Hello, I was just diagnosed with cancer on the side of my tongue and probably my lymph node. All on the left side. Has anyone watched Crazy Sexy Cancer? I am going into Duke,and Johns Hopkins next week to see what they have to say, but I am torn and wonder if I should be going a differnt route. I'm 32 not a smoker or drinker. Wish there was the best of both worlds somewhere. Off to work:)
Alas wishing, as I'm sure you know, doesn't make it so. My recommendation - and I'm confident just about everyone here will agree - is that you listen to your doctors. You're going to some of the best ones in the country at those institutions and they know about cancer.
Smoking and drinking are hardly the only route to H&N cancer. It may well be that like me you're HPV positive. You can read up on the connection here at OCF.
I'm not denigrating the young woman who made that film. I admire her positive outlook. I think you'll find that most of us here share that sentiment.
Eating healthy food, exercising and generally trying to live a stress free life are all wonderful adjuncts to real medicine. Which is what you need right now.
I wish you the best of luck!
David 2
(PS couldn't agree more with your signature: finally feeling up to it, I got myself a rather large shelter pup back in September; we needed each other)
Welcome to OCF! Why would you consider treatment for this aggressive cancer by any entity other than the top medical and research institutions? Medicine is a science and with it are proven and effective treatments based on intense research. No wishful thinking, magic salves or chanting will have any effect on this disease. If you want a chance at a successful outcome, stick with the big guns. Johns Hopkins and Duke are great places. Your treatment will be tailored to your specific form of cancer and will follow a protocol based on research. There are many on these boards who have endured the difficulties of this disease, ie radiation, chemo, and surgery, and are around to tell about them. You will get a lot of valuable support here. Get your head out of the sand and ditch the holistic junk. That stuff may help your emotional side but will do little to help you beat this disease. Good luck!
HPV is not likely associated with his cancer if it is located on the side of his tongue. We have seen a new group of OC patients in the past 3 years emerge that present themselves just like you do, cancer on the tongue, non smoking, casual drinker and young and they are almost always HPV negative. These cancer act just as aggressive as tobacco related OC so your best advice is to seek the very best OC specialists at a CCC like Duke and JH. Good luck next week and let us know what they say.
Welcome to OCF. The only cures for oral cancer are radiation with or without chemo and/or surgery. All oral cancer patients who are still here have wished for an easier route. This is a fast moving deadly disease that not everyone will get thru. There is no easy way around this. Its not an easy fight, but it can be done. The cancer centers you mentioned are both top rated. They are your only chance for a long happy life. Best of luck with everything.
Unless you are an Aborigine Shaman living in the Dream time, the subject of your post should be
[quote]Newbie Torn between dying of false hope or being cured.[/quote]
Talk about comparing apples to oranges: Crazy Sexy Cancer involved a very rare form of cancer of the blood vessels that less than 300 people a year get with a tumor that almost NEVER metasizes (EHE). Hard to imagine a cancer more unlike tongue cancer. More power to Kris Carr for making lots of money peddling her 90 minute session of "Power Storming" crap for only $47 on her web site. I couldn't do it with a clear conscience. Don't think you're going to find many fans here.
[quote=davidcpa]HPV is not likely associated with his cancer if it is located on the side of his tongue. We have seen a new group of OC patients in the past 3 years emerge that present themselves just like you do, cancer on the tongue, non smoking, casual drinker and young and they are almost always HPV negative. [/quote]
Sorry off topic but I wanted to ask about this- how do you know its not HPV if its on the side of the tongue? thanks
So far the only HPV studies that we have said that the HPV virus seems more likely to attack the cells found in the Base of Tongue and Tonsils and similar cells found in the anus, penis and cervix to mention a few.
Brief history, it used to be that the overwhelming likely candidate for OC was a elderly man who sat in a bar and smoked and drank his adult life. Then about 10 years ago we began to identify another group of OC patients who were not smokers, mostly male whose cancer was mostly in those 2 areas and the HPV virus was soon identified as the cause. About 3 years ago studies concluded that the typical HPV positive OC patient was a white male, born after 1948, non smoker, casual drinker, Primary in the BOT or Tonsils, often mets to a node or 2 and college educated. In fact if one presents themselves like this you have a 70+% chance that your Primary will test positive for HPV. The studies also concluded that HPV+ OC responded better to conventional treatments; had a better survival rate and had less of a chance of a recurrence. Then about 3 years ago I started noticing what I will call a 3rd group posting here who were younger still, males and females, non smokers, etc but their Primary was in the forward part of the tongue or oral cavity. They didn't test positive for HPV and their cancers appear to be just as aggressive as tobacco related OC. No cause as of yet has been associated with this 3rd group and the treatment remains fairly uniform for all 3 groups but there is talk of somehow trying to reduce the side effects of the HPV group since it has preliminarily shown a better response to Tx but no studies to my knowledge have been approved towards that end.
Imitation is the sincerest form of flattery so I'm going to paraphrase Gary's post on another thread;
[quote]There is indeed a 100% holistic, natural and entirely organic remedy for oral cancer: DEATH.[/quote]
thanks Gary
Charm
David, thanks for the info. I hadn't known that about the non-HPV related tongue cancer incidences. I sure fit the profile of the HPV positive one though.
Whitma30, hope these posts by people who've been through it are helping you make an educated decision about treatment! (read: a medical one)
D2
Thanks for your imput:) I am just torn. I know ppl have been made cancer free through radically changing their lifestyle, especially what they eat. That is a fact. But, I am sure I will get surgery anyway! Going to Duke, then Johns Hopkins, then Mayo in Rochester! All in 4 days! I want to go see a Dr.Mark Urken in NY I hear he is the best but he isn't in-network with my insurane. Has anyone heard anything about Eric Moore at the Mayo Clinic?
Oh, and I'm so glad you rescued a dog:) I volunteer at the greatdanerescue.org in NC!
Oh,and just for the record I have totally changed my eating. Hopefull it will help me heal faster!
Thanks for the welcome! But traditional medicine is not the only way! Does anyone realize what kind of garbage we put in our body everday? Cancer is on the rise not the other way around! I just don't know why ppl aren't trying to figure out why our bodies are reacting this way! If western medicine is so great than things would be getting better and there would be less cancer. But, doctors are just treating the problems. And where is all this money going that is raised for cancer? I feel like I seem to be the only one with my head out of the sand and everyone else is to scared to look around! Scared by doctors and scared by ppl who don't understand when someone doesn't want to be like the rest of sheep! If we want less cancer we need more leaders and less followers.
They are interesting that is for sure! I feel like I'm in one of those walking dead movies, where I have to pretend I'm "just like everyone else" or else I'm Lunch! But, this has been my life story, so why would this be any diferent?
It's ok I know everyone here has been through alot to say the least, and today is only my 2week "holy crap I have cancer" anniversary:) I just want God to use me and this cancer to help someone, anyone and that may mean going against the flow a little:)
Sincerley,
Always the black sheep,
Jennifer
Jennifer,
Going against the flow with holistic medicine when facing oral cancer will not help someone, it will just lead you to an early grave. 20 years ago my probability of living a normal life after treatment (which I now am) would have been an outside possibility. The advances in today�s technology mean I will now be able to see my son grow to be a man.
Don�t be a martyr on the altar of holistic crap!
I think you get the gist of what the people on the forum think. There is little question that you are laboring under a lot of misconceptions about any success that holistic medicine has had against cancer. It doesn't work, plain and simple. I know you can find lots of things on the web that say otherwise, but the web is the wild west...anyone can say or claim anything. IF YOU BELIEVE THIS UNSUBSTANTIATED CRAP, you in good faith follow their plans, and you will likely see your cancer continue to a more advanced and harder to treat state. Eventually it will become untreatable when you finally give into the reality. THEN IT WILL BE TOO LATE TO CHANGE YOUR MIND.
This is not a game. Do you not think if the holistic approaches that allowed people to avoid systemic chemo poisons, radiation and more, would be used by everyone if they worked? None of us want to go through what we did to beat cancer, but we're still here to talk about it and help others having done so. You can choose to listen to the people that are still around here on these boards and doctors at major cancer centers, or you can choose to believe what you are reading, that is not peer reviewed, or published in a major journal with critical review. It's up to you. No one here wants to see you make a mistake, but the debate you are drawing people into because of your lack of information is a waste of time. This has all been debated by way smarter people than you or us.... and holistic medicine didn't win the discussion.
But this forum isn't about debate. It's about helping people get through tough times. We have had several posters that chose things other than conventional therapy with a proven track record before. Some chose religion, some chose herbs, some chose diet. Please notice that none of them are here today to post to you that they had success. I suggest that rather than get into a debate with everyone about something that you do not have a lot of knowledge about yet, you wait to post further about your beliefs until you have been through your evaluations with some certified clinical oncology professionals. When you want or need our help to sort though the issue that will inevitably come up, the generous and caring people of this forum will help you. But this debating whether a holistic or conventional path is the right path discussion is a waste of everyones time. We have now tried to talk you out of going away from what has proven to work. I think that the posters here should not get embroiled in a debate over something that evidence based research has established the facts of. By the by, God is not using you to show people a better path or chosen you to enlighten the rest of the world..... If a God is allowing your free will to take you to a path that will end in your demise, it is more likely that He is setting a negative example. Something it would appear he does frequently given all the suffering in the world. Free will is a dangerous thing when combined with a lack of information.
Jennifer,
My wife and I have 2 85 lb rescue dogs. Let us hear what your cancer docs say.
Jennifer
Interestingly enough the Washington Post just ran an article about the Chinese Authorities closing down a uberpopular health talk show host for publishing a best selling book
"How to cure the Diseases caused by Eating by Eating the right foods"- sounds like you were able to get a translation.
It's not a "fact" that people have cured their cancers by "eating right". Or rather it's an "internet fact" like the fictions that Eskimos have lots more ways to describe snow than we do (false). But as Brian said, we're not here to debate you.
And as far as being a Leader, you are on a very similar path followed by many many others. No doubt you will get conventional medical treatment from one of the excellent Cancer centers you are going to go to. That will "cure" your cancer but then you will blithely ascribe your cure to whatever diet of the day you've been sold. I've seen that happen here on OCF before.
Oh, and the radiation, chemo and surgery didn't really cure me either, it was drinking a bottle of beer each night.
You can check it out on the Internet.
Charm
Jennifer, Let me first say I am not a health nut per say however - I am a vegetarian - I eat no fish, meat or dairy. I do have the occasional egg. (I don't eat dairy because I have an allergy to it) I don't drink alcohol, or smoke, and don't do drugs. I try to eat organic as much as possible, and any eggs I eat are organic from grain fed free run chickens. Plus I go to the gym at least 5 times a week - walk with my dog once a day and play ball with him every morning. No one in my house smokes and I work in a smoke free environment - and I still got cancer. I do believe that a healthy lifestyle will help you with your recovery I do believe that some Chinese medicines have value however when it comes to cancer despite the trauma of the treatment - it's best to seek out the best in their field and do what they say. So go ahead change your diet and lifestyle, I have no doubt it will help immensely in how you feel, but stick with the tried
and true on the medical front - and if you do try to do some alternative therapies in tandem with your regular treatment make sure your dr.s are well aware of it. I am 10 days post dx - and yes my pooch is a rescue dog! Best of luck!
Btw, forgive me I didn't mean Chinese medicines specifically - though much of the holistic treatments do find a basis in Chinese medicines. I meant alternative medicine. Have a good one!
Brian, God is good all the time! And He will use this for His good! Because He is the good, to say the least! He has a plan for my life and yours Jeremiah 29:11. I am actually excited about what He has already done through this and thankful! I am not trying to be rude but when you say "we" maybe you should just say "I". I don't believe everyone on here feels the same way as you. This isn't high school so don't be the bully! The hard fact is that I have cancer and I will probably have the surgery like I said before. But!!! I have radically changed my lifestyle and will continue to do so!And I am excited about it!
So if you don't want to be part of this post then simply don't.
Sorry your angry, and if you need support or anyone else I am here.
Jennifer
Reading the China Study as we speak:)
Hellow Whitma.... I too am in NC. My aunt wast treated here in Charlotte, NC. After reading this thread, I felt compelled to second Brian and others. Not to be redundant but this is a deadly cancer. My aunt was treated very aggressively for early stage cancer with no lymph involvement. While the radiation sucked badly, she is alive and doing very well. Back to eating normally and living her life. It is, of course, your choice to determine the treatment that is right for you, but if you screw around with this disease, the cost is likely to be you life. I hope that your death will not be the lesson used to teach others the importance of attacking this cancer with all of the barbaric treatments available today. Best of luck to you.
D
Jennifer, please take this response respectfully as I mean it very much to be so.
You may not realize that Brian Hill is the founder and leader of OCF. It's because of him that we're all here, and a more compassionate presence would be hard for me to imagine. Like the rest of us, he's trying to guide you toward saving your life and not throwing it away on wishful thinking.
If your faith and changes in your diet help you, that's great. But what's even better is the news that you're going to all those cancer centers, some of the best in the country, and that you intend to get the surgery you need.
I hope you listen to what your doctors tell you, that you continue to eat right, save dogs and everything else!
Thanks for listening.
David 2
Jennifer,
I can only second what everyone else is saying, particularly Brian. Please don't wait around hoping for a miracle. I am also glad that you are seeing the top docs in the country. Listen to them, Brian and all of your friends at OCF. Good luck!
Jen
If you are actually reading the Chinese study then you will start eating tremendous amounts of mung beans (until you realize what the Chinese authorities did, it's false) Brian is not angry at you nor is anyone else here angry at you. His post is as far from "bullying" as possible. It's just that on OCF, posters can have their own opinions, just not make up their own "facts". You just ignore your prior posts which insult everyone here as though you actually know something about oral cancer but we have all been "tricked" somehow by traditional medicine. Let me be the first to call you on your bad attitude. In Catholic theology, you would be deemed to be "vincibly ignorant" which is actually worse than "invicible ignorance".
It could just be a vocabulary issue or maybe a basic grammar issue. When you use the conjunction "or" in your subject line, it means you are going to pick one or the other, either holistic or traditional medicine. Holistic means different things to people. We all recognize that its much better to eat healthy and pretty much all the OCF posters are in fact "holistic" if you use the reasonable American Cancer society definition: [quote]In mainstream medicine, a holistic approach generally means a more inclusive approach to a person�s health, one that includes the patient�s social and cultural situation as well as his or her illness. This term holistic is used by doctors to reflect a focus on a person�s overall health, a focus that includes prevention, rehabilitation, and other approaches, rather than illness alone. [/quote]
No one quibbles with that. Unfortunately as the ACS notes
[quote]Available scientific evidence does not support claims that holistic medicine, when used without mainstream or conventional medicine, is effective in treating cancer or any other disease.
[/quote]
Take a look at their webpage on this issue
ACS holistic medicine IMO you owe Brian an apology.
Charm
Your time is limited right now. You should be trying to learn about your cancer and what will happen with treatments instead of being argumentative. Your life is about to dramatically change and you will go thru the hardest period in your whole life. You could find yourself horribly disfigured, unable to speak or walk, unable to eat properly again or worse yet, maybe the cancer will win. You will find some friends and family will turn their backs on you like you are a leper. You may be hospitalized for dehydration or malnutrition. You could lose your job, your home and eat from a tube. Now is not the time to criticize Brian for anything. He created OCF for patients and their caregivers to be able to find up to date, correct information and support. Get your priorities in order and prepare for the fight of your life! You may think you know better and that I am overreacting, I am just being brutally honest with you.
The worst day of my life was when I was too weak to walk and my teenaged son had to push me in a wheelchair into the doctors office. My doctor took one look at me and admitted me to the hospital. My own sister turned her back on me. She had promised to help me and when the time came to step up she was 'busy'. Prior to my life with cancer, I was a relatively strong, healthy person. Now I am disabled.
From here on out, I will focus on helping other new members instead of wasting my time with someone who doesnt appreciate it and 'knows better'. I owe Brian a huge thank you for creating OCF. As do you, right along with an apology!!!
Jennifer,
You said probably your lymphnode, either it is or isn't. Did you have a CT/Pet Scan? What stage?
I'd listen to the above they are very knowledgeable. I didn't take Brian's post as being a bully he was giving you advice, I'd take it if I were in your shoes.
Hope all goes well for you at your appointment.
Connie
I'm sorry you took my post to be bullying. That wasn't the intent. Truth is we have had people on the boards over the last ten years that are looking for alternatives, and trying to help them wasn't fruitful when their minds are made up. I just wanted to stress to you that these boards are not a forum for exploring alternatives. There are other sites out in the web that are. We deal in evidence based information that can be substantiated or personal testimonial of experiences. These boards are also open to people of many different belief systems, including people that have none at all. That is why the agreement to use them states clearly that religious diversity is the rule, and that to the extent possible we keep religion out of the boards.
I will stay away from your postings, until they wander across the rules of the forum. Then I or another admin person will intervene. None of this means that I do not wish you well in your battle, and the most rapid return to health and a normal life possible.
Jen
You posted [quote]I know ppl have been made cancer free through radically changing their lifestyle, especially what they eat. That is a fact[/quote].
Can you share the names of these people? If it was the woman on Oprah, Kim Tinkham, she has died of that cancer which was "cured" holistically on Dec 7 of this year.. If it's Suzanne Sommers, she had conventional surgery which saved her, but she can't sell that. The crazy sexy cancer gal has a cancer that is so slow moving and "indolent" that patients usually have 20 years and she's done 7 so no difference if she had done nothing but she does go to Dana Faber and is eagerly awaiting conventional drugs. I have not been able to find any real person. All the ABC 20/20 Special patients who were on TV swearing by their alternative cures are all dead of their cancer, usually within a year of TV. As far as I can tell, without exception, each and every "testimonial" you find on the Internet about non conventional cures is due to one of three causes:
1. The patient never had cancer to begin with. It was either an erroneous diagnosis by a legitimate doctor or a diagnosis based on an unscientific and unvalidated test used by the alt-med practitioner. This is more common than one might think
2. The patient underwent partial conventional therapy before abandoning it for alt-med (for example, an excision but no radiation or chemotherapy, like Suzanne Somers or Lorraine Day).
3. The patient still has cancer but, like Kim Tinkham, has been told by her practitioner that she is �cancer-free.� If the tumor is slow-growing, this may be convincing for many months or even a few years until they die like Kim did.
So please share the name of these people you know for a fact have been cured. I mean they must have names right? And if you know for a fact they have been cured, you must know who they are. Or is it that you have been fooled? As an obviously very religious person, shouldn't you be more wary of such snares of Satan? Don't you know the Prince of Lies is behind almost all of these internet scams, stroking the greed of the fraudsters?
But prove me wrong and pony up the names.
Charm
As I read through this post I am very discouraged at the way people are treating each other. With that said I agree with Brian, Christine and the others. I am a two time survivor and had surgery, radiation, and chemo. Yes, the treatments are no cake walk, but I am alive today to see my kids growing and learning and Love every minute of it. You really do need to listen to those Doctors you are going to see. I fthey suggest surgery, rads, and chemo and I would do it. They know what they are dealing with and have helped many others going through it. I will tell you right now that OCF has changed my life, and I have Brian to thank for that. Without Brian we would not be here encouraging and helping one another through a difficult process. before, during, and after treatment.
Hey Connie,
Yes I have had CT scans and biopsy but not a biopsy of the lymphnode. Yet! But they are 99 percent sure the lymph is involved. Stage 3 only because it has moved into the lymph.
Staying posative,
Jennifer
Well Brian,
If I can't say God is good on this forum than perhaps this isn't the forum for me. I was recomended to come on here for support not discrimination. It seems and I'm sure everyone will disagree, but it seems everyone wants me crying in a corner somewhere just waiting for the roof to fall in. But I am just not that person. I am however getting my body super strong , my mind super posative, and my soul at peace. And even though I am ready for a tough fight(probably tougher than I know) I may lose the battle. But at least I will know in my heart I gave it everything I had and maybe just maybe this combo of traditional and holistic will work and I can help others! If not well then no more anoying Jennifer:)
Oh and since this may be my last post, I have one favor to ask?
Please everyone save a rescue dog!!!! Talk about lifting your spirits! It's amazing!!!
Love
Jennifer,
I try to stay off of these topics myself but it must be the season compelling me to share...I don't know.
You remind me of a story about the Believer that was stuck on a rooftop during a massive flood. The Believer cried out to God to be saved. Just then a man on a plank paddled up and said, "Jump on we can paddle to safety!" "No, God will save me!" the Believer cried and the man paddled away.
The Believer cried out to God again..."Save me God for I believe!" ..just then a couple in a row boat came floating by and they yelled for the Believer to swim out. Again the Believer said "No, God will save me!"...and the couple rowed on.
The Believer cried a third time for God to save him with the faith that could only come from desperation as the waters became higher and faster. Just then a helicopter dropped a rope latter and the rescuers yelled for the Believer to climb up. Again the Believer cried "No! GOD WILL SAVE ME!" Just then the waters overtook the Believer and he drowned in the raging waters.
The Believer then found himself before God and cried "God why did you not save me for my faith in you was unwavering!" God answered..."Child, I sent you a plank, a rowboat and a helicopter..." This was as close to the original story as I could remember...but I hope you get the point.
You are just starting down this path with cancer, it's a path you've never been on before. We've been where you are now, we know the road as only those who've been on the road could know it yet you seem not to want to listen the wisdom being shared with you. It seems to me you are more interested in rescuing dogs then you are yourself.
I like to study scripture and occasionally share it when I feel it's appropriate. Matthew 7:6 is one I think you should familiarize yourself with...and then realize that this forum, the knowledge and experience of the "survivors" on these forums are pearls.
Eric
Jennifer,
This is your topic so if you wish to bring God into it that's well within the rules. I have carefully read the responses to your posts and I truly believe that the posters have responded out of love for you. No one wants to see another die from this horrific disease. We have certainly had our fill of death here.
I too am a Christian, have been in my church's worship team for over 20 years. I believe that Jesus empowered the Apostles to heal the sick and to pass that on to the disciples (so why not doctors). I also believe that God works through the doctors and it doesn't matter whether they are believers or not as God can use any person or circumstance for his glory. See Acts 12:5-16 NIV
Many elements of alternative medicine are either based on New Age or witchcraft. Please - speak with your pastor about this! See 2 Cor. 11:13-16
Just for the record, I lived in China for 3 weeks while assisting a medical device manufacturer there with regulatory affairs issues. I was able to tour several hospitals and Western medicine is quite routine in China. Even the most run down hospitals had mammography, MRI, PET scanners, RT, etc. Acupuncture and herbal medicines were offered as an adjunctive treatment.
There is no easy way out. My own cancer experience was a time of great communion with God and a life changing experience. Was the road difficult - absolutely, but God had a plan for this and that was very simply to serve others. He equipped me long before I had cancer - Billy Graham Crusade counselor, 9 months of formal Lay Christian Counseling Training (LCT), 15 years in AA, and 8 years here. Not to mention that my father, sister, (my mother had melenoma, a radical mastectomy and cervical cancer but died of a heart attack) stepmother, 3 dogs and many friends have all died from cancer. I have been a caregiver as well as a patient. See 2 Cor. 12: 7-10
I was given a 26% chance of 5 year survival.
There are no bullies here - only people who are passionate about serving others - sometimes a little tough love is in order. We just would like to see you remain on this side of the grass so that God can use you for his good purpose.
Jen,
Nobody wants you off "crying in a corner somewhere" but the wonderful, compassionate people here have been where you are. They know what they are talking about. We are not asking you to give up your faith - my faith helped me cope the past year and a half. I am so thankful that I found OCF. There is so much more emphasis on other cancers, that I feel blessed that I have a place where I can come to people who have been through just what I have, and more!
P.S. I agree that shelter dogs rock! My son has four! (plus 2 cats)
I think Gary's post (4 up from this one) is beyond insightful and hopefully you will find it provides you with some comfort and assistance.
No one here wants to restrain you - our only goal is to help. I wish you peace and acceptance in 2011.
Donna