OCF is undertaking a new project. I hope that it will be of use to patients coming down the road behind us. It is a book, a daily journal, and place to collect receipts, and other related bits and pieces that are part of the process of going through treatment. It is designed to be a resource book, in binder form, for those that are newly diagnosed. One part of it is a 120-day log. A page for each day. That portion is a place to keep track of meds taken, caloric intake, weight, symptoms or problems that appear, and other significant information that will allow patients to spot trends, ensure that meds are taken, and nutrition is kept up to par, and more. There will also be sections on what questions to ask at different stages of the treatment path, notes from doctor

Brian,

I think that is a great idea, and would have been so useful when I began this journey, especially here in OZ where there isn't a great deal of information available. I'll put my thinking cap on

Cheers!

Tizz

cool, count me in; in any way that I can help.
lenny

Sounds much like the book I organized for myself and I cannot tell you how valuable that was. I will help in any way that I can.

Brian - Fabulous idea. Well done. I would like to see good, clear, simple info on ports, pic lines and peg tubes. These were some of the first decisions I had to make and I felt very poorly prepared to make them. Problems with attached appliances happen often its tough to know the routines from the emergencies. I'll help in any way I can. Tom

WONDERFUL idea! There's so much to keep track of with the diagnosis and treatment of this particular form of cancer. And so little time to learn about it all as you are trying to make decisions and stay on top of your treatment.

Despite all the care I took to research things and ask questions, I have some (hindsight is 20-20) wishes for things I should have been more concerned about and asked more questions about at the time (and I also kept one of those notebooks with a log, info. about insurance issues, meds, etc.).

With the collective wisdom of having been through it that we have accumulated here between all of us, this should be a really invaluable resource when it's done.

Nelie

Please consider the following topics for the book:

1. How cancer affects our children.

2. Depression after treatment is over.

3. The emotional process of saying goodbye to our pre-cancer self and welcoming our "new normal".

4. There ARE silver linings within a diagnosis of cancer.

These are 4 subjects that hit me hardest and I wish I had known more about it at the time I was dealing with it.
Great idea Brian, I look forward to contributing.

AWESOME IDEA
I hope every public libray gets a copy and there should be a grant to do it/
our two cents
Radiation or NOT in early stage cancers ( yeah a subject we love to debate and the jury is still out.
Dental health issues. To have pre treatment extractions? Why and why not? The consequences? The after treatment issues with your teeth.

Pain Management
Some truth about painkillers 1) don't be afraid to ask for them and how to do it if they are not forth coming. 2) the side effects. I know there are many issues but we were most surprised by the constipation if it hadn't been for the info I found here we wouldn't have known cause the Doc's didn't tell us.
Have an Advocate. It seems like the book will be a great resource but the value of someone else to accompany you to appointments to fill in the blanks accurately is invaluable.

Great idea, Brian. I wish I had had one. While I am certain this is going to be designed (rightfully so) for later stage diagnosis, I would have appreciated knowing more about prognosis and treatment for early stages. While I may have not gone through all the steps, I didn't see ANY hopeful information out there. I was definitely prepared for the worst, but would have appreciated knowing about the "not so bad" outcomes as well.

Sincerely,
Lisa

There is a book similar to this already in print. I have a copy. It is called "We have walked in your shoes, a guide to living with oral, head and neck cancer". It is published by S.P.O.H.N.C. (Support for people with oral and head and neck cancer). It is a free publication that anyone can send for a copy. My copy was copywrited in 2006. You may want to look at it - to make sure you don't duplicate that book. Maybe make sure that you touch / go into detail on things it might have missed.

The table of contents seems to cover everything everyone has mentioned from symptoms and diagnosis, to after the diagnosis to treatment options to side effects, it includes personal calendars and records keeping pages, looking forward after the treatments, coping with fear of recurrence and diet and nutrition.

Just thought I'd let you know in case you weren't aware of this book existing.

Amy, I have that book as well as another from Cancer Care. They don't do what we intend to do, and that is not our model. Right off the bat, OCF had a chance to partner with BMS to do that very same book, and we turned it down because there are ideas that they wanted in (all the stuff about symptoms and diagnosis and things that are BEFORE diagnosis), that are irrelevant. You have the disease. This is all a mute point. There are more issues than that, but as one example try and actually use their log area. It is so small for each day you couldn't possibly write in there the things we need to. And things that we talk about keeping track of here, they don

I just read the first few posts this morning... You guys are great!! These are the ideas that we need to share with others. At the end of the day today I will get the new forum up, and we will start new threads about several of these topics. We will be working with a long term friend and graphic designer Tom Grogg in Newport Beach to set up the final look and feel of the piece. I have already estimated how many pages of printing this is - part black and white, part 4 color, and we are getting bids on printing now so that we have a target fund raising goal. This is a huge project and expensive to do well. I am talking to to potential sponsors to help pay for it, but Ingrid and I will put up the first money, so that in a few months after we have all put our ideas together and it is fine tuned, it will not be held up waiting for funding. You guys are the best!

PS: A couple of you have written me about the other books. There is good information in them. They are not bad, worthless or any of that. I just think we can do better. I look back at the 4 years of dialog on these message boards and the wisdom here is significant. It is born of real feeelings and experiences, and not just a list of potential problems, definitions, and a glossary of terms. There is valuable information in here that goes beyond what has been done before in print. We are going to make something really useful. It is not a book, it is a TOOL. That dosen't mean that some other organization did try to do good, all it means is we are going to add to the resources that patients have, and not just from a clinical nuts and bolts perspective.

Brian,

What a great idea!

I will be happy to help out in any way even though my experiences were fortunately very limited.

You know you can count on me if I can help with any dental aspects of the project.

Jerry

This book would have been a lifesaver for us 3 years ago. If I had a nickel for every time the Docs would say "Oh yeah I could have told you that".
The simplest things.... when your Hair starts to hurt , around 15 days into chemo, good indication its getting ready to fall out. Just shave it and save yourself some pain.
The trauma of port feedings..thinking I was going to kill him every time I saw a bubble in the line...after a week of that they tell me " don`t worry that little doohickey ( technical term ) takes the bubbles out"!
Maybe the Cancer Centers could be encouraged to buy the book to give to their patients...lets face it Cancer is big business.

Great Idea
Marica

See, but my hair hurt and a chunk along my neckline fell out but I kept the rest and was sure glad later I didn't shave it all off! But I remember Marica telling me about how it feels like your hair hurts and thinking "YES. me too." To me that's what's so valubale about this board is there hasn't been one thing I've run into that hasn't also happened (more or less) to someone else in here and without this place I'd have no way of knowing that.

I would also like to put a plug in for information about issues around making decisions about radiation and chemotherapy if you are stage II. Not a chart saying "do this" but the questions that should be asked, both the ones you may want to ask yourself and the ones you should be asking your doctors.

I also hope there's a section dealing with swallowing issues. This is the one thing I feel I really didn't know enough about when it might have made a difference--I should have had my swallowing checked and gotten exercises much earlier than ended up happening I think.

Nelie

Brian,
I think this is a marvelous idea and don't forget to also include that 'glossary of terms'. A quick course in the terminolgy helps the newcomer understand what the doctor is saying and what to ask for. I think the binder idea is great and should have the ability to add additional pages to the log if needed. I will help in any way I can. Unfortunately I never kept a log and as treatment was several years ago, I have forgotten a lot what happened when. I have often thought that there is so much good info here, that is was unfortunate that it count be consolidated into topics for new members to use with it all in one place. Search engines are marvelous if you know what to search on, but when you're new to the topic, you're lost.

Again, GREAT IDEA.
Eileen

Brian,
What a fantastic idea. It would have been a god send for us a year ago and maybe prevented some of the issues we are dealing with today. Still not sure if we have a handle on all of them yet.
Linda

Brian-
Such a great idea! I remember the first day I met the oral surgeon and he gave me about 5 minutes to decide between 2 different surgeries. My decision was based on the fact that the more invasive surgery would be a month away because the team was on vacation - I went with the less invasive surgery because it could be scheduled in a week. Looking back I wish I had known about this site or that someone would have given me a book when they first said "cancer." You don't even know the importance of your decisions or what questions you should be asking!

Tips I remember - The importance of stretching your mouth open and practicing swollowing during your weeks of radiation. It is sad to be healed enough to finally eat and then not be able to open your mouth wide enough to get the food in!
Starting physical therapy early in treatment with lymphatic message will keep movement in the neck, soften the neck tissue and help with swelling.
Using a contour shaped pillow when you can finally lie down to sleep again! - Kris

Brian,
Fantastic idea! I had a Handbook for Head and Neck Cancer Patients from the U. of Chicago that was very helpful, but didn't begin to answer the everyday questions that those of us who have been there can help with. Count on me to chime in when I can. My personal endorsement is for the Food and Fluid Log to track every calorie and ounce of fluid intake. My "wipe board" helped me immensely. I look forward to this project.

Thanks for the opportunity to help.

Chuck

This is certainly a great idea! I really wish we had known what to expect, especially on day one, when we went in for the first chemo treatment, expecting to get a few shots and then leave. Little did we know it was an all-day affair.
I think there should be a topic on what to expect on the radiation table specifically. Such as there will be days when you are on the table longer due to additional x-rays, may have to have additional CT scans, new mask, etc. If you need to take Ativan or Valium for this purpose, make it clear that you will need to be told ahead of time. Knowing this would have prevented a few unpleasant sessions for my husband, as well as some tension between us the radiation techs, which is not something you want when those people have your well being in their hands.

Actually, now that I think of it, wouldn't it be a good idea to have a section in there for the medical personnel to read, from the standpoint of the patient? Maybe it could start something like this...."We depend on your compassion and forethought as to what we are going through. With this in mind, please note the following points...." Or something like that.

Thanks for all of your hard work and efforts, Brian!

Michele

Brian,
Something else I thought about. For the two weeks before my surgery, for the 6 weeks after my surgery, and for the first two weeks of my radition, I had ABSOLUTELY NO CLUE what radiation was about to do to me. Until I went for my simulation to begin radiation, I thought I would run in once a day to have an xray of my jaw done, I would get a slight sunburn on my skin and might have a few canker sores in my mouth for a few weeks. My doctors kept telling me that they were going to make me sick again with the radiation but not enough was said.............or it wasn't said in the correct way.
THE most frightening moment for me was the simulation for radiation. No one told me of any mask. Radiation treatment and exactly what it is.........not what it does.........rather the process of it (mask, tethering of arms, etc.) needs to be made clear.

And let's not forget the baseline thyroid test that should be done be radiation and follow ups for years after.

Eileen

Brian -
Super idea! The wisdom collected here is priceless and finding another venue for sharing the information will certainly help. I do encourage you to consider a section for caregivers. There are so many unique problems for the caregivers for example: being an advocate for your loved one (I can't over-emphasize the importance) and caregivers' depression. Count me in for any help. I am a Marketing professional and am always willing to help.
Thanks!
Carol

Brian - Consider making this book an ebook. It can be published and hosted in a central location on the net. No printing or postage expense (see below). As an ebook, it can be easily updated without reprinting anything. It can be a work in progress, and still be out there helping. Users can read it on the computer, or they can print it out. Forms, journal pages, calorie counters, med sheets and more could be printed from the ebook as could any section. (We could probably get the office supply outfits to print the thing as people requested it.)

Then the Foundation could print an OVERVIEW of the material - the outline - the quick read - and refer the reader to the ebook for details. We could all distribute the overview - the way we distribute the cards and brochures about this site.

When I was brand new at this - I needed an overview - a big picture snapshot of where I was headed. I had no clue. Our printed overview could serve that 'big picture' purpose. As I headed further into the tunnel I needed details about different things - at different times. If I had been handed a manual with ALL the details at once, I probably wouldn't have read it. But if I had had a way to just get my questions answered, without having to deal with the entire magnitude of this disease.....

We could build our ebook like a pyramid. The apex is the overview - the broad strokes, the big picture - not much detail. Under that overview, by headings, could be a layer of slightly more detail on branching topics. Below that, more branches with more detail. Then I can read "deeper" until I get my question answered to my satisfaction. Next time I think about that topic, I may want MORE detail - so I read deeper.

We want to help people make good decisions, and be and feel supported. There are way too many variables in those tasks for one printed manual to do the whole job. It needs a more dynamic structure than just a book. An ebook provides that. A web site would be even better. Maybe the Foundation should consider this idea. It avoids big printing and distribution costs. It avoids the problem of 1st edtion, 2nd edition, etc. The net is the distribution mechanism - all we would have to do is make folks aware of it.

Just brainstorming. Any thoughts?? Be strong. Tom

Brian -
I think Tom has a point about making an e-book version, however I do want to encourage you to offer a printed version to be available upon request. When my husband was diagnosed and first started treatments, his desire and usage of the internet went from 'all the time' to zero in a hurry. I did order and received the Lance Armstrong Foundation notebook and Kenny used this as reference for a long time. I was the one on the web searching for more information. I find that by having both printed information and web based info gave us much more comfort.
Just a thought -
Carol

I agree that a printed version should also be avilable if an ebook is offered. Given that this disease strikes older people more often than not especially, an ebook is not going to be a format everyone will be comfortable with.

Nelie

Well, besides what has been posted here, I have had several communications with people interested in helping me/OCF in this endeavor. Clearly as we are describing it, this is a HUGE undertaking. Hundreds of hours of working through the information and writing the final copy, not to mention the review time and edits. Given all the commitments that I have, that can only be part me, and a lot of assistance from a competent writer/s. That is part of the costs of doing this, not just a time commitment, but also a financial one separate from printing expenses.

As Gary has stated, there are several books out there, that while not oral / head and neck oriented, provide many of the answers. I have looked at many of them, and in my opinion, there are many good, but none that address the specifics of our disease. Of course if you just want to know about the different kinds of radiation for instance, there are plenty of books and places to get this

Brian, this does not address the above, but I just finished reading the "tube feeding" posts and wish I had read them a year ago to help John. Will there be a topic on that in the "Tools" ? Amy

It is an important topic that is always asked about by everyone that comes to the forum. Seems like a must have. But right now I am interested in direction and comments related to that.

Brian - Allow me to further clarify my ebook idea. First of all, it can be sold over the net very easily. Thousands of ebooks are sold every month.

The older consumer is an important issue. (And I didn't feel much like surfing while I was sick either!) The basic book - the overview (defined as you like it) can be hard printed and distributed in many ways by hand and mail. The details - the mass of data we would want people to have access to - the potentially scores of pages with lots of good info - could be internet distributed or web site disbursed - either free or for a fee.

The average cancer patient, of any age is not cruising the book stores any more than they are surfing the net - no matter their age - they are busy being sick. How did you intend to sell the whole printed book? How would you market? I assume you will be counting on caregivers both professional and family to recommend the book. Whomever gets the nod to go get the thing - order it from you, find it in a store, or whatever can still do that. It just won't be 300 pages and cost $28.50. The potential consumer who could order it from you, but not access it electronically - can still order it from you.

Publishing hard copies of books is pretty competitive business, and frankly, pretty old fashioned. Plus, our topic needs updating pretty regularly. As soon as we send this book to the print shop, it begins getting stale. If the book is very big (40 or more pages) you risk being unable to sell them all - leaving you with a dated and expensive inventory - and no market. Being a publisher is very, very risky financially.

An electronic book can be printed when its ordered. Printed by you and mailed to the consumer for $23.50, or the consumer can have their local copy store print it out for them after buying the download code from you for $8. Or they can print it at home. No OCF inventory. No up front printing expense. No gambling on the potential market for it.

The book can be continuously updated. The book can be constantly modernized to offer the newest info, even other brand new books, news articles etc. It never wears out, it never gets dusty, it never gets dated. Oh, did I mention, IT NEVER GETS DATED or OBSOlETE.

Sell the overview for $5, or give it away. Sell the download code for the next level of detail (or print it and mail it to them) for $19.95. Sell the entire compendium - potentially hundreds of pages - for $69.95.

Think of all the good details that are stashed on the OCF site right now. What if all that data was organized to a datafile, cross referenced and menu driven and then downloadable??!!

The book could go out as pieces - weekly "episodes" of information - sold as a subscription to the OCF Ezine. Each piece is sequential and offers more overview, details on a topic and news about recent happenings. The Ezine is sent out automatically by an autoresponder. It sends out new sections each week or at whatever frequency you choose. The caregivers can read it, decide if they need it and print it, or request a hard copy, or just store it. Again, it is data base driven and not hard printed in advance. The OCF Ezine - just $9.50 per month - billed automatically to your card - cancel anytime you like. There are many paid-subscription ezines published every week.

My push for this is based on two things: money and being in the 21st century. Why gamble on publishing? Why not underwrite some of your future, on-demand printing costs with some of that publishing money, and use the rest to market the book. And why expend all this energy to write a book that will quickly become dated? That is all so.. yesterday. Ok, I'll drop it now. Thanks. Tom

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
--------------------------------------------------
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

Oral cancer IS NOT uncommon in non-smokers, and it is increasing in under 50 year old non-smokers. A lifelong tobacco habit, even one that terminated several years ago, continues to be a causative agent for a variety of cancers, and other medical problems. At this point you should not beat yourself up about choices you made earlier in our life. The past is behind you and nothing can change what was. Your focus now needs to be on dealing with the cards you are holding and playing the hand that you have the best you can.

Informed choices are the main thing that you can do now. Do not hesitate to question your doctors about everything. It is their job to answer your questions as well as treat you. Your RO may not have been to blame for the question, the surgeon may not have forwarded his records or post-surgical path reports to him. This could have been a timing issue or just sloppy handling of the situation. But clearly, asking you about the size of the tumor removed seems odd. You don't mention what his plans for you are, but what ever, you should understand his direction and have confidence in him as a result of his explanations of your questions. Never hesitate to be your own advocate. It isn't the doctor's life on the line here.

If you were not feeling insecure right now, I would say you were abnormal or lying. All of us are afraid of things from diagnosis on. All you can do is try to keep things in perspective, take it one day at a time, and keep moving forward with the vision of a return to a normal life in your future. That does not mean that any of it will be easy or there will not be days when you don't think you can deal with it all. But those days eventually pass, and you will find the strength, courage, and will to face the next one. Trust in yourself. Trust in the great people on this board to help you when it gets rough.

Awesome. I wish I had been able to read a book like that when I was first diagnosed.

Everyone be sure to go to the "Getting Through It" thread (at the bottom of the forum menu) and stay tuned as this project begins to take shape!! Its going to be both challenging and fun! Tom

Thank you Tom for taking this on. You are sure to get LOTS of good advice. Amy