My name is Kendra and I'm new to all of this. I'm a college student up in Springfield, Massachusetts and am currently in Norfolk/Chesapeake VA because my father found out he has cancer in his tongue.

I'm lost and confused and not sure what to really do. I'm in VA right now, taking a break from school, to help him. But, I need help.

My father was an overall healthy guy and has no insurance or a doctor. Our next step is getting a Pet/Ct scan done and seeing how far it is... but, it's hard to do any of this without insurance. I am looking into federal help but that can take ages to get and we need the scan now. And a good doctor... (his dentist found it, did the bioposy and diagnosed him.)

So, please help. Anyone who can... please.


my email is: [email protected]

Please contact me.

Just a thought...have you spoke with any social workers from the hospital?

Also there is another room further down the forum page that discusses insurance and such you may want to do a search there.

You're a good daughter for looking into this, and I am sorry your dad has found himself in this situation. This can be a tricky disease, and it's best that he be seen at a place that deals only with head and neck cancers.

I know it's a three-hour hike from Norfolk, but you should call the UVa Cancer Center in Charlottesville -- one of two National Cancer Institute-designated cancer centers in the state (meaning that it is on the leading edge of research and treatment). It has a head and neck cancer center and as a state institution should have provisions for treating state residents who do not have insurance. The social workers there may know of state plans that could be helpful to your dad.

The Massey Cancer Center at VCU in Richmond (about an hour closer to you) is the other NCI-designated cancer center in the state. It has a head and neck surgery clinic that works with VCU med school's department of otolaryngology. VCU also receives state funding so should have provisions for state residents with no insurance. Again, check with the social workers there.

Dear Kendra -
You have certainly come to the right place. There are lots of good ideas and help available. I went to the Insurance forum page that Tim mentioned and there is a wealth of information and ideas on how to speed up the process. I am fairly new, too and am the mother of a 33 year old son with no insurance and no job. going thru radiation after tongue surgery. Did your Dad have a biopsy? My son got the name of an excellent surgeon from the doctor that did the biopsy. And the hospital has been really great with reducing costs and helpful financial information. It really helps to talk to people and keep checking the OCF site.

Closer to home for you, Eastern Virginia Medical School in Norfolk has a head and neck cancer center in its Department of Otolaryngology . (And its "patient education" section links to OCF!)

Everyone... I want to thank you in the tips of what to do.

Leslie, your help was wonderful. I contacted the Eastern VA Med School and they took us right away and made my dad's first appointment for Tuesday, Nov 13th.

Glad it worked out. As your dad's treatment progresses, new questions will arise. This is the place where you can get answers from people who have been there, both as patients and as caregivers.

Someone should accompany your dad to his appointments and take notes. The patient may not always "hear" what the doctor is saying, and it's good to have a second person there. The information on these boards and on the main OCF site will help you come up with questions to bring to the appointments.

The OCF homepage has links to hundreds of pages of information on a variety of topics, all related to oral cancer. It has a search function (separate from the search function for the message board) that will allow you to easily find what you're looking for.

Keep coming back!

All the best --
Leslie

November 14th. Not the 13th. Wow, I looked at that wrong. Haha.

Thanks again, Leslie. I am planning on going to the appointments with him and I was considering bringing a notepad and my tape recorder. (I'm a journalism major, can ya tell? haha).

And I plan on coming back! :-)

One more thing -- once you get a diagnosis and treatment plan from Eastern VA, get a second opinion from one of the NCI-designated cancer centers (UVa or VCU), just to be on the safe side. (You may be closer to Duke, in North Carolina, but I don't know what its policies are about seeing out-of-state patients without insurance. You could always call and check.)

Here's information from the main site about the importance of a second opinion .

Ask before you bring out the tape recorder (you can frame it along the lines of "My dad and I just want to make sure that when we get home, we'll know exactly what was discussed today" or something like that). Be advised that some doctors may not agree, out of concern that, in a lawsuit, their words could literally come back to haunt them.

The notepad is fine.

Okay Leslie. Thank you so much for the tips. I will keep all of them in mind.

Kendra,
Please let me know if you are seeing Dr. Karakla at EVMS. He is my doc and one of the very finest. No need to travel to Richmond area, good treatment is in your backyard. Email me if you want more details and I'd be happy to meet with your dad. We have a support group that meets on Mondays for when he's ready.
Minnie

Hi Leslie,

Yes, the Eastern Maine Medical Centers site has a link to OCF.........and their lobby has the OCF handouts. They are my doctors and I gave them and our support group all the info on OCF. If you read the article on this site about the walk we did here in Va and look at the pic of me with the two docs...........those are the men that saved my life!

Oh, Minnie, I should have remembered you were a local and sent her your way. Apologies.

Hey Leslie,
Never apologize for helping someone on here!! That was fantastic of you to take the time to research her area and help her get to the right docs. This doctors office and hospital are where she and her father need to be.
Take care,
Minnie

Kendra, we brought a tape recorder and had no problems using it. We did ask each doctor first.
Early on, we had experienced problems previous to bringing a recorder. We would get home from the doctor and each of us would have a conflicting review of what was said.
One of the doctors even explained that it is common for that to happen. So much information is being given, you are processing one sentance and the doctor is 1 or 2 sentences ahead already. Each of us our processsing different portions of the discussion. So, he was all in favor of the recorder.
After we settled into the routine of treatments, and as the weeks went by, the need for the recorder was dimished. By then we had read volumes of information from this website, and became comfortable with the doctors and what they were saying.

Minnie-- I am thrilled you posted. Brian had suggested you to me, so you could possibly speak to my father. He does need support from someone who has experienced oral cancer.. face to face support. I'll email you soon.

Mike.. Thanks for the suggestion. I plan on explaining why I need the tape recorder. I think with all the information we might receive, that a recorder would work nicely. We shall soon see.

Thanks again, all of you, for helping!