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Can't Find Prognosis

Ron Silver
Posts: 73
Joined: Apr 2013

Tonsil with multiple lymph node involvement (all on one side of neck).  HPV or not - was not tested apparently.  Was told Stage 4.  7 weeks of rad and chemo (1x per week).  Starting week 3.  Feel the docs are evasive as to prognosis.  One told me 90% 5-year sr, then changed it to 70%.  Other doc when told said he agreed.  Third doc really won't say. 

Search on net turns up a real dismal prognosis for Stage 4, in addition to apparently a near certain reoccurence.  Makes you wonder if it is worth going thru the treatment.  Anyone have any links or sites with info.  Thank you.

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

I say this, as we started looking I wondered the same thing. Our OTO nurse who is also a frined told us not to look because it is mostly BS,

After researching, we also found that most of the stats are for a range of 30 years. Yes 30 years ago the chances may not have been good, but with treatments today the number continue to go up.

Each case is different. Age, health (except for cancer), attitude, and being positive and using humor are some of the best medecine.

If you look around the interenet for survivors, the numbers are great. That is what to look for. 

Make sure you are at a hospital that deals with a lot of these types of cancer and the latest and greatest tech. 

My husband was just diagnosed 1 tonsil lymph nodes both sides and a spot on throat. We start Radiation in 2 weeks with weekly chemo. We are determined to be winners in this fight and nothing will stop us.

Hold your head up and beat this

Sandy

Ron Silver
Posts: 73
Joined: Apr 2013

Thanks for the response.  I just wish the doctors could be as informative.  Good luck on your journey-I am starting my 3rd week of treatment. 

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Good luck to you and come here often. 

I am new here but the survivors are great and informative and been through it all already. 

I found this chart by age and years. Looks pretty good to me. There is another site I saw and will post if I find it

http://theoncologist.alphamedpress.org/content/15/9/994/T4.large.jpg

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our little family. I'm sorry you find yourself here but I want to tell you first off to take a deep breath! I was laryngeal SCC stage IV with node involvement too. All on same side of neck, right side to be exact. I also had 35 rad treatments and 8 weeks of once a week erbitux (chemo type) treatments. Erbitux is more antibody based but that was used as my chemo. Many others on here have had the same treatment and many have had other forms of actual chemo based treatment. I have to tell you, I am just at my 9 month post treatment and my PET/CT scan from last week came back all clear or as we say around here...NED...No Evidence of Disease.
There are many many many of us just like that. Head and Neck(H&N) treatments have come a very long way and have become very successful.
I'm no doctor and I don't know your exact diagnosis but I must tell you, I think I would go for another opinion if I were you. I'm not sure what area you are in, I'm in Los Angeles but if you feel comfortable giving us your general location we might be able to steer you in the right direction to some good places. If you are close to a teaching hospital with a tumor board, I highly recommend going there.
As far as is treatment worth it, YES! I'm not going to lie to you, it is tough treatment but doable, very doable. You'll see in a short time how many people will be here to help you with this journey.
Now if I may make one super important suggestion.....stay off of the Internet, except for here, searching for data. Most of it is old, outdated and quite honestly could be written by anyone who claims to be someone! You will only make yourself crazy with worry. I myself refused to search anything but you'll hear from others who we told not to search and they learned the hard way. Freaking thsmselves out and worrying about things that end the end didn't even apply to them. I promise you, you can ask us anything. Even though treatment for most of us is pretty much the same, we have different responses and reactions to it. Since we all experience it a bit different we have many people who can help you just by telling you what worked for them.

Please consider reading some more responses and another opinion before deciding that treatment isn't worth it and that you've been issued a death sentence because you haven't. If I had to guess, I'd say your doctors might be on the older side or they don't know your case exactly.

Take care and again, no question is off limits.
Billie

Ron Silver
Posts: 73
Joined: Apr 2013

Thanks for the response.  Where I am at is the "big leagues" in this State.  Besides, insurance would not cover anything elses.  I don't believe or trust anything these doctors tell me.  One slipped up though when he said "We will cure it!"  And then said "Go ahead eat anything you want, its not like you are going to die of heart disease."  Huh?? 

Apparently, chemo and rad is the "standard" treatment anyway (7 weeks, with 1x weekly chemo (cisplatin).  Sounds like you made it to the other side.  I really really really miss the taste of food (and sleeping more than one hour per night).   Your taste buds come back??? 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi Ron,

Welcome to our family. Although I did not have your cancer, I had NPC (nasophrygeal carcinoma stage 3) when 12 yrs ago, in my 13th yr. My anniversat/birthday whatever you want to call it is September 28,2000. That is with 12 year old technology, I am having issues with late term side effects that they didn't even know could happen when I was treated and now its part of protocall for h/n cancer, speech therapy. Do it so you don't go 12yrs out and suddenly you can't swallow. Your taste buds will come back, changed just like you will be, things you used to like you may not anymore and same vice versa things you didn't like you might now. Your salvia I believe now adays comes back better than mine, wasn't really an issue for me I figured out how to use water to eat, now I can't have water so mouth is plenty dry. But even now, salagen was a trial drug given to some when I was treated to protect salvia, I was not. But now you can get it as a prescription to help increase it. Your road will be bumpy, you will want to toss in towel, but you can and will do this. If you are a person of faith, or someone who believes but alittle out of touch reach out to God for strength and pray for healing, he does give it to you. Stay positive, in order to handle it all I envisioned the rads and chemo as pacman going through my system and eating cancer cells ad when I closed my eyes I could see them and slept, sleep is important to rest and let your body heal itself.

Sorry so long winded, just thought you may want to hear from a survivor.

Stay positive, pray and trust your doctors, you don't need stats and chances, you need you battle plan and then you do it and concentrate on the end when you get to met NED.

God Bless,

Rachel

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Sorry that it is here... that being said, ignore the stats.. My husband has Stage 4a tonsil cancer, 3 lymph nodes involved, two of the lymph nodes were not encapsulated, so they left trails of cells. He we found out in October, November was surgery, exactly 4 weeks later he started radiation and chemo. 30 radiation treatments with a total of 66 greys. 6 weekly chemos, of cisplatin and taxol. 6 weeks later, he was hospitalized once for a week, and took it hard physically, lost too much weight and still on TPN intravensous feedings at night, but otherwise looking very good for 11-12 weeks out of treatment.

The doctors told us 75-80, 80-85, 85-90, and 95% in no particular order. One will say your have 5% more chance if you don't smoke, one will say drinking causes an impact, HPV causes an inpact. Since no one could really make up their mind.. besides the fact that they kept saying curable, very curable. That's what we are betting on.. and that's the outlook Dan has and I... we like the idea of curable. :)

Glad you found our little community, you won't be sorry if you should decide you want to stay around a while :)

Welcome,

Kari

Laralyn's picture
Laralyn
Posts: 449
Joined: Apr 2012

Ask again about testing the biopsy sample for HPV. It's not important for the treatment plan but it can affect the prognosis. It's also something you should know, just because I think you have the right to understand what's going on in your own body. They should still have the biopsy sample, so if they didn't test for it, request the test.

That being said, I understand the urge to see stats. I work with stats a lot in my job and wanted to see them too. I learned a few things during my treatments, though (for Stage IV tonsil cancer with lymph node involvement).

First, this is a great article about how to interpret and understand some of the statistics: The Median Isn't The Message.

Second, statistics are inherently outdated (a point made in the article). Technology changes quickly, and by its very nature a 5-year survival stat has to be at least 6 years old (5 years + time to write up and publish results). A lot changes in treatments in 6 years.

Third, even if the stats were correct, you have no way to apply them to yourself. You have no way to know which side of the statistic you are on until it happens to you. Certainly none of us would have guessed we were on this side of the stats for getting head and neck cancer, because it's a fairly rare disease. Even if the survival rate for a particular kind of cancer is only 10%, you could be in that 10% and you have no way to know until you either survive or you don't. There's evidence that stress lowers immunity and may also increase the odds of cancer finding a foothold in your body. Try not to stress over statistics--remind yourself that, regardless of the exact numbers, there is no way to know what side of the statistics you are on.

Welcome to the board, BTW! It's the club no one wants to join but you'll find the folks here amazingly helpful and supportive. :-)

Ron Silver
Posts: 73
Joined: Apr 2013

Thank you all for the kind and very informative responses.  I asked about the HPV issue and was told "It doesn't affect how I treat so it doesn't matter."  I think the best advise is given here-no more "Stage 4 tonsil cancer prognosis" google searches (besides I read them all).

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

there are only two for me. one you die and the other you live. 

if you believe you will live, if you maintain a positive mental attitude you will live, if you never, never, never give up you will live, maintain your faith and you will live

 

living is the only option!

 

john 

hwt's picture
hwt
Posts: 1944
Joined: Jun 2012

My cousin was told to get his affairs in order due to mets melanoma...that was 8 years ago and he remains today with "no evidence of disease". My brother was told slim chances with kidney cancer as they saw on lung too. Turned out two primaries, surgery on both and cancer free several years now. New commercial in St Louis says "2 out of 3 cancers is cured today. That, of course, is all types and stages of cancers but promising. I've also heard by the time study reports with percentages are published, they are already 5 years old so, dated results. Not saying your journey will be an easy one, just saying not all doom & gloom, lots to be optomistic about.

God bless!

Candi

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

the club nobody wants to belong to.  I learned early in the game to stay away from researching my disease (Nasophranegeal Carcinoma Stage III - T3N2M0), but not until I'd scared the begebus out of myself.  Once I found this site, I've never searched it again.  The information is too variable....and like Billlie said, it can be wrong or outdated.  My ENT said that in 6 months this cancer would be in my rearview mirror....that I'll die of something at some time, but it's not going to be from this bump in the road.  I just hung on to that.

So yes....treatment is VERY much worth the time and effort....and misery.  If you hang out on this forum for very long, you'll find everybody had pretty much the same treatment....I had 35 rads, and 3 Cisplatin treatments in conjuction with them....then 3 adjuvent chemo's after rads were done (Cisplatin and 5FU).  You will also see that everyone reacts differently to treatment....the only consitant thing I've seen is lack of taste and dry mouth. 

Anyway...what better site on the internet than one full of survivors??  This is the place for that!! Laughing

boardwalkgirl
Posts: 263
Joined: Jun 2012

My doctors say that they have found that HPV+ patients seem to respond better to treatment and have less reoccurance. They also said if I make it 2 years without a reoccurance the chance of it reoccuring drastically drops. I felt like it was definitely worth fighting at least once. I have always been big on quality of life vs quantity, but that is just my personal thing, I would never tell anyone else what to do. But that being said I felt like I defintely was going to fight and though the treatment was probably the toughtest thing I have ever done in my life, it is doable. I had too much life to look forward to to give up without fighting.

Ron Silver
Posts: 73
Joined: Apr 2013

"I felt like it was definitely worth fighting at least once. I have always been big on quality of life vs quantity...."

I share the same views.   Problem I have is getting accurate info from the docs.  My impression is that they care about one thing and one thing only-keeping you treating so they can keep billing, and that you keep treating until the cancer is gone or the treatments kill you.

This forum has alot of useful info.  Wish I would have found it sooner.  

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Like mentioned above...those are basically the only two basic outcomes you have...

Keep Treating you until they cure you, or until either treatment or the cancer does you in...

Don't get wrapped around the wheel with heavy thought on the subject...

For now, just take it as it is, you have cancer and you are getting treated... This is the best time ever in history to have cancer if you have to have it. Technology is at it's current peak, knowledge is better than ever.

Stay postive, look at the many examples of survivors here..., that's the prognosis you are seeking, the stats... Know you are going to get through it, believe that, and fight and work for it... You can make it happen.

Best,

John

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

I really wouldn't even consider them...

As has been mentioned, most are old an outdated. Not to mention stats are for serving a purpose most of the time. Without taking into consideration many, many variables...age, health, genetics, lifestyle, etc...

You are you, and it's unique to your situation...

I'm not sure where you got the information you were doomed for recurrence... I have never seen that information before.

As for your staging, most everything I have read would put you more at STGIII with the tumors being on the same side... But I am by no means a professional MD.

Like also mentioned, the biggest milestones are one year, and two years...from my understanding and my MD's. That is the highest time of concern for recurrence.

Hang tough, stay positive, and know that you will survive....

My Dx is similar, STGIII SCC, Tonsils one lymphnode, HPV+ - sixteen weeks, four chemo types, seven of which were concurrent with daily rads.

Best,

John

 

 

 

CivilMatt's picture
CivilMatt
Posts: 2977
Joined: May 2012

Ron,

 

Welcome to the H&N forum, where talk about statistics makes ears perk up.  Investigate your heart out, but don’t waste your time.  If there are some positive benefits to statistics fighting your cancer, have at it.

 

 As for the side effects, they suck, but if treatment throws out the intruder I am willing to play this game. 

 

I hope your ride smoothes out soon and your side effects are few and short lived. 

 

Matt

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm not sure what you meant by being in the Big Leagues of your state but if you don't like your doctors I would think that your insurance company would allow for you to seek care elsewhere even if it's an HMO. You are right however in that the treatment is pretty standard. I have nothing but positive vibes for you, I know you are going to be ok.
As for the HPV issue...positive vs negative, let me just say that I was all hung up on that too in the beginning because I'd heard so many times that HPV positive responds better to treatment. Meaning that the end result is usually better if the patient is positive for the virus. Well my HPV status was negative so the whole time going thru treatment I kept thinking "I'm screwed because I won't have as good results as the positive people"
It wasn't until I talked to my surgeon about it that he set me straight. He said while it's true that HPV cancer responds very well to the treatment, it doesn't mean that neg HPV doesn't have good results just as much of the time. As I mentioned before, I am now NED 9 months after treatment. My surgeon said it actually kind of frustrates him that so many stats focus on HPV and do it in such a way that makes only HPV positive H&N cancers seem curable. He told me (as did my rad onc and my medical onc) that they expected 99% cure rate...if not better! Now he still tested me for it but he said it was more about finding out what kind of cancer I had and where it came from because sometimes it makes a difference in how and what meds they use to treat the patient with. I'm actually one of the rare ones, no HPV, never smoked, very rarely drink, and I was 45 which they consider young...gotta love them for that! The only thing they attribute it to is second hand smoke exposure from when I was a kid.

Now about the taste thing, yes it comes back! I think I started to get it back around the 4 month mark. Now it's about 90% back.
Been meaning to ask you, do you have a PEG(feeding tube)? Many of us had/have one and it makes it easier to get nutrition when we feel like crap and our mouths hurt and nothing tastes good or like anything at all. Nutrition is so important right now and almost more important is hydration! Stay hydrated at all costs! You can find yourself dehydrated and in the hospital in the blink of an eye!
Also make sure even if you do have a PEG that you swallow even little nits of water throughout the day. Our swallowing muscles need to stay active or we can lose them, no kidding. Also make sure you do your jaw stretching exercises. Hopefully you went to a dental oncologist before all of your treatment started and had things checked out and they went over the exercises with you??

Hopefully I'm not bombarding you with too much info, don't mean to sound like your mother :-)

Take care,
Billie

Duggie88's picture
Duggie88
Posts: 542
Joined: Feb 2010

Welcome to our club. I am living proof that they let anybody in this club. I had stage 4 throat cancer and my surgeon recently told me I am going to die someday but it ain't going to be from cancer. I am alive today because of the advancement in treating this desease.

I can't ad much more to what was already said above. The great folks on this site can get you through anything. So hop aboard and enjoy the ride it can certainly be a bumpy one but we have spare tires and are willing to change a flat for you.

 

Enjoy the day

      Jeff

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Ron,

You , like I,  and probably everyone else facing cancer, read about everything you could looking for information and scared the bejeebers out of yourself.

Reading your post, the one thing that struck me was the docs being evasive. Where are you going for diagnosis /treatment? Is it a Comprehensive Cancer Center? Are you seeking a 2nd opinion? A key aspect in getting through this brutal battle is confidence in your "team". The docs should all be in agreement with treatment and prognosis. I find it unusual that they didn't look into HPV as it's an increasingly prevelent factor in H&N cancers. It also bodes well for treatment and prognosis.

The thing is with prognosis statistics is they are statistics and don't take into account the indivudulity of the diagnosis and treatment response. I've read thos same stats and given the alternative to treatment, I'll take the treatment. 

Here's a link that rates the top cancer centers. http:// health.usnews.com/best-hospitals/rankings/cancer  
As an example. I sought a 2nd opinion at Johns Hopkins (2 hours away and #4 overall, #1 for head and neck cancer). My local facility in which I had several issues with, wasn't even a certified cancer center! 

This is a great site and group of folks. 

Positive thoughts and prayers

"T"

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1804
Joined: Mar 2010

It is important to just focus on going through the process, and doing the things that you can do to live.  The staging isn't important by itself (by your description you are not stage IV, no matter what anyone says).  The HPV is an interesting conversation piece, but won't change how your cancer is treated.  And you will find different survival numbers quoted even by the doctors around you enough to drive you  crazy.  Your cancer has a favorable prognosis.  You will likely live to tell about it for a long time.  Focus on yourself.  Get things in order to get through the treatements as they will likely be challenging.  And welcome to the club. 

When you get a moment, read my bio.  If I were one to concern myself with statistics I would hve been dead long ago.  I am the poster child for not following  the statistics for this disease, the .0001th percent.  That just make me here talking about it like everyone else.

 

best to you.

 

Pat

 

katenorwood
Posts: 1832
Joined: May 2012

Hello Ron,

I have found this site very enlightening.  You see these folks keep us moving in a positive manor.  Most prognosis's are not worth the powder to blow them up with.  Seriously.  I have a different dx (adcc) and 5 yrs out is good, and down hill from there.  NOT !  I have linked with survivors that are now 20 yrs out.  Yes, make proper decissions on tx's that will combat this disease.  And focus on getting better.  We'll be here to listen, and encourage you !   Katie

Ron Silver
Posts: 73
Joined: Apr 2013

Thank you for all of the very kind and informative responses.    I am in a "better place today."  My initial posts were, after reading them today, very negative.  Time for me to finish reading all the info on this forum.  In response to some questions, I don't know what a second opinion will give me.  The diagonsis is accurate (can see and feel the tumor).  From what I have read on this forum, the prognosis issue is really on non-issue and it is self-defeating to focus on it.   Yes, I have a peg tube and I am using it in combo with mostly soft and liquids by mouth.  Again, I apoligize for interjecting negative vibes on such a postive focused forum.  

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

It's easy to get wrapped around the wheel..., hell you're fighting for your life.

When I was first told you have  cancer..., all I could think of was pale, frail, no hair, washed out people that whither away to nothing an die... That is far from the truth.. I would go to chemo, and they were people there with laptops, cell phones, etc..., that had only stopped in to get chemo during their work day... I'm like "what the hell", I thought this s.hit killed you..., LOL..

Like I said before, timing is everything... If you have to have cancer, this is the time for it...

Don't worry about getting down, we all do..., just come on here and someone will be happy to slap you around a little and back into submission...., "you must comply, LOL"..

Best,

John

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

who didn't come in scared....mostly from reading the internet articles on our diseases (it's so natural to want to find out more).  Don't worry about negative vibes, everybody feels that way some times....natural too.  You just hang around us and we'll keep you up and looking forward to the end of treatment and the beginning of healing....

p

ditto1
Posts: 630
Joined: Mar 2012

This is a great site and everyone has touched on most of what you need to hear.  I  had Base of Tongue IV with swollen lymphnodes.  I was lucky no surgery, 32 rads, 2 cisplatin chemo and 9 erbitux chemos,  NED in Jan 13, dx in March 12.  I had some rough times and these folks came to my rescue more times than I can count.  They never thru me off the bus they just brought warm blankets.  I managed to drive myself to 90% of my treatments even though I either had my wife or Emily my grandbabies mother with me.  Easy no doable yes.  I also use a wheelchair from polio and right leg amputation to add to the fact that God blessed me to manage to function thru the whole process. But back to the point of prognosis, we all have our scanaxiety which shows we want to keep the beast in its grave, but worry he may be back.  How ever we all have our destiny to meet our maker so the prognosis is we will all die, but with a little luck it will not be from the BEAST and be many years down the road, Skiffins got fishing to get done, Tim has an out house to build , we all have living to do.  So theres a STAT we can all agree on.  Good luck you will do fine and God Bless you and your family.  One day at a time and today we are alive.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Do not think twice about being negative, I don't see it like that at all. Besides every single one of us on here has been there, is there or will be there so we get it. You were simply questioning all the info you've been given from the doctors. It's all good and now you are part of a family that you can say anything to and we understand.
Glad today you feel better about things tho, that's always a plus.

Billie

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

I'm probably the more annoying one ...I too like to crunch numbers, know stats (it's too what I do for a living to some degree) and I answer to owners / management companies and the only tools I have to work with are "past indicators" future predictoins" and you guessed it, "numbers and statistics"... :)

 

Try taking a look at www.oralcancerfoundation.org ...forget google (lots of outdated info) ...  It is true you will go through the same treatments if you are HPV or not, but I do think you should find out if you are HPV. This site is great for advice as well ( as you have seen).

Bottom line is life is great and worth doing whatever it takes to be around for it :) (opinion alert on that one).

Keep us posted Ron.

Tim

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