Need HELP for my mother!

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Need HELP for my mother!

Postby Believer » Mon Feb 01, 2010 8:16 pm

My mom was diagnosed with ACC in 1982 when I was just 7 months old. She was told she probably wouldn't survive this rare type of cancer to be able to see her daughter grow up. With her strong faith and determination to live to watch her daughter grow up she was able to overcome this grim diagnosis and was just with me watching her first grandson being born this past October. This March I will be 28 years old!
She had surgery on Oct. 20th, 1982 to remove her parotid gland and tumor that they thought was benign. On Oct. 22nd, 1982 the pathology report came back stating the tumor was malignant and not benign. She then received 32 treatments of radiation therapy that put her in remission from ACC. Side effects from the radiation therapy were evident in her appearance soon after treatment was overs. Her muscles and nerves on the right side atrophied and in her right arm and shoulder, also the right side of her neck, face and ear. She never seemed to mind these disfiguring side effects as I was growing up she was just happy to be alive and healthy.
Not until recently in the last 5 or 6 years she has started a rapid progression of what I believe after much research is the chronic late effects of radiation. None of the oodles of doctors she's seen in the last couple of years could pin point why her neck and cspine had started curving to the left so dramatically. They wanted to do a fusion at the base of the skull to T2 to correct this progressing curve that was forming in her neck. They put her in a halo a week before surgery but she never had the surgery because of complications of aspiration pneumonia prior to surgery which I'm glad she didnt because after reading about the late effects of radiation I see that healing of the bone after fusion would have been a problem and would have probably left her in worse shape than before. So she thinks getting the bad spell of pneumonia was a sign and decided against any surgery to correct the severe curve of her cpine. The dr told her without the surgery it was going to progress till her head eventually would be laying on her left shoulder. That was two years ago and it has got alot worse. She has bad dental problems as result of the radiation and dry mouth because of the removal of the parotid and has alot of muscle atrophy in the radiated area. A large portion of her right ear over time also deteriorated. She now gets pneumonia about every four to six months and has to be hospitalized and this started after the initial aspiration pneumonia occured. She was told all the other pneumonias were bacterial but after seeing a pulmonologist he determined they were all asp. pneu. the other dr's weren't reading the xrays right. The lower curvature in her spine due to radiation has compromised her right lung to the point she's always out of breath and has O2 at night and when needed. The pulm. dr said her phrenic nerve is paralyzed and thats the cause of her right lung being so comprimised because it had envolvement with the diaphram also. They said she would need a feeding tube eventually but they couldnt gaurantee she wouldnt still get asp. pneumonia anyway. She also has problems swallowing because her neck and throat radiation damage. Her right carotid artery is also almost completely blocked by scar tissue. Because of her spinal damage she is in constant pain and is on a high dose of controlled release pain meds twice a day just to be able to function and get out of bed. I feel helpless and cant stand to watch her physically deteriorate anymore. My father passed away when I was three and she raised me by herself so we are very close and she's the only family member I have left and am desperate to help her and to stop the progression of this radiation damage. I can't imagine what my life would be like without her here for me and my newborn son. I am in desparate need of a dr that specializes in radiation damage to see her and please help us! I thought I'd try and find a support group to see if anyone else suffers from the chronic late severe physical side effects of radiation therapy as she has. I havent seen anyone with the disfiguring side effects of radiation but if she has it so severely there has got to be others out there. I have searched for hours on the internet for pictures of other people and there stories and what experiences they've had as result of this but cant find any what so ever! Please help!
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Joined: Tue Jan 26, 2010 1:47 pm
Cancer Diagnosis: adenoid cystic carcinoma
Relationship To Patient: Daughter

Re: Need HELP for my mother!

Postby sharon » Tue Feb 02, 2010 8:13 am

Have the doctors considered hyperbaric chamber treatments to stop the progression of the effects? Has she had a thorough workup to make sure that this is not a recurrence or metastatic growth? I would definitely consider getting other opinions on what can be done to help her.
Take Care, Sharon - Administrator
This post should not be considered medical advice. Review all information with your doctor.
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Posts: 1460
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Location: AZ USA
Cancer Diagnosis: adenoid cystic carcinoma of the breast
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