Just over two weeks ago I walked into Stanford Emergency and was almost immediately diagnosed with a 2" tumour at the base of my tongue. Last Saturday I had an MRI and I have a PET scan scheduled for the 23rd. We are currently looking to see if the cancer has spread. I was diagnosed 6 months ago with TMJ disorder, so there is some fear that it has spread to my jaw. I should add that a biopsy has shown my cancer to be HPV 16 positive.
Honestly, this forum scares me a little.
I am in good health, and good humor, otherwise. But I am alarmed at the above introductions. I begin radiation therapy soon and have no idea what to expect.
Im being treated in Santa Clara.
Welcome to OCF! You have found the best place to get info and support for oral cancer. Im sorry if you are scared by the things you read here. By reading this site, you will find important info you should know so you can better advocate for yourself. I know a cancer diagnosis is scary, most of us are afraid of the upcoming unknown things that we are going to face weather we want to or not. You are in the right place, we have been where you are and will help you.
You are probably very busy with appointments right now. Before you begin treatments you should have a complete dental exam with flouride trays made. You should also have a full blood work done including thyroid and testosterone levels. These things are very important.
One of the biggest things to do to help yourself get thru this easier would be something that is within your control, your intake. Every single day, starting now you should be taking in a minimum of 2500 calories and 48-60+ oz of water. These numbers are DAILY MINIMUMS. I cant stress enough how important this is, it will make a huge difference in how well you do. Starting now and continuing thru until a year after you finish rads, let these numbers be your daily goals.
Stick with us and we will help get you thru the upcoming rough weeks. It isnt easy to battle this cancer. Hopefully you will be one of the lucky ones who sails right thru. Believe me, if I can do it so can you!!!
Best wishes!!!
I'm sorry you have to be here but under the circumstances it's the best place for you to be. Lots of love and advice from people who have been there. You're about to be overwhelmed with info. So far it sounds like our situations are very similar. I blogged about my experience at
www.iwishihadbetternews.blogspot.comBest of luck to you! I'm sure we will talk soon.
Steven,
So sorry you are going to have to deal with this crap but this site will be a huge benefit throughout your Tx and recovery and you will recover.
Thank you for your support.
So let me ask. What are my alternatives? Do I allow the medical profession to draw me into this chemo/radiation treatment or do I find something else? Is there anything else at all that I may do?
Currently the only way to eliminate the cancer is thru surgery and/or radiation with or without chemo. Those are your only options.
The only thing you have that is within your control is your intake. That needs to be your focus starting today right thru until a year after you finish your treatments. Your body is going thru so many changes and is under so much stress battling cancer and trying to heel itself you need good nutrition.
It seems like you are not satisfied with your options. A second opinion is always a good idea. Below is a list of comprehensive cancer centers (CCC). Those are the countries top hospitals to treat cancer. They use a team based approach where all the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and go with it.
CCC list US News Best Hospitals List
Ditto what the others here have said. Rads and chemo is the treatment for your type of cancer. There are always people who will try to sell you a miracle cure etc... but really - the only way to treat this is rads and chemo/ surgery or a combination of the three. Rads is not fun... in fact it's scary... but it is doable.
Alternately eating healthfully will help with strength and immunity. Hugs and welcome.
You want this thing DEAD! I had a friend explore the holistic approach. If it doesn't work, you are much further down the road and possibly flirting with quality of life issues. At best, you will wonder about every sore throat from now on. There have to be people who have taken that approach successfully. I just haven't met anyone.
The treatment plan I was on has a track record of working along with the requisite percentages of success. After my "all clear", I sleep like a baby. I still have percentages to think about but I am certain I did everything I could to kill that lousy disease.
This is for certain: whichever path you choose the wonderful people on this board are right there with you!
I can understand your fear/unease when browsing these forums. I too was a bit nervous and fearful. Cancer is no joke, there is no other proven treatment than the surgery, likely rads and possibly chemo approach.
I hate to be harsh, but I challenge any drum beater, anti-cancer diet pusher or alternative medicine groupie to show me the data.
There are folks who say that its all big pharma pushing these expensive treatments... These alternative paths are bovine feces, and please don't get caught up in it due to fear. They are people looking to make a buck off of your very real fear and should be covered in honey and staked down the nearest ant hill.
Now that you know how I really feel: I do believe it's a very human reaction to look for some less scary way to deal with things and very understandable, but it will not help.
You have to accept you're in it for the battle of your life and get ready to fight, because it will be tough, but this board will help you get thru it.
In fact, I am happy with the care I have but looking for viable *choices*, not conspiracy theories :-) But I thank you all for your feedback. I have tried medicine by statistics, and can't say that it has been especially effective for me. I am thinking of blood pressure treatment, for example. In addition, my mother died a few years ago of bone cancer and Leukemia, disorders brought on by treatment for breast cancer.
Forgive my caution.
So, I've heard that it is going to be tough but no one has given details. I was told that I can work during the treatment, my work is cerebral (I am finishing a book). What, exactly, do I have to look forward to. Is it going to hurt, and if so how? Am I going to feel queasy, if so, how long will it last? Am I going to have control of my colon? If not, why not?
What do I eat, do I eat? Consuming 2500 calories already sounds a challenge.
I should note that I am 6'2" and 217ibs currently, and apart from this in good health.
I wrote and deleted a response because it sounded flippant and that is certainly not how I would want to sound. This Saturday I will be at a SPOHNC meeting with a dozen head/neck survivors, no two of which had the same experience. You can read up on the drug they recommend and ask about it here and some will say they had no issues at all while others were forced to change at some point. I think it's universally agreed that radiation sucks.
My experience: I was a 6'2, 205 "elite level athlete" (the docs words not mine) when I started. I declined PEG tube and port for the duration. Figured I would just stop losing weight at 185. I was 185 for 15 minutes on my way to about 160. I worked for 6 of the 8 weeks of treatment and had to stop while on fentanyl for pain. For the life of me I can't remember how I hurt to describe it to you. That's weird...
That was 3 years ago and I weighed 200 even this morning.
I don't know if ones response to chems is predictable. I'm guessing it's not. I had NO side effects from Cisplatin (other than mild hearing loss) but someone will write in a bit that they had lots of issues. Pretty sure that many will tell you to try and put on a few pounds before you start. Once in the fight, food and WATER are what keep you going. Fall behind and you will know it and it is hard to get caught back up.
As said, and being you asked, no one can tell you everything that will or will not happen. There are common side effects likely to occur, not so common that may occurr, and rare events. It also depends on the type of radiation, the dosage, the fractions, where radiated, if one side only, and or if the salivary glands are spared, which usually are to some extent, the type of chemo, combination of chemo, duration, dosage amount, and speed of infusions, and any underlying medical issues, comorbities, and general health that may matter.
As far as I'm concerned, radiation was no walk in the park, but was nothing compared to my first chemo, and many may underestimate it, I did. I thought nothing could knock me down, and that was my profession not to, and was in pretty good physical condition at 5''9", 245lbs at diagnosis, which weight I would fluctuate from 275 down to 190, from exercise when I wanted (just as not as fast anymore lol). Well, after 5 days of chemo, that was it. I was down for the 10 count and worse! My treatmnt was stopped, and spent 6 months in the hospital, 2 months were in ICU, some on a respirator, tubes in every orface, and then critical care nursing home floor, paralyzed from the waist down, blinded, and left basically die. You name it, I had probably had it, and really am underestimating it. I went from 245lbs, probably more due to the inflammatory process from sepsis, septic shock, and lost over 110lbs in a few weeks going down to 130lbs. I had burns on my face, hands, inside mouth, throat, requiring the burn unit to debride the wounds. All my finger nails, toenails, and hair came off too. It has taken me over 4 years to gain back some weight, now 175, although last summer I went to 200, lost again, and got some strength back, but I'm a shadow of my former self, and after 30 years of working, I had to retire at a young age at 48.
What does this all this mean, nothing. Everyone is different, but I do look into things more now, consider different types of conventional treatments, thier hazards, cross reference any medical conditions, medications, vaccinations with drugs I will be receiving, do some pre-planning, have a plan A, B, and maybe C, so when treatments starts, I know I did my homework, and try to get through each day at a time, and attack any item as they may arise, if I can lol. Does this help, maybe, maybe not, but it does for me, and have no fear of the unknown.
To further add to what others said to get though treatment, although there is much more, is to get adequate nutrition and hydration, have pain, nausea and vomitting controls when needed, have impeccable oral care, apply neck protection creams, and get proper rest.
You will learn more each step of the way, may have more questions, but hope this helps.
Welcome, Damn HPV got me 1 1/2 years ago. I too was in great shape, ran lots of 10Ks. As to what you have to look forward too. Everyone is different. Some sail right thru others struggle right out of the gate. Being in good health should help, but rads and cisplatin may not care what shape you are in. I struggled week 1 then weeks 4-12. The two after treatment were down right awful. As you probably heard by now, getting food and water in you is kind of important. It will become your biggest challange. 2500 cals is tough when your healthy, Now you have to do this when you feel like you are swollowing razor blades and there a 50-50 chance it might come right back up and you will have to do it again. Some of us had to get peg tubes because feeding was just that difficult. Every day brings new challages and I spent most of my time (8 hous per day) tring to get food in me.
My advice to people is aways take advantage of the time you have right now to get as much stuff done as you can. I am thinking cars, garage, yard work, home repair. Simple things like taking out the garbage might become difficult. Get help you may need it. Always have a back plan to get your butt to treatment. Put your game face on, you have been drafted, and the best way out is thru the IMRT machine.
The good news 4 weeks post treatment life starts to get better. Stick with us thru treatment, you will be glad you did. Post as often as you like and ask lots of questions. For me it really pulled me thru the rough points.
Sorry you've had to join us but welcome...
I was diagnosed in May 2013 but less than 12 months later have finished treatment and life is pretty much back to normal for me... despite it being undiagnosed for over 6 years (due to a hospital error). I was Stage IVa.
My experiences and from reading these forums is that people react differently. I certainly didn't expect my life to be this normal less than 12 months later.
My thoughts were that I wasn't supposed to have this cancer growing inside of me and I wanted to hit it with everything I could - I was only 39 years old when diagnosed and the mum of 2 young kids and a business owner whose business employed others - I wasn't going to be beaten.
I jumped at the chance to have it all surgically removed (BOT - base of tongue surgery and right neck dissection), and then blast it with chemo (cisplatin) and rads concurrently... just had a follow up CT scan 2 weeks ago and all is clear.
I found surgery the toughest to start with, trouble swallowing, etc but within 2 weeks of that was OK enough. Chemo I suffered permanent hearing loss so didn't finish the whole course but it hasn't affected me too much long term. I've got permanent ringing in my ears but you get use to it. Radiation started off easily and I only lost about 3-4kgs but after the course of radiation finished I lost another 10kgs.. I am still now 13kgs lighter than when I started treatment but I'm now counting that as a benefit (got to look at the positive side of this disease). Definitely the other hardest bit was the very last week of radiation and 2-3 weeks after it had finished. So sore, not being able to eat and hardly even drink but knowing that you had to. I don't think I was generous enough to myself with my pain medication but hindsight is a wonderful thing.
Get lots of people's experiences but try not to be scared by them either. I'm a bit of a control freak so wanted to know the range of experiences of everyone and found comfort in knowing I was in the lower range or higher range of these when I was going through treatment.
My BOT tumour was less than 2cm so yours is larger. Find out with the surgery what effect, if any, it will have on your eating/talking.
Sorry for the book... it's no walk in the park but face it head on, organise support in advance and know that all of us in these forums will also be here for you.
My thanks Meli for your positive, detailed, and very helpful response. Yes, my tumour is too large for surgery.
I will not be beaten. I am going to cram to finish my book before the worst of it cuts in. I am rather concerned to hear today that radiation will kill the cells in my jaw bone. Anyone else know anything about this?
I continue to look for viable alternatives. What are the options for chemotherapy? What is Cisplatin?
Hello Steven - welcome to the family, though I'm sure you would just as soon not have to be here (same for all of us). I'm sure you are also absolutely blown away with the seeming enormity of this new situation; we were too. That's where the forum family comes in; some who have already endured it and come out the other end of the tunnel stick around to help the new guys navigate the maze that you will soon be in.
Please don't consider further any of the alternative treatments out there on Dr Google. Snake oil cures have been around since time began and they don't work any better now than they did then. This oral cancer you have kills people very effectively, it isn't kind, it doesn't heal on it's own. Doctors are what cure it and they use surgery, radiation and chemo. I too have thought what you wrote above about big pharma, BUT when I was diagnosed I didn't waste one second getting my butt to the doctor to get started with treatment. So far it's worked (I'm 4 months out of treatment) and besides the dry throat symptoms and loss of about half my taste for food, life has returned to normal though I'm 40 pounds lighter.
No one has mentioned it yet but HPV16 is really a blessing rather than a curse. It responds to treatment much better than the non-HPV oral cancers do, so your long term survival is likely better. If you have cancer this is an STD that you actually want to have. We can leave the discussion of the implications of having HPV for another day if you decide to ask about it.
But in the meantime you have some mental preparation to do, preferably even before treatment begins. The first and most important thing is to realize you now have no control over a certain portion of your life. How will your body respond to treatment, how many side effects will you have, how much discomfort or outright pain will you have to endure. Here on the forum you will read about MANY who have undergone treatment. Some of them had a pretty rough go of it, but not everyone. I was very lucky, my journey through treatment wasn't bad at all. How will your journey go, who knows. It will be what it will be and everyone is different are two phrases you will hear over and over on the forum. There are a few things you can control and many that you can't. That is why Christine emphasized above to work on what you CAN control; ie your eating and hydration. You do have that in your sphere of control and if you do it right your journey will be easier. Do it wrong and you can easily end up in the hospital, malnourished, on IV feeding and worst of all your treatment delayed until you regain strength. That has happened to more than one person who didn't eat and drink enough. You will lose your taste during treatment; no taste means no appetite, so you won't want to eat. You will have to force yourself to eat. You may very well get down to where you are surviving on Ensure or Boost (I did), seven bottles per day is likely what the doctor will tell you. Don't scrimp on it, you can lose a lot of weight quickly; ask me how I know this.
Okay enough for now. Start reading the articles on the OCF website, they are very informative and will answer many of your questions. For your other questions ask them on the forum. We will help you get through this.
Again, welcome to the family.
Tony
Thanks Tony. My physician made it clear that my HPV16 is a blessing.
However, I am a scientist and I will continue to inquire into alternatives. My guiding light in medicine is "do no harm" - as I noted earlier, I am not looking for conspiracy theories but genuine alternatives to radiation and chemo (and only between now and when my therapy is scheduled to start). If I do take the conventional route, and it seems likely at this point, it will be because I am fully informed, responsible for the decision and happy with it. I refuse to accept that major decisions like these are at all outside of my control.
Not only will I beat it, but I will do so happily and with the minimum harm to my structure and to my future. :-)
I love my neck and my living jaw, I'll not let go of them easily.
Hi Steve,
You have the makings of a good attitude. "Good" is not enough.
You are attached to a particular outcome, that could prove fatal, or it might just change your experience from "unpleasant" to "horrific," when the only difference is mental attitude.
The attachment to a particular outcome, should the actual outcome be different, will lead to suffering caused by disappointment and fear, as fear of a different outcome than your preference is directly proportional to the emotional investment you make in desiring your preferred outcome.
Your life changed the moment you received a positive diagnosis. By clinging to your preferred outcome, you reject this new reality in favor of a fairy tale. DON'T DO THAT!
Accept that you have stepped out of the reality that you were at home in, and into a new reality. A reality in which you are unfamiliar with, and one no one wants to experience.
Well, amigo, how well and how quickly you adapt to this new reality will, to a large measure, determine how well you fare going through the entrance.
The key to a (relatively easy) trip through those portals is the ability to recognize the change, and the ability to maintain an accepting attitude.
This disease is a killer. You want to defeat it in the first skirmish, and that means you want to use the best weapons available at the time and kill it dead.
Your reality is that Cisplatin (which prevents cellular-mitosis in fast-growing cells - which cancer cells are while sensitizing those cells for radiation) at the same time as you are getting radiation to kill those cells.
There are no alternatives with a competitive record of successes on this front.
Change your attitude from "I don't want to suffer something horrible to just to beat a life-threat" to "hit me with everything that will destroy this threat to my life" and you'll be fine.
The truth is not always pretty, but it is always the truth. Just like reality.
Best of luck to you amigo, and please do not be offended by my frank tone, I want only for you to beat this completely with the minimum amount of suffering possible.
Bart
Bart.
I assume that your "preferred outcome" is not simply that I live, but that I live without suffering. So this sounds like a "suck it up and accept the suffering" talk.
I will certainly do that if it is necessary, but not with any less an open mind and open heart.
Hi Steven,
That's not what it was meant to be.
What it [b]is[/b] meant to be is a warning that one's attitude going into this can have a large part in how much suffering one has to endure while going through this.
It is also a warning that one's attitude could lead to the least desirable outcome, if your death is that. That is, by seeking to avoid the most successful path because you wish to avoid the unpleasantness it imposes, one could easily insure that it returns. And kills you.
My approach, and I suggest it to you, is to go in to each meeting with the medics with a simple desire to learn what the reality of my situation is at the moment. The questions I ask are what can I do to minimize the negative and maximize my chances, however slim they may look.
I do not have a preferred outcome.
That makes it simple to keep an inner serenity. Hell, it's not as if each and every one of us is NOT going to die, whatever the outcome of this business might prove to be; and because none of us know when that event will happen, timing is not involved either.
Capishe?
I do have a preferred outcome. That is that I live, I love my wife, and that I finish a book on my research (preferably several of them). Not having a preferred outcome is not an option, it is too fatalistic for me. I am perfectly serene in this approach.
That said, I accept positively whatever is ahead, we are, as you say, all going to die one day.
Hi Steve,
I hear you! I don't think it's mutual and I regret that; but C'est la Vie.
I do wish you all the best, and I mean that very sincerely.
Bart
I just finished at Stanford 2 months ago. They are a top 10 in the Country facility and they did not disappoint. Since they are in your own backyard I would highly recommend them. Also, it looks like your situation is very similar to mine.
Hey Matthew. My physician and team are currently out of Stanford (Stanford Clinic is still on their literature and scripts) at a new oncology ENT group at Valley Center (nr. 280 and Bascome). Curious about your chemo treatment and radiation effects.
Steven,
Like you I needed to learn every thing I could about cancer and how I got it, and an in depth understanding of how the treatments actually worked. It really stressed me out and I had to go back to my bioengineering classes I took in undergrad to refresh how a CT/PET actually worked.
I know that no amount of people telling you to trust your doctors is going to convince you to do just that until you too come to the same conclusions after doing research with all available material.
I am sure you will dig in, lose yourself in it, stress the hell out of your Docs and come to the same conclusions. I was there 5 months ago. Bio and Chem were my least favorite, I preferred FIZZIX so I really had to crack some books.
When the Doctor was explaining the area of my throat that was affected Base of tongue and Tonsil ect. I said yes, yes the Waldeyer's ring. It really broke his spiel. He just paused, sat down, came to the conclusion it would be better for me to just ask questions... the poor guy looked like he was trying to pass his boards after the first hour
Best of luck on your journey, please ask any questions you can think of.