Not sure if this was mentioned (please disregard if this was already suggested) - but "how to deal with insurance". For instance differences in plans, PPO, HMO etc....how to file appeals, how to get pre-authorizations, what to do if a request is denied - as someone who was VERY healthy before this and saw the doctor only once per year on average (for a routine pap smear), I had NO idea how to start things with insurance when they didn't want to pay or approve things. Other things - like when are copays required and when is it still "post-op followup" and no co-pay. My problem experience was with an HMO that didn't want to pay to let me see a specialist outside of my network. I had no idea where to start.

Tom makes good points, but I also agree with Carol about needing hard copy versions. My husband was a mainframe DPer all his career and won't go near a PC. It's like the feds telling all these 80 and 90 years to figure out what prescrption drug plan these need on using the computer. What computer? Hopefully we can reach both audiences.

Take care,
Eileen

Brian,

This is a great idea and I would like to add a thought. It is nearly impossible to find ANYTHING for after-care issues for total glossectomy and near total glossectomy patients. The issues surrounding loss of tongue mobility are not appreciated, even by many folks who have had some form of H&N cancer. This is not to detratct from their issues, just that you have to have had a total or near total glossectomy to understand the problems involved. We are probably a very small subgroup of H&N cancer survivors that have special needs and find very few answers.

The loss of one's tongue mobility is a MAJOR quality of life debilitator. Speech is severely restricted, even with a free flap reconstruction by fine surgeons and a palatal drop mouth prosthesis that I have. Swallow therapists are generally unprepared to fully understand the special needs. Mine was helpful in having me use a syringe to "dump" fluids and pastes to the back of my mouth for swallowing. After a year of therapy, I find I can swallow this way. I have read some posts where total glossectomy patients eat more solid foods but I haven't a clue how the food gets to the back of the mouth with NO tongue mobility. There are NO books that I can find to help in this vital area. I still require a PEG tube for the majority of my nutrition after 2 years! I also had two esophagus stretching that helped swallowing.

As I understand it and the way my ENT explained it is when this type of glossectomy is done, the flap is attached to the floor of the mouth in front. At least that is the way I understand it and that the flap must always stay in this position which doesn't permit motion. Yet I read some articles that suggest that some mobility may be possible even where a total or near total glossectomy is done. CANNOT GET ANY ANSWERS.
Other areas: Cleaning of tongue, dental issues.

I am more fortunate than most in that I am still cancer free and I was old enough when I contracted this cancer to where I could retire even though I would still be working if I could because I liked it.

I can't imagine having condition this at a younger age where one still has responsibilities to work and care for a family. So I feel I must bring this subject up for their sake more than my own. Thanks for the great work you do and all the folks on this forum. If any of my experiences can help, I'll be glad to do what I can.

Jim Haucke
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SCC rt lat tongue dx 9/03,surg 11/03 (T2N0M0);recur BOT &floor of mouth dx 1/04,surg 2/04 subtotal glossectomy, pharngectomy, forearm free flap,neck dissection, trach & PEG 12 hrs surg (T4N0M0), 36 rads 3-5/04; cellulitis infection 6/04 and 10/04, start therapy Nov 04 complete 12/05

The new subject matters are valuable and are areas in which we should certainly venture. These are going to have to have input from doctors and therapists WAY more informed than I am. I many of these cases, OCF proposes to publish a small grant for the compilation of the information.

As to Tom's post and e publishing. I think that he hits the pros and cons of the issue dead center. I can't believe that the person (me) that was adamant that OCF be a web effort vs. any other type of medium, especially print, 5 years ago, because of the ability for it to reach so many people so easily, and to constantly up date and grow the information base, became so myopic in perspective. Chester our web master and I have discussed this at length this afternoon, and he has assured me that this is completely doable as a web store download purchase, as Tom says in portions, in a continuing subscription, etc. Clearly this is the path that costs us the least right off the bat, and gives us the greatest flexibility to get something out there in the very near future, which can be built on as the information is developed. Also Tom points out, there are services that will print and bind small orders as they are developed and it is a matter of finding the right companion company to work with to do this.

Printed copies of this effort are essential. I agree with everyone who has said that. The question is not WHETHER or not to print it, the question is WHEN to print it, and HOW and WHERE to print it. Why pay to ship a book to Australia, when it could be printed there? In fact, why pay to ship a book across this country, when it could be printed very near the reader?

Thats the strength of an ebook. There is only one copy of it - and it's on the OCF computer. It is constantly updated and modernized. When someone wants a hard copy, push a button and print it.

I'll bet the big chain stores would agree to print for us. Office Depot, CopyCo, QwikPrint, etc. Our cause is noble and I'll bet they would love to give our users/customers/members a price break in printing and binding the book for them. Most of those places give teachers a 10-15% discount just for saying they are teachers. And the printing style they favor is one-sided, 8.5 X 11. That supports Brian's idea of this being a loose leaf, perhaps 3 ring binder held book. Imagine all the things we could add to each customer's binder in the future. Its exciting. Welcome to literature in the 21st century. Be flexible. Tom

Brian,

Yet another great idea from you! Thank you again. I would like to see lab results tracked, too, with some type of notification of questions to direct to the docs when something is trending in a certain (bad) way. Also, the ability to print out your questions for the medical team after you have accumulated them in preparation of upcoming appointments. (Jot them down as they come to you but print them to take with you so you can check them off as you ask.)

Ed

Being just barely "computer literate", but learning more daily- I am quite fascinated with Tom's e-book approach. It makes alot of sense to me. I am also in favor of charging a fee for this information. The information will be invaluable to those who need it and monies generated can be put toward defraying costs and helping more people. Amy

Along with a form for tracking lab results, it would be very helpful to have an explanation of what those results MEAN. I remember getting a detailed explanation (but not the details of what it was at this point) from an oncology nurse about how they computed white blood cell count from the lab results--it wasn't just a straightforward number on a printout. Furthermore, there was one level of WBC where I was "too neutropenic" to get the next round of chemo but it turned out that that was slightly above the level where I was technically neutropenic by the definition the hospital used when I was admitted with a fever a day or two later.

While I was in the hospital with the mysterious fever that took it's time going down, they took blood every day and I finally asked a nurse to tell me what the blood count numbers meant. He explained the confusing white blood cell thing again (how I was just barely above the technical def. of neutropenia but the other number that indicates you have baby white blood cells suggested I should be OK soon) and also I learned, to my surprise, that despite the Procrit injections, I was just barely above the red blood cell number that, if you go below, they often do a blood transfusion!

I don't know, maybe most people don't want that level of detial and just rely on what the docs and nurses tell them but I would have liked to understand better what it all meant to begin with.

Nelie

Fantastic idea Brian, may I suggest a printed copy of the book,with a dry erase board as the front or back cover?! Fun penholders too..Just remembering how much I used that while in hospital and at home trying to communicate with my family! By the way, I know it's been awhile but your pamphlets are at the Surrey Cancer Centre in BC Canada and being reviewed by the board, the librarians & Drs involved before becoming a part of their literacy program..Thank You.
All the best
Maria

OVERWHELMED!! Bless u Brian. Maybe my own insecurties will give u some additional ideas for this undertaking. My time line: Initial Byospy, 3/22/06, Diagnosis-3/27/06, Surgery-3/30/06. Stage 1, tumor base of tongue, all lower teeth in front removed along with bone down to floor of mouth, tumor and bottom of tongue showing cancers removed out to good margins, floor of mouth cleaned and graft done to base of tongue and floor of mouth.

Feel rather inadquate as to what to do next. Want a copy of pathologists and surgeons reports for myself and too possibly share with another RO. The RO my surgeon send me to, in the middle of our session, asked, what size tumor was removed. Shouldn't he have been better prepared b 4 he interviewed me? The more I think about this the more I am appalled. Anyway, a guide as to the steps to take and a timeline would have been helpful to me.

Not to brow beat RO, however he did state also that oral cancers are "VERY RARE" in non smokers.This is not my impression. Little late now, but I did throw my smokes down for good after a lifelong cigarette habit.

Maybe my own inadaquacies and insecurties will give ya'll some additional ideas for this undertaking. Just rattleing, Papa