Hi, this is my first post although I've been registered for a while.

My brother-in-law was recently diagnosed with tongue cancer and will need a total glossectomy and neck dissection to be followed with radiation.

He is 41 and has no insurance.

The surgery will be done at University of Virginia in Charlottesville in three weeks.

My sister wanted me to do some research for her. What I am finding is hair-raising. I'm really not sure what to tell her. The local doctors led her to believe that things weren't so bad...then when she and her husband went to UVA, they heard a much scarier scenario.

She has no internet and is not very tech-savvy. I asked her if he would need a PEG tube or anything like that, and she said the doctor didn't say (or she couldn't remember). She thinks that he will be in hospital for only three days.

Is that possible? To have a major surgery like that, and to be spit out on the street after three days because (I assume) of no insurance?

It is all so frightening and has happened so fast. Apparently he had a sore tongue for a few weeks and ignored it until he couldn't eat! He has always been so quiet and kind and has the sweetest laugh. I am so sad this is happening to them. They have three boys. The youngest is 13.

I'm not sure why I am posting other than to just have an outlet for my anxiety.

Thanks in advance for any thoughts you have to share about this situation.

Scot,

First, welcome to OCF and these forums. What you will find here is an opportunity to vent and to collect valuable information.

What I think everyone would like to know about before really spitting out information is going to be a little more on Brother in Law's (BIL) cancer. What kind of cancer is it (Squamus Cell Carcinoma ect..) what stage, metastisis?

Having no insurance isn't a death sentence. Your state and county should have an emergency medicaid program that is evaluated on a financial need basis...your BIL should easily qualify. They will pick up the medical bills and keep a running tab which your family will be responsible to eventually payback. Don't be afraid of that last part as they usually make flexible payment options. This is a short term solution as your BIL should also be applying for SSI and Medicaid immediately depending on his diagnosis.

Depending on what they are doing in your brother's surgery 3 day hospital stay could be spot on...I just had a 5 hour surgery that involved skin and nerve grafts that they had to lift half my face off...I had the option of it being an outpatient surgery but elected to stay a day. My first surgery kept me in the hospital for 11 days but then it was a major, 17 hour surgery.

Anyway, the more info you can supply, the more info will be available to you. This is a tough time for your family, just remember that while scary and not an easy road...it's a road that others have traveled.

Eric

Also to help put your mind at ease a bit...The University of Virginia at Charleston is ranked in the top 50 hospitals (47th)in the US for their Otolaryngology (head and neck) dept. They should be up to speed with modern treatments and protocols and should have a few surgeons with steady hands.

so sorry to hear of your BIL's diagnosis. Welcome to the forum, you will be able to find a wealth of info here--glad u posted. sounds like he will be in very good hands. please keep us posted on the progress.

Lots of questions will come from the posters here - asking for more information, so expect that.

Firstly, I would strongly doubt that he would only be in hospital for 3 days following a total glossectomy. And I would expect that he will require some method of being fed while he learns to eat without a tongue - and yes it can be done.

Alot of what will happen post surgery will depend on the pathology from the surgery, so it is impossible at this point to say what all will be required.

It took a year for me to be diagnosed correctly, and my story is not unusual. Oral cancer is often dismissed, misdiagnosed, diagnosed as something else, etc, etc, so the time frame that you are talking about from first symptom to surgery seems very short, which is a good thing - assuming he wasn't being stoic before that.

Stay close, ask questions, see if you can pin your sister down for more concrete info that way the people on the boards can be more help to you.

Take a deep breath its just starting. Sounds like you will be a wonderful support for your sister and her husband, and it sounds like you are a wonderful person to so actively be involved.

Donna

Thank you all for your messages of support. It is a great comfort today to see that I can get some answers for my sister.

She has not been able to provide me with as much information as I'd hoped. The first doctor (who did the biopsy) told them that the cancer was stage 1B--those are my sister's words; I am not sure if she has this correct. She admitted that much of what the doctor told her was way over their heads. I have suggested that she take a note pad to appointments and to jot down key words and instructions that I can research for her later. She said she will do this.

Anyway, I understand the need to act aggressively with this type of cancer, so I am glad the fine folks at UVA are doing what needs to be done.

As for other details, I am not sure what type of cancer. My sister thinks it is SCC, but again, the terminology was bouncing around all over the place and seemed a blur. I have suggested she call the doctor's nurse this week to go over the details again (in plain English!) because it was just too much to grasp when they first met the surgeon.

When I find out more, I'll post the details here. Thank you so much for your support.

Scot,
that is what i did. the terminology can be overwhelming. i wrote down every word i didnt know and looked it up later on the net.

Scott,
In the FAQ section of the forum, there is a dictionary of common terms. I suggest you print it off and give it to your sister after familiarizing yourself with them.

I would also suggest, if you can, go to the doctors appointments with you BIL. Another set of ears is always good. If this is not possible, have your sister tape the conversation so you listen to it later, then help them prepare questions. Most drs will not object.

Take care,
Eileen

Hi Scot and welcome to OCF. I'm sorry to hear about your brother in law and I'm sure they both appreciate your support. I'm glad you posted. You will get so much wonderful information and support here.

Eileen has a lot of good ideas that I wish I had thought of. Taping the conversation would be awesome. I would come home with the pathology reports and Google everything and that was terrifying.

Do you live close to your brother in law and sister?

Scot55

I am a caregiver for my partner who was recently diagnosed Dec. 8th, with oral cancer who also didn't have insurance and became unemployed in Nov. One of the hospitals here provides financial assistance anywhere from full contract to a sliding scale, according to income, etc. The waiting period to see the financial rep was over a month but the Doctor, his staff, my insistence and unfortunately some resistance from the financial office she was able to get in within a week and was awarded a full contract (only $10 copay for ER). You need to be firm and persistent.

I also strongly recommend applying for SSI, Medicaid. Apply for Social Security Disability and SSI over the internet. PRINT off everything to have a copy, even if it means doing page by page. I made a copy of my copy, obtained any other information SSI needed, original documentation, obtained signatures, etc. and instead of waiting for an appointment, I went to the local SSI and gave them all the paperwork to get the ball rolling. Here in Florida Medicaid decisions are based on similar requirements for SSI. Have your sister apply for Food Stamps, also, if possible. The laws very by State.

Maybe you can assist your sister filling out the applications. Also you may inquire at the hospital regarding help in seeking assistance, caseworkers, social workers etc. or to point you in the right direction. Googling your sister's state, county and city may also help. There are people that used to work for SSI and Medicaid, know the ins and outs and will assist for a small ONE time fee if not for free. The red tape is ridiculous and adds one more tick to the stress meter.

Help is out there. Ask questions. Be firm. Research, research, research.

Similar to your BIL, my partner's left ear was bothering her, brushed it off, then she wasn't able to eat solid foods and has gone downhill since. It's been a whirlwind.

The taping thing is an excellent suggestion. Hmmmm, now to find a recorder.

Linda

Hi Linda...you should be able to find one at Best Buy:)

Scott,
My husband tape every conversation with the Dr. as he did not want me to go with him in the beginning. I transcribed everything and words that I didn't understand, I researched them on the net. That was invaluable to me as Jim is extremely private and sometimes he just didn't want to hear, so he let the recorder be his ears.

As far as SSI - I did the paperwork and it was EXTREMELY THOROUGH. I had all my ducks in line and he was still declined. We then went with what Linda is suggesting and had a previous employee for SSI complete it and she took her one time fee out only if approved - it got approved and she took her fee immediately and he received the rest. IT WAS WELL WORTH IT, TOO! This forum has saved me sooo many times. Visit us often as there is so much to learn. Have your sister keep a notebook in the beginning as the meds, treatment and trying to filter ones way thru this maze is overwhelming to say the least.

Good Luck!
Paula

My BIL Matt's surgery was today. I was not able to be there since I am about 6 hours away and currently have no transportation.

They removed 2/3 of Matt's tongue (SCC tumor) and also lymph nodes both sides of his neck. The surgeon said they won't know the lab results until next week but that Matt would "definitely need radiation treatments" in a few weeks--the tone of which scared my sister to pieces.

They said he will be in the hospital at least until Sat/Sunday.

Now we wait.

Thanks, everyone, for your support and for all the wonderful information found on this forum.