Yes the actor

Looks as he has joined our ranks. According to Reuters, Doctors have found a tumor in the throat of MD and plan to treat him star with radiation and chemotherapy over eight weeks.

I just saw that as well. I wish him luck.

Wow - another famous patient. Just saw the People.com article [quote] the actor, 65, has discovered a tumor and will under go eight weeks of radiation and chemotherapy, and his doctors expect the Wall Street star to make a full recovery. "I am very optimistic," MD said in a statement.[/quote]
thanks for catching this Kevin
Charm

Such a shame that anyone must go thru the barbaric treatment. This just goes to show you that even stars are human too. Wishing him all the best.

Yes, tragedy strikes stars too. Maybe this will give oral cancer some much needed publicity. If he will discuss his cancer when he's promoting his Wall Street movie, it will do wonders to educate the public.

MD was on Letterman last night...

One week of treatments in.

Note the water bottle !

http://www.youtube.com/watch?v=z67gcf311KQ&feature=player_embedded

Thanks for posting this, Kevin. So good that MD was willing to speak so frankly about his disease and treatment. I wish him an easy course and full recovery!

MDs is Stage 4, and has a walnut-sized tumour at the base of his tongue according to a Yahoo News article posted today.
Anne

What stunned me was David Letterman's apparent total ignorance of cancer staging:
[quote]Letterman asked, "Now when you said stage 4, I heard someone gasp. Now, is stage 4 where you want to be or where you not want to be?" MD said, "Um, no. No, you like to be down at stage 1�[/quote]
charm

Note that his cancer went undetected for months despite repeated doctor visits. This happens all too often and too many people have died as a result. Why is this not medical malpractice? Why are these 'doctors' allowed to continue their negligence without consequences?

It is indeed frustrating that our cancer gets misdiagnosed as sinus, infections, etc on a routine basis. It was six months before I had a CT scan that showed the tumor so I thought that Michael Douglas experience sounded pretty normal.

Unfortunately, missing head and neck cancer does not necessarily mean legally actionable malpractice. Even with the best of care, things can go wrong. Generally, to win a medical malpractice case, you must have expert medical testimony that no reasonable health care provider would have done what yours did. Reasonableness is generally determined by looking at what is reasonable care in view of the Available knowledge, Geographic location where care occurred and the state of medical practices at the time of the illness or injury.

I've been a lawyer for 37 years and even worked for a plaintiff's medical malpractice firm and knew I wouldn't have a case just because the doctors didn't diagnose my earache as base of tongue cancer immediately. It sucks, but it's true.
Charm

Charm,

I suspect that whole line of questions was fairly staged for the audience. All of these talk shows do 'pre-interviews' with the guests and I'll bet the two of them agreed on what points they were going to make about his staging and his treatment.

[quote=Charm2017]It is indeed frustrating that our cancer gets misdiagnosed as sinus, infections, etc on a routine basis. It was six months before I had a CT scan that showed the tumor so I thought that Michael Douglas experience sounded pretty normal.(quote)

Thanks to Brian, Megan and the OCF that hopefully is turning around. Keep up the great work.
I watched the show last night and thought it was really well done. Talk show hosts have to presume that there are people in the audience who don't know these things so they ask questions that sometimes sound dumb. Letterman was also amazed how good M.D. looked after 1 week of trearments and of course I thought to myself "check back with him in about 5 weeks". Uncharitable thought, I know, most people have no 1st hand experience with the toll taken by these treatments.

Margaret

I thought of that which is why I hedged with the word "apparent" but didn't think it likely unless DL also arranged for the audience to audibly "gasp" at Stage IV. If it were the Colbert Report, I'd agree with you.

David

Yep, I thought the same thing. I looked great my first week and even drove my wife out to a nice resturant immediately after leaving my 5th Radiation treatment and we both ate up a storm. I did notice the beginning of radiation dermatitis on his neck in rewatching the video.
Charm

The one thing that struck me when I saw the interview was how thin MD already looks and its only been 1 week. I wonder if they have approached him about a peg tube?

And Charm I did notice the beginning of radiation dermatitis on his neck too. He is such a well known star....I hope his treatment and experience with this dreaded disease can help get the word out to even more people. I've always liked him as an actor, I sure hope he'll be able to beat this.

And I hope his wife will be supportive...it bothered me when I read that she can't stand to see him this tired. I'm hoping I took it the wrong way...but it didn't set well with me.

Shelley

I still felt ok after the first week of radiation. By the end of the third week, though, it was getting to me bigtime. Then the mouth sores started.....it was the longest six weks of my life.

Maybe radiation will be easier for him because they know exactly where the tumor is and can target it. He's in for an ordeal though, no doubt about it. I'm an 'unknown primary' so I think my radiation covered a larger area.

Does anyone know where he's being treated?

[quote=RileyMc]Note that his cancer went undetected for months despite repeated doctor visits. This happens all too often and too many people have died as a result. Why is this not medical malpractice? Why are these 'doctors' allowed to continue their negligence without consequences? [/quote]
Same here...6 different visits and an ER Dr that said I had a sinus infection...makes you wonder.

I hope they can take good care of Mr D and he can get rid of his cancer.

Charm,

I wouldn't be surprised if there wasn't a gasp! Listening to some chatter about the interview on the radio, and also reading comments on websites, people seem to think a Stage IV staging means you're gonna die in a month or two! I wonder if people know how sick Lance Armstrong was when he started treatment!

And Shelley, his wife is apparently a chain smoker... I'll bet the whole thing doesn't sit too well with her, ya know??

- Margaret

He's being treated at Sloan in NYC.

Wow. Great extra info. I found this Web MD article on MD's so called "throat cancer". MD Cancer WebMD Here is an excerpt.
I can vouch that it is quite possible that MD's base of tongue cancer did not have any major symptoms until it's in Stage IV. At least this article mentions HPV. Wonder if MD had his tumor tested?

[quote]
What is throat cancer?

Surprisingly, doctors don't use the term "throat cancer." Several different kinds of cancer can involve different parts of the throat and mouth.

Michael Douglas says he has a walnut-sized tumor at the base of his tongue. If that's truly where his cancer started, he likely has oropharyngeal cancer.

Oropharyngeal cancer may involve the base of the tongue, the tonsils and surrounding tissues, the soft palate, or the front and back walls of the throat.

Doctors use the term "insidious" to describe base-of-tongue tumors. That's because there is no pain sensation at the base of the tongue, so the tumors can become quite advanced before symptoms appear.[/quote]

Also glad I read thia article before I questioned his 80% figure as the doctors in this article thought that was correct
[quote]Later stages are more problematic. Douglas says his doctors have diagnosed "late stage IV" cancer.

"For the advanced stage IV cancers, it depends on the situation with the lymph nodes in the neck," Har-El says. "There is over a 60% chance of remission if it has not spread to the lymph nodes. But if it already has spread to the lymph nodes in the neck, the odds of remission are more like 40% or 30%."

Douglas says his cancer has spread to his head and neck, but that his doctors say his odds of survival are 80%.

Teknos says there's no reason to doubt this assessment.

"We think he is still in the curable category, stage IVa," he says. "Of course we don't know, but his curability could be quite acceptable."[/quote]
My doctors went with the 30 percent which was not pleasant news
Charm

I have to wonder if interviewing him so early in his treatment may do a disservice to the issues at hand by giving the masses the impression that it's no big deal. I would be very interested if they followed up later in treatment or following treatment.

I did great almost up to the end of my treatments and then crashed very hard.

Just a point that most do not know - Michael has been a financial donor to OCF. What you have read so far is accurate, and I would offer this comment on his good cheer and apparent strengths in the Letterman interview.... he is a professional actor. We all know what he is going to be going through, the toll it will take on every aspect of him and his family. But he is certainly already feeling the effects of what is very aggressive treatments.

I turned down ET and the Insider to do TV interviews yesterday and today, but I did do off the record interviews for backgrounder on the disease with the 3 major networks today. I am very close to this situation and feel it is not appropriate for me to comment in public on these shows, speculating on what he has to deal with and the crazy questions some reporters ask, like what do you think his chances are. The media can be such whores, to state it plainly.

There is nothing worse that what our news has turned into - a bunch of has been retired generals, turned into talking heads, second guessing what the commanders on the ground are doing in Afghanistan is a typical example. They don't know the situation, the intel, and are not privy to the big picture, yet there they are on TV telling America how it is, and what should be done. Puke.

Clearly with a diagnosis and a trip right into treatment that is only 3 weeks old, the man and the family are still in shock. That they decided to remain silent for awhile should be no surprise. That hasn't stopped a bunch of doctors starting with Haddad, who commented to People magazine, from speculating on a patient that they know nothing about, when they were not even sure at the time what kind of throat cancer he had, (could have been thyroid, laryngeal, or oropharyngeal all completely different animals right?) to grab a couple of headlines for themselves.

It is inevitable that when a famous person gets our disease, we will get some much needed awareness for oral cancer, a disease that most people have never heard of. But since I am rather close to this situation, I will not be commenting on the Douglas situation here after this post. I know you all wish our fellow traveler on this path well in his battle.

I think there can be difficulties with diagnosis - my husband had no symptoms whatsoever until he found a lump in his neck. The first specialist did an endoscopy but didn't find anything, and the biopsy was false negative. It wasn't until we went to a surgeon specializing in head/neck cancer, who did another biopsy, and then a radical neck dissection, that the base of the tongue tumour was detected. The surgeon found it by sticking his finger down Gordon's throat and poking around while he was under anaesthesia. What the surgeon found was a hard spot at the base of Gordon's tongue and he took a sample for biopsy. The CT scan done later at the Cancer Clinic still showed nothing. The MRI done after that gave a better indication. All I'm trying to say is that this kind of cancer seems to be easily missed and hard to detect. Sometimes I think it's just the luck of the draw - having the right Dr. at the right time - that it's caught.
Anne

Well my opinion of MD just went up after reading Brian's post. I had no idea he donated to OCF and thus indirectly helps keep this forum going. Just another reason to wish him well in the grueling weeks ahead. Brian's point about MD being a professional actor is well taken. MD even alluded to it in the video when he told DL the reason he looks so good is
"I'm on stage".
Charm

I think that the statement "Practice of Medicine" sort makes a clear statment that medicine is an art as much as a science.
Since Oral cancer is not a cancer which is found in a high precentage of the population doctors are not going to think about it first, like they would a lump in the breast. Also there are many things that may intitally mimic the same symptoms of cancer. So they would naturally treat those first. My Oral Surgeon told me that the spot was nothing to worry about but let's just do a biopsy to be sure.Once the diagnois came back told me in 27 years of removing spots from people's mouths he had NEVER gotten this diagnois. I was just lucky because of the location and of course my daily "PET" pushed me to take action.

I want to wish michael all the best just knew it when i saw the water bottle.

I wish MD the best. I know the road ahead of him and his family. I was there as a caregiver to my husband 10 years ago he had Stage 4 throat cancer. Back then they didn't have the technology they have now and all the meds, I wish they did.

Stay strong Michael and his family.

I would like to add my best wishes to MD and his family in the difficult days to come. I hope they find comfort in each other and in knowing how much we care and want the very best outcome for him in beating this cruel disease. I can�t help but feel that he has every chance of success.

Its hard for everyone to get oral cancer.If you are such a well known person, like MD, its even a bit harder. Why? because you cant keep it a secret. Because cancer is a personal issue, something that really involves those close to you,not the masses or the media. Yet he was gutsy enough to go out there and yes, played a little charade about whats going on with Letterman. But the reality is, Stage IV tongue cancer is extremely dangerous, specially after knowing his tumor is about the size of a nugget. Also, the spread to his limph nodes was not disclosed, and thats also a key factor. My very best wishes to him and his family.

It's never easy hearing about someone being diagnosed with cancer, and to hear about another being dx'd with OC is an extra blow to the gut because "we" know what's coming throughout the tx process. You can tell in parts of the MD/DL interview that at times MD was nervous even though he was "on stage" as a professional. During the interview I also wondered to myself how it all seemed to eerily familiar not knowing that it was BOT/node involvement. And as Charm did, I also questioned the 80%, my survival rate was in the 30% range. But as always, today is better then yesterday and my yesterday was over 2 years ago--so I'm sure MD's BOT, stage IVa, node(s)?, HPV related? OC has better numbers. I wish MD and his family the best...What better person to have in your corner then Brian Hill? Nobody.

It's such a shame that anyone has to join our ranks. I wish him all the best.

love how he calls it throat cancer when it's technically oral cancer, doof. Base of tongue is still oral, not throat, and he said it hasn't spread anywhere else yet.

And this cancer is tough to detect. I went from november or 09 till march of 10 till I got a doc to even biopsy mine cuz they kept saying it didn't look like cancer.

His throat was sore and that was his complaint, so why would a doctor look at the base of his tongue for a sore throat? There is lots of referred pain with this type of cancer, at least there was for me. My whole tongue and throat hurt by the time I had surgery to have mine removed.

So it's not always the doctors fault when it goes undetected or misdiagnosed. Only way you truly know is a biopsy.

The positive thing is that when a celebrity gets an illness the spotlight is put on it when it should be there already but that is the way it is and until it changes the government that we put in should focus more on pirmary healtcare than trying so hard too baffle us with bullshit unfortunately it works. Much love and peace to michael and his family.



primary site tonsil
seven secs in throat
back teeth removed both sides
peg in
rad and chemo start sept fin oct 08
reg check-ups
so far so good

CZJ needs get her act together.She could learn a lot from wives and partners on this forum who lead far less privelged lives and have far less opportunity to do some good regarding bringing positive public awareness to oral cancer. She needs to man up and give him all the support he needs which includes putting her own feelings to one side and sucking up the pain caused by watching someone we love going through this brutal treatment.

My thoughts exactly Cookey - and what makes her think any of this is about her?

I truly believe it is unfair to judge her! I do know that I have said some thing's in my life that are totally taken the wrong way. She may be frightened as she has two young children & who expected this to happen. I feel sorry as they have no privacy & I do know I totally needed mine when dealing through this illness.She may be angry & I don't blame her one bit. My first diagnosis was simply a bacteria infection. Let us show some kindness & compassion, after all that is what we are here for.Plus they are going through the first stages of treatment & I do know I was a basket case & my caregiver hubby had enough to deal with. Money does not set us apart when it comes to cancer, It is still the same shit for all of us!

Sorry but she chose to speak to multiple reporters,no one forced her.Silence would have been more dignified if she feels so bad.We all felt frightened,angry, had issues with kids and the future,but one thing all the men and women here who are "caregivers" did, was support our men/women unreservedly and no matter how much we hated it we went to clinics appointments,and generally put our loved ones first,

[quote=Cookey]Sorry but she chose to speak to multiple reporters,no one forced her.Silence would have been more dignified if she feels so bad.We all felt frightened,angry, had issues with kids and the future,but one thing all the men and women here who are "caregivers" did, was support our men/women unreservedly and no matter how much we hated it we went to clinics appointments,and generally put our loved ones first, [/quote]

I agree 100% with you. I bought People and read the article. Catherine can't stand to watch her husband get chemo? She took her children to Bermuda??? WTF??? I can't imagine being anywhere else but by John's side while he endured these terrible treatments. He used to tell me not to bother wasting my time spending my lunch hour with him while he was having chemo. He was treated in the same hospital I work at. I didn't consider it "wasting" my time, I wanted to be there, I felt bad that I had to work and couldn't spend the entire time with him. As a "caregiver" it tears your heart out to watch someone you love so much go through so much but that is what loving someone means, BEING THERE!!!

She has no clue what Michael is in store for. It's easy to be there during the good times. Hopefully she will step up and be there for him or I guess she can always hire someone to do that. I wish Michael all the best and hope he makes a full recovery.

Having gone through this terrible disease has most definitely strengthened the love and commitment John and I have for each other but I guess the reality is it can also tear a not so strong bond apart.

In my experiences (more so with my 20 years of MS than with my short time with Cancer) her reaction is more the norm than the exception. It's always seemed to me that it's harder to be the caregiver than the one who is sick. I don't think you guys truly realize how exceptional you are--and that just makes you more exceptional-because you are doing it because "that is just what you do" it sucks, it's not pretty--but, you do it anyway.

I've had almost everyone "important" crap out on me when I've gotten sick--including both my sisters. I sent this link to them when I was diagnosed and neither one of them even bothered to acknowledge that they recieved it. My husband who has been awesome throughout all the MS stuff over the years went DEEP into Denial land when I was DX'd with the cancer and partially crapped out on me--which was the real reason I went to my mother's house for the two weeks after my surgery--because she is the only one who has NEVER crapped out on me. All of the above have been "unable to handle it because they love me so much" and I used to be more compassionate for them. My response now is that it must be nice to have the luxury of choice. I don't have a choice, I HAVE to handle it. In my more irreverant moments (most of the time) my response is "well, please, don't love me so much" LOL

But anyway, all of this is to make a point--the caregivers on here--you have a strength and courage that the average person just doesn't have--remember...
Courage is not the absence of fear, but rather the judgement that something else is more important than fear.
~Ambrose Redmoon~

and

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.
~ Author Unknown ~

A TRUE hero, is an ordinary person, who does extraordinary things.

You my friends, are all true heroes.
Be well,
Michele

As badly as I feel for MD, whom I have always admired as an actor, I could not help but think that the publicity surrounding his diagnosis might give oral cancer a "Rock Hudson" moment, resulting in a much higher profile for a disease that seems to get little public attention even though several famous people, including George Harrison and Bruce Paltrow died from it.
I also went through a period of hoarseness in my throat, and something just not being right, that no doctor or dentist seemed all that concerned about. Nowadays they think that everything is reflux. Although I do not blame my periodontist who unsuccessfully tried to look down my throat at my request or my radiologist buddy, who was also unsuccessful at the same, I do wonder why, when people complain of sore throats, hoarseness, etc., more doctors or ENT's don't just stick that scope down the patient's nose. Once I finally went to the ENT, he ordered a barium swallow and Xray, that allowed my radiologist friend to pretty well diagnose my situation, but the next day when the ENT stuck that scope down my nose for the first time, it was glaringly obvious that I had a large tumor at the base of my tongue. Most of us here have had that scope stuck down our noses many times on routine Dr. visits, and although we don't like it, it is just not that bad, so I wonder why doctors don't use it more liberally. Of course a good ENT with training in oral cancer can often feel deformities in the neck nodes or down in the throat with his hands.

I join you in wishing MD the best. He is 10 years older than I was when I began my oral cancer journey, and we all know what a difficult road it is at any age.

I don't do a lot of posting these days but would like to add my couple of cents worth as an overall expression of gratitude to many concerning my case.

I have read many posts on this site over the past 4 plus years since I signed up and must say from a diagnosis standpoint I feel very fortunate. Perhaps it is due to the obviously excellent staff at Emory University Hospital here in Atlanta where my "trip through the tunnel" began in April 2006. My only symptom of the right side base of tongue cancer was a lump on the right side of my neck, just below my right ear. The ENT who examined me at Emory spent maybe 5 minutes of poking, pressing and scoping my throat area when she announced that she felt near certain that I had Squamous Cell base of tongue cancer. She then "did the necessary" to get me on to a CT scan and fine needle biopsy the same afternoon. This was followed with a PET scan the following Monday and then a follow-up appointment with her on Thursday. The Thursday meeting was the "eye opener" when she announced that her suspicions of just a few days earlier had been confirmed with my follow-up tests.

Having had no previous exposure to oral cancer under any other circumstances up to that 59 year point in my life I guess I felt as though such a disease as mine was easily diagnosed. Wow! Just how wrong I was after reading and hearing of so many others and their ordeals with diagnosis of the disease now after 4 years.

Regarding the earlier discussed caregiver issues, I would like to openly thank and forever praise my wife for all she did. Even with never having had any medical or caregiver training of any type (always a banker) I don't believe I could have personally hired a better person as a caregiver. The thought of never being with me for every appointment during the ordeal never entered her mind. I even feel guilty at times when I think back at how I felt as though she was "smothering" me with love and kindness during the entire ordeal. She even insisted on doing all of my PEG feedings as I was so totally "grossed" out by the thought of such an unnatural act of pouring something directly into my own stomach. Just the thought of my doing that brought me to my knees! I even made the disastrous mistake of coughing on one occasion when she was feeding me and had my tube uncapped. What a mess that made all over her! She took it all in stride and never missed a beat.

I too hope for only the best outcome for MD. One thing is for sure, a disease such as oral cancer can easily reduce all men or women, regardless of position in life, to the lowest known common denominator!

Bill Dozier

Mr. Dozier,

Thank you for your two cents and all of your inspiring stories! I am gearing up for surgery in just a short week and this final stretch has been so very tough. I am a huge MD fan because I grew up watching his movies when I was not supposed to, but I always found him to be the " Mans Man!". So I keep him in mind as I go through this every night, fighting for sleep, fighting to use the restroom and lashing out at my fiance, fighting just to eat anything. But I keep telling myself I have to much to do, It is way to early to check out and give up.

It sucks so friggin bad and I am at that lowest demominator,been to the breaking point several times and still havent even gotten to the operation table yet. I stopped taking the morhpine so I could pee normal again and number 2, I just want to try and tough it out with lidocaine and mouthwashes til I get there. The cancer seems to be becoming aggressive now,causing more tissue damage and sore on the side of tongue where it seems to be forming a deep hole. I go to the doctor for the last time at the ENT before surgery thursday, hopefully its still good news and surgery is on as planned. This thing is just killing me and I have been close to cutting it out several times myself, I just keep fighting the good fight my friends. Any suggestions or opinions on surgery experience and what to expect is welcomed, I love all of you like family, thank you for being there for me and my family.

Nathan

One Love,and Cheers!

As a caregiver, I was also taken back by her comments. It honestly never occurred to me to not go to appts, be with my husband at chemo,etc.
I recognize that sometimes you can't be there because of work, or kids or your own health needs but because it's hard to see the other person like that??? Yeah, it sure is but I figure it must be harder to be the one with the cancer in your body and anything I can do to ease his situation---I'm there.

Nate, don't feel you need to tough this out. There have been studies done that show having assistance with pain helps people heal faster. As someone who has worked with substance abuse patients for many years,I'm very cautious about painkillers. But, this is not a situation where you need to tough it out. If the meds are giving you unpleasant side effects, talk to your MD. There is a wide variety out there that can help. You might ask for a long acting drug like methadone to help with some of the side effects or just a lower dose of the morphine.

Nate,

I can't help you much when it comes to the surgery option. I did not have to endure that other than the right side neck dissection to remove 11 lymph nodes following my chemo and radiation. My doc wanted to avoid base of tongue surgery if at all possible due to potential speech deformity that could result.

Good luck with your battle and just take what comes one day at a time and then be thankful the next day that the last one has come and gone! Good luck!

Bill Dozier

This forum gets Googled sometimes, and this is one of them. I have for the first time used my ability to censor some of the posts on this forum. I have taken out proper names that might bring particular attention to this thread. We all know what the subject of the thread is at this point, so to us this shouldn't be a big thing other than I have crossed a line that I never have before in a decade.

Re; the people we are talking about; I would suggest that as we are all aware the media seldom gets the story right, but they want to get it out first, right or wrong. We all have very strong feelings about this subject of oral cancer, and about how our life companions journey with us. I would also suggest that what has been suggested by the media is not accurate on this point. That except for the first week the people have been together in this family as well. Some of us, me included, just don't like people around us when we are sick, and ask or drive them away while we get through what we have to get through. Since everyone is speculating here, let me speculate that this is common even among the famous, at least right in the beginning, when a media circus might be surrounding the situation.

If you will all forgive me the editing of proper names, I would appreciate it. Keep on expressing yourselves as you see fit, but please keep any proper names out of this particular thread. Google, Bing and others catalog more than we know sometimes. I am not doing anything because of all of you, but because of my situation, which I can not compromise right now. More, if we are going to say anything unkind, which may pass in any discussion, especially one in which we do not have all the facts, that there are no proper names associated with that, at least on this thread, on this board.

Last - the NCCN guidelines, especially at an institution that helps to set them, are for radiation and chemo to the base of tongue in cases where surgery might compromise long term quality of life issues for the patient. Speculating that someone might at a major institution force their doctors to use a treatment modality based on their personal vanity, is also believing that a doctor would actually do that, and that the media got the story right. Personally at a multidisciplinary treatment center I would speculate that could never pass muster with a group of doctors agreeing to it. This is a life and death issue, and no doctor is going to trade vanity for an opportunity at life. I also do not think that his person would choose that.

Just because the press says something doesn't mean that we can trust them to get it right especially when the story is something involving celebrity or other things that can sell papers and magazines.

Thank you, Brian. You are a true and compassionate leader.

edit accepted and understood

I'm glad Brian took this action. The last thing MD or his family needs is to read negative comments from OCF taken out of context by a google type search.
As for not getting surgery for Stage IV, OCF is full of Stage IV base of throat cancer patients for whom radiation and chemo did the trick. Even though my BOT came back, I am so grateful for the one year remission when I could eat, drink and talk. Surgery remains an option if the rad/chemo does not work. I hope MD never has to have surgery. IMO, his reported decision makes perfect sense and has nothing to do with vanity.

Thank you, Brian and Charm, for clarifying my misunderstanding of treatment for BOT cancer. Also, I have to remind myself that as individuals, we all handle events in our lives differently. There are many paths toward achieving the same goal. I sincerely wish he and his family well, and that he moves through treatment with few or no issues. My apologies to everyone I have offended with my reference to vanity. Going now to dine on a huge slice of humble pie.

Anita

The web is the wild west these days and people can say anything, true or not, and little of it goes uncataloged by web bots that wander around the Internet. I want everyone to express themselves freely, since few opinions are completely without merit. But in this case, who we are talking about is something that others might guess about but not know for sure, and that is all I care about. We would like to believe that OCF members and the organization itself are/is benevolent, which I think is true, but the way people are taking things out of context these days in a media feeding frenzy, what wouldn't be good is a quote off these boards trashing someone for doing something.

I was a Stage IV BOT and I was soooo grateful that I found Moffitt who DID NOT recommend surgery before rad/chemo but said I might need it post Tx which I didn't. Previous to Moffitt I had 3 different docs that did recommend surgery pre rad/chemo. He and his wife are no different than the rest of us when we were newbies to this crap.

Hubby was a stage 4 patient as well and surgery, like in David's case, was only mentioned as a last resort if chemo/radiation did not work. Fortunately it did and no surgery was needed.

Deb

My boyfriend of almost 3 years never left my side, he actually cried when I asked him to go home the day after my surgery because I just felt so awful.
He has been amazing through this all, and to say you love someone and not be there for them is horrible.
I know how hard it is for them to deal with just by watching my mom brother and boyfriend everytime I had to go back to the hospital. But the worst thing you can do is not be there by their side.
I think that is truly the only thing that got me through all of this was their support and by them going into "cargiver" mode. None of them had any training but they took all the classes and refused to let me go into a rehab facility.
Sadly though, all to often, loved ones don't know what to do, and they try to hide from it in fear that their insecurities will make it harder on the patient.
I will say that Ben (boyfriend) helping me through this and being there for me has strengthened our relationship and we are much closer then we were before. I didn't think it could happen, we have always been so much alike and close, but going through something like this and having someone throw down everything they feel inside just to be there for you is just amazing.
I feel sorry for MD that CZ can't do that for him, but maybe she'll come around, at least I hope she does.

I think we have all learned the hard way here that cancer does not discriminate. It doesn't care about age, gender,race,nationality,etc. Nor does it care if you are rich or poor. And it hits us all really hard when it enters our lives whether directly or as a caregiver.
I just wish anyone affected by this crappy disease the best!!!

Hello everyone and nice to see so many familiar names around

I have not been on the forum or involved in OC related relations much lately for personal reasons. Those reasons are because at this time I'm helping myself heal mentally even though I'm coming up on 2 years post tx. It was not expected but after a 2nd OC scare early 2010 I had to create a distance, step back and go after those many things I enjoyed in life before any of this happened. As patients and as caregivers everyone here has been around the block more then once--we know what this disease is all about and what it can do...the pain that it causes. Many things in life can and does cause pain--it doesn't have to be cancer. On the flip side, so much more gives us enjoyment..that smile, a laugh...that inner peace. Life can be good...let life be good! And when it's hard for yourself, a friend or a loved one, take life one step at a time and be there when a hand, a hug or a tear is needed. Sometimes kind, thoughtful words can be said, sometimes there are no words to be found but instead a look of helplessness with tears from both sides of the fence that spells out, "It's okay, I love you..." I've been the caregiver and I have been the patient and none of it is easy. I'm not going to lie, I don't want to be the caregiver and I don't want to be the patient. Call me selfish but sometimes it all hurts too much but if you truly need me I will be there in your corner. That to me is basically what we are all about..the people on this board...If we are truly needed, at any given time someone is here to lend a hand, a kind word...advice...a smile...a tear. I go through life not knowing my boundaries and say a lot of the wrong things at the wrong time but the one thing that I know I do not lack is empathy. Every individual has their point of view of what's right or wrong...how one person should act or not. We are all adults that have lived, we all know what we read is not necessarily true...But if it is...SO WHAT! Who am I?...Who are you? To think that we know what's better for that family, that patient, that caregiver to say, act or do what we think they should be doing. We are not hear to criticize anyone...We are here to help--to listen, lend that kind word...that great piece of advice...to tell the truth....The good and the bad. For those who criticize MD...his family or any other person afflicted with OC...That's not what we are about...We're better then that...We're about helping out in some form or another. I love you guys but save the bashing for those occasional snakeoil salesmen that sometimes roll through here...If I offended anyone..Eh? Get over it. Let life be good and when it's not lend a helping hand and a caring heart.

Ray,

You are a kind and caring person, and a valuable member of the OCF family.

We all love you!

Ray,

Welcome back to the forum! I've missed your posts filled with honesty, compassion and empathy. Excellent post - well said and all true.

Remember, we are here for you. You have my number if you ever need to chat, vent or a shoulder to lean on!

And to the subject of this thread - I wish MD the best through his OC journey.

A welcome back from me as well Ray,
I also think your post was wonderful and there were so many ahha moments for me as I was reading it.
Also on the subject..the OCF family are here to support everyone who has been touched by this awful disease.

Sorry Ray,we all know what OCF is about we have all trodden the path in one way or another and are still entitled to our opinions.This family have chosen to carry out their battle in the public eye,made their statements and appeared in magazines and on television.While i fully applaud the attitude and honesty of the patient and admire his fighting spirit which will no doubt help and encourage hundreds of sufferers,i do think his wifes statements have been neither helpful or supportive to those women who are facing the unknown future of caring and advocating for their loved ones stricken with this disease.If she chooses to make such feelings public,then we are entitled to make comment on them.I for one don't see this as "bashing",and as for so what? ask the men who have said time and again on these boards that without their wives/partners they would never have made it.

I love this forum, have done so for over three years and one of the things i love most has been the honesty and frankness we have all been able to express here.During my year of living with Robin and his illness i rolled with the punches of other peoples opinions which were not always what i wanted to hear,but i never lost sight of the fact that they were given with love and usually the benefit of experience.An opinion(criticism)is just that.

[quote=davidcpa]He and his wife are no different than the rest of us when we were newbies to this crap. [/quote]

With the exception we are more freely able to join and participate in a public discussion that I imagine he or his wife would be comfortable in doing, just because of their unique situation. I think we can all remember the comfort/relief (insert appropriate emotion here) of finding this forum and being able to participate. Now try to imagine NOT being able to. I don't care how good the alias, I imagine someone would figure it out.

I really had less trouble with my surgery than I had with the chemo and radiation. I had the surgery first, then the radiation and chemo. I hope that MD doesn't wish that he had gone ahead with the surgery. My husband with me almost every day as well, and the few days when he wasn't, my sister came with me.

Maybe MD and his wife *are* reading this forum and getting some comfort from it, even if they don't think they can participate. We just don't know.
We should all keep that in mind, and try and keep our comments supportive and compassionate, no matter what anyone thinks about the way he and his family are handling the situation - criticism of that is not going to be helpful to them.
Anne

And further to Anne, and forgive me if someone already made this point, but the media does have a tendency to edit, distort through selective context and just plain dissemble. And the more famous the subject, the more sensational.

D2

My daughter bought the magazine so I was able to read the article. Personally, I found nothing wrong with the family dynamics in the article.

I'm all for whatever works for your family. Not any one method is the "right" one when you're dealing with cancer, it's whatever works.