Nerve and bone damage from Radiation

Apaugh

Hi, I have looked around the site and cannot pinpoint this particular problem. 

It is not for me as I have never had radiation for BC. 

My friend is 3 years out from her last radiation.  She had a lumpectomy.  She is experincing deep pain in her rib area with muscle spasms.   She had test and it is not from her back.  Blood test are normal.  The docs told her it could be damage to the nerves that were caused by the radiation. 

Has anyone went through this and if so, how were you treated and did it help? 

Thanks,

Annie

Teach76

Chemo?

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.

Apaugh

Teach76 said:

Chemo?

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.

no chemo

No chemo.  She tells me that they told her it was nerve damage caused from the rads.  That the mylan sheeth is burnt away?????   She decribes her pain just like you said.  They have tried PT and stretches, various pain meds that cause her to be ill.  She even went last week and got injecitons into the rib area to see if they could quiet the nerves down.  It ended up causing her more pain and extreme muscle spasms. 

She is beside herself and is really suffering from this and wonders what to do next.  They have sent her to pain mngt. but they seem to be at a loss as of what to do.  I feel so bad for her.  Since all this ended 3 yrs ago, I am guessing it is going to stay.   I was just hoping that maybe someone on here has something to say about how they manage it to lessen it.  Thanks for telling my your story, I will pass it along to her. 

Hugs,

Annie

HapB

Damage from radiation

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.  

meschellejensen

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?

HapB

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. 

 

Apaugh

HapB said:

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. 

 

I dont know....

She went to the one in LA, UCLA.

Mariangel43

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?

protocols

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.

Annabelle41415

Neuropathy

I've been on the colorectal board for cancer and I've experienced terrible neuropathy from the Oxyplatin that was my cocktail and I'm still dealing with it 8 1/2 years later.  It's never gone away and I'm on medication daily to help.  Mine was rectal cancer and so my radiation was directed at my hips and as of last year my second hip was replaced due to radiation damage.  Radiation can do so much damage that the doctor's don't even tell you about so I'm sure that there could be damage.  My prayers and thoughts for you and your friend.

Hugs!  Kim

Mariangel43

Apaugh

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.

Mariangel43

Apaugh

I lost again the second window.  Tell your friend to try acupuncture/hyperbaric treatment.  These are usually effective for necrosis or fibrosis of the tissues.  I am sorry that she is suffering from severe SE. Has she talked to her RT staff? Did they accept responsibility?  I have read some stories of terror from persons in this site and in others in which they were given rad overdoses and they were very sick.  

I have been reading a lot of things and there is much speculation with cancer therapy.  Chemo or RT does not cure cancer; they can create a new cancer instead. They, as treatment, they prolong life without symptoms (disease-free survival DFS) but they do not prolong life to the same life expectancy as a noncancer person. That is called overall survival OS.  Yes, I was shocked when I read it and ... furious.  Are they intoxicating us from the inside and the outside for some years more? I think that is inmoral and unfair.  They should invent new meds and tx to treat cancer.  And RO and MOs should talk to their patients with honesty.  They should prepare the people for future side effects.  

The last thing: pain.  Once my neurosurgeon told me to get used to pain.  I looked at him quite savagely (no, I didn't kill him).  I learned to live in pain so that what is normal to me is an acute pain to another.  Ex.  I have two fractured knees and walk all time with them, have not healed because lack of rest because I need to work.  One can get used to pain. It takes time but the pain threshold rises.  

My blessings and best wishes to all.  

Maria

Apaugh

TY

I appriciate the time and the knowledge you have all shared.  I will pass it along to my friend. 

I wish you all peace and love.

Hugs

Annie

disneyfan2008

I had two lumpectomies on the

I had two lumpectomies on the same side-no chemo only radiation

MY breast is NUMB and ast the same time has SLIGHT pain in incision areas (2 differnt cuts)

Mariangel43

lumpectomy numbness

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