companion of chemotherapy. I take Vit C and D as preventive treatment for infections, but they are not as toxic as RT.

As other women have said, not all centers and hospitals are equipped with the best equipment and staff.  Equipment costs millions, equipment updates hundred of thousands, and updating staff much more.  Those who are not appropriately well equipped should say so so that persons can have a choice.  But these centers put on their economical interest over the health of patients. Unethical but real.

ASCo gives the new protocols.  Women, as patients you should read them so you know.  It is technical stuff but necessary.  Doubts should be consulted with your own RO or well trusted physician.  When something doesn't click or cause you anxiety, ask, ask and ask until you understand and you are completely aware to what you are saying yes. If you understand the side effects and complications of a therapy and you are willing to run the risk, then you are on the right track.  Otherwise you are being placed on a position of powerlessness and then comes the regrets.  Ask what, how much, when, where and why.  How much rad, where will it be applied, why there and why so much, what will happen after and during treatment, and when (period of time per day and total time).  Continuation on a next window.

Disney, in lumpectomies as well as mastectomies, surgeons sometimes cut the terminal endings on the area they are operating.  That may cause permanent or temporary numbness.  Why they do it?  Anatomy, of course.  As for the pain, how long has been from the surgery?  My last operation was on Dec 8 and I still have pain in some areas of my "breast", mostly where there are the sutures.  If pain persists for too long you should go to your surgeon. He must check the area. Hope everything gets well for you.

Maria