Can't Find Prognosis
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.
Comments
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Don't Look
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
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Thanks for the response. Irobswife87 said:Don't Look
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
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.
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Ron
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.
Billie0 -
Love LifeRon Silver said:Thanks for the response. I
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.
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
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Thanks for the response.Billie67 said:Ron
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.
BillieThanks 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???
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Nice to meet you!
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
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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. :-)
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Thank you all for the kindLaralyn said: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. :-)
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).
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only two
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
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Ronfisrpotpe said:only two
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
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
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Hi Ron and welcome to
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!!
p
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My doctors say that they have
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.
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"I felt like it wasboardwalkgirl said:My doctors say that they have
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.
"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.
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Well Actually, LOL...Ron Silver said:"I felt like it was
"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.
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
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I Google Ron and Cancer and the prognosis is good
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
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Hi Ron,Ron Silver said:Thanks for the response.
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???
Welcome to our
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,
Rachel0 -
RonCivilMatt said:I Google Ron and Cancer and the prognosis is good
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
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,
Billie0 -
Hi Ron
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
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Morning Ron
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
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Stats..
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
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