Hi everyone- Even though this is my first time posting I have been coming to this site since January when my mother was diagnosed with oral cancer. She had a white patch on her gums which she thought may be thrush, it turned into a growth she went to the dentist which told her that she needed to have a deep cleaning. She had that done and nothing improved the growth continued to get larger, she finally was referred to a periodontist who immediately told her to go to the oral surgeon to get a biopsy. The biopsy result show she had squamous Cell Carcinoma and was advised to contact her medical insurance company for referral to head and neck oncology.

She has Kaiser for her insurance so her options were limited were she could go for her treatment. She first meet with the head and neck surgeon who said they would present her case to their tumor board on Monday and would call to let us know their recommendations. They ended up recommending surgery that would include removing the jaw because the tumor had invaded the bone, and then removing a bone,muscle and tissue from her leg and resculpting a new jaw. They also did a neck disection.

She had the surgery on feb 19. The surgery went well and the intial lab results were clear margins. But the next day she had a heart attack while in ICU. She spent two weeks in the hospital to make sure her heart was ok. It test on her heart didn't show any damages and the doctors said it was probably from the stress of her surgery.

She also has a wound on her neck that the stitches came apart due to some radiation she had 40 years ago for Hodgkins. The wound still has not healed all the way.

Anyway the reason I feel we now are so confused is that we met with the radiologist on friday regarding radiation, and they are telling us that are leaving it up to her regarding receiving radiation.

They said she was T4N0MO, grade 1 and they told the chance of reoccurance is about 50% maybe a little less if she opted for no Radiation. If she Received Radiation it would be IMRT 5 days a week for 6 weeks, but she would have to deal with the side effects plus because she has had previous rads to her neck the side effects could be worse, but would cut down the chance of reoccurance in half. Even her surgeon said he didn't know if it was him what he would do.

My mom is terrible about making desisions and keeps asking me what she should do?

Anyone with any advice would be appreciated.

Sorry I wrote so much I thought it would help to know the background.

Sherri

Sherri,

Was/is she a tobacco user? How old is she? How about alcohol consumption? What is her general health condition? How much radiation did she receive before? Did they mention any concurrent chemo with the radiation?

David- I thought I covered everything but I guess I left out some important info.

She is 66 years old, a non-smoker, non-drinker. I don't know exactly how much radiation she had previously I just know that it was 43 years ago when technology wasn't as good. I think it was cobalt. It burned her entire neck. Generally her health is ok. She takes blood pressure meds,thyroid med and cholesterol med.

Hope this helps.

Sherri

Sherri:

Welcome to OCF. You will find lots of support here. Sorry that I cant give you advice, Im sure there is someone here who would be able to help you.

After reading your post, I just wanted to say I hope your mother feels better soon. She has gone thru so much with the surgery and then the heart attack on top of it. Your mom is lucky to have you as her caregiver.

I think you should do what I did. I wieghed all the options and made my choices based on the pros and cons. The Choice has to be hers though. talk to the R/O carefully and say, Mom, here is the deal if you do and here is the deal if you do not. What do ya want to do? Heck, you can get a second opinion as well if that helps.

Prayers to you and your mother.

john

Sherri,

If she is in doubt then she needs to get another opinion. I went to 5 different cancer doctors before I thought I could make an informed decision. Has any of her docs mention the possible cause of the SCC? Have her slides been tested for HPV?

Kaiser won't pay for 5 separate opinions. You may get them to pay for one however and I would ask for a consult with City of Hope CCC since you are in LA. (I assumed you were in LA)

Clinical trials have conducted on re-irradiating previously radiated patients and have found the side effects to be tolerable. The cobalt does add a twist to it since the recent clinicals involved ionizing radiation.

Hodgkins is typically treated by a light dose of whole body radiation. The down side of it was as the source weakened they had to increase the exposure time which could cause skin damage due to the "dark radiation" aspect of it. Only third world countries still use cobalt today.

The decision has to be about risk & benefit. The RO (and/or even the MO) is the best qualified to help you with the decision.

Thank you everyone for your advise. We are going to try and get a second opinion. The Kaiser RO & MO both said the pro's and Con's are about 50/50. Does anyone any recommendations in the Los Angeles area? I will also call City of Hope.

Sherri

Hi Sherri,

We live in Southern California and when my husband was diagnosed with oral cancer we had Kaiser Insurance. I have to say I was impressed with the treatment they gave him. His ENT was in Woodland Hills, but he went for his radiation treatments in L.A.

Now we have Blue Cross and he goes for his follow up check ups through UCLA Medical Center, Head/Neck Dept. They are excellent. You might want to check with them too.

Best of luck,

Shelley

Sherri,
I have to agree with Shelley, I too have Kaiser and have had excellent care from them, always in compliance with NCCN Oncology Practice Guidelines. They paid for me to go the UCSFCCC for my RT.

Things are changing at Kaiser. They are building dedicated cancer centers and are stopping outsourcing RT and bringing it in house. No doubt in anticipation of the 36 million baby boomers.

FYI, most of us had 50/50 odds, or worse, (mine was technically 38.2% chance of 5 year survival). Keep focused on risk/benefit and not statistics.

City of Hope is a CCC in the LA area. http://www.cityofhope.org/home.htm