Hello everyone,
First off, thank you to the hosts of this web site, the information resources here, and best of all, the forum for patients are relatives.

I'm not a patient. I'm a brother to my elder sister, who just got diagnosed with oral cancer. It's on her tongue, on the right side.
She doesn't have insurance, so she was complaining about tongue sore for a couple weeks and trying out different in-home remedies, before seeking out a dentist. The dentist prescribed amoxy for a week, but that didn't work. So she went to a general practitioner, who recommended seeing a specialist. The specialist right away said it's cancerous and recommended biopsy. My sister was taken aback...no other possibilities, she thought? The next day, she got the biopsy, came back positive. So about a month later after she was complaining about her tongue, it's confirmed she has cancer.

She is 44, never smoked or chewed tobacco in her life, nor does she drink alcohol. She is not HPV positive either. This seems so totally random. And worst of all, to be stricken when she was laid off and thus without health insurance briefly.

Then the specialist recommended CT scan. So got that done. The report says it's a "well marginated tumor in the right lateral aspect of the tongue which measures 1.5 x 2.8 cm in transverse dimension. It does not cross the midline that
extends to the midline raphae of the tongue." It also say, on second line, "Multiple mildly enlarged/pathologic right cervical lymph nodes in the right mandibular chair are present. No other pathologic lymphadenopathy is present."

I would have hoped the specialist, after seeing the CT scan report, would be able to give a "staging" of the cancer. But so far he has been talking about the costs, and getting that squared away.

I would rather my sister move to Houston and get further medical care at M.D. Anderson center in downtown Houston; we have family there so she can also be better taken care of there, instead of in Dallas. I feel helpless, since I'm in Philly.

Anyway, I wrote a lot. Just wanting some answers:
- is her tumor very big compared to others?
- what is her prognosis? it seems it got caught early?
- she is hoping to get medical insurance coverage in about a month. Does she have time to wait that long?
Or should she pay out of pocket (and have to likely file personal bankruptcy), and schedule treatment (surgical removal, then plastic surgery, then follow-up radiation or chemo?) at M.D. Anderson at the earliest?

Grateful for any insights.

Thank you all, and have courage.

Welcome to OCF! Im very sorry to read about your sister. Shes lucky to have you in her corner.

Please understand at OCF, we want to help everyone who comes to us with questions. But, we are a group of oral cancer patients/survivors and caregivers. We do NOT have medical backgrounds, years of medical school, clinical patients experience, etc to be able to answer some of your in questions. You always will want to consult a medical professional about whats best for your sister. We can only give you info about things we have been thru ourselves.

As far as comparing tumors, not everyone here knows that sort of info. My doctors never gave me any size info for any of the cancerous tumors they found. In my opinion something thats 1.5 c x 2.8c sounds small but I honestly wouldnt know. As far as her prognosis goes, again thats something to discuss with her doctors. Make sure she gives permission for you to speak to them. Ive seen Stage I patients pass away while Stage IV patients survive sometimes against great odds.

As far as waiting for treatments, the sooner the cancer is eliminated the better. Those types of decisions are completely up to the patient, same goes for which treatment plan is chosen. Without having any sort of medical training or background its best asking how soon treatment should start to her doctors.

Studies have proven patients fare better at Comprehensive Cancer Centers (CCCs). If your sister is able to go to MD Anderson, thats one of the very best cancer centers in the US it should be a very good choice. Some facilities have financial assistance programs to help under or uninsured patients. She will have to ask, those programs do not always get offered to patients unless they specifically ask. Some patients make good use of their waiting time by going for second opinions. It is always a good idea to hear not only what the tumor board says but other places input as well. Unfortunately financial concerns play a part in the patients treatment. Those are very personal choices. Most times waiting a couple weeks will not make much difference, but in a few patients a couple weeks was a huge difference. Like most things, everybody is different so what works for one may not work for another. This goes even with patients who on paper appear identical, they are still individuals with their own unique make up, tolerances, etc.

Im very sorry I wasnt able to better answer your questions. Maybe you would benefit from reading more about oral cancer . Theres a link Ive added to our main site where theres page after page of info about anything and everything to do with oral cancer. In the resources section there is a list of places that may help with financial help. It cant hurt to investigate those sites further. I always say.... you never know, if you dont ask, you dont get. Good luck to you and your sister!!!

Main OCF Site... Understanding section

Thank you so much, ChristineB!
I realize these are very one-off issues, and answers are always going to be one-off. There can be not much of a generalized answer about these matters.

You have given me some pointers, so I will follow up on those.

Is it possible for her to schedule treatment while she's waiting for insurance as to not lose more time? Not sure how it works in the US.

Definitely go ahead and ask, when you find out what they want to do for treatments, what the payment options are. I was in the middle of a medical process recently when my husband changed jobs. There were also misunderstandings between us and the (what turned out to be multiple) offices involved, which meant certain pre-approvals didn't happen. So ... out of pocket it was. Once we figured this out, and knew what to ask, folks were pretty good about working with us to make sure that payments could happen, and it was amazing how much less expensive the numbers suddenly got. I wish we hadn't had to go through the craziness ... but it taught us a lot about asking questions! Doctors and hospitals will often give significant discounts to those who are paying out of pocket, and it is definitely worth asking about. They won't usually volunteer the information, though.

Disclaimer: I am neither a doctor nor a lawyer, just a person whose insurance situation got incredibly complicated fairly quickly, and we were in the middle of treatment when it happened, so a little late to take it all back. I really do need to go update my signature stuff ... anyway, things are better now.

Update:
So she got an appointment with the chief of head and neck surgery dept at M.D. Anderson Cancer Center for this coming week. They asked her to make a big deposit before they would schedule her, but at least they'll see her.

The diagnostics (biospy, CT scan) done in Dallas will be reviewed and the doc at M.D. Anderson might do another CT Scan, but then it'll be treatment outline time... hopefully they will schedule her for a quick surgery, and cancer will be in the rear view mirror.

As for insurance-- she is paying out of pocket, for now. But let's see.

Wishing you both smooth sailing through this.