Question About Treatment

Chen1911 said:

MrsBd, my reading of your

MrsBd, my reading of your prognosis is a 70% + 3 year survival rate.  Intermediate risk group.  

Right off the website.  I hope for yours being a 100% survival rate.  

http://www.cancer.gov/cancertopics/pdq/treatment/oropharyngeal/HealthProfessional/page1

The prognosis of oropharyngeal carcinoma is based on HPV status, smoking history (pack-year smoking history of 10 or more years), tumor stage, and nodal stage. The following criteria are used to determine whether patients have low-, intermediate-, or high-risk oropharyngeal carcinoma and have been defined using recursive partitioning analysis in a retrospective analysis of a randomized trial of stage III and IV oropharyngeal SCC patients treated with chemoradiation:

• Low-risk patients include those with HPV-positive tumors, a smoking history of 10 or fewer pack years, and N0 to N2a nodal disease.
• Intermediate-risk patients include those with HPV-positive tumors, a smoking history of more than 10 pack years, and N2b–N3 disease; or, for those with HPV-negative tumors, a smoking history of 10 or fewer pack years, N2b or N3 disease, or T2–3 tumors.
• High-risk patients include those with HPV-negative tumors and a smoking history of more than 10 pack years; or, for those with HPV-negative tumors, a smoking history of 10 or fewer pack years, and T4 disease.

The 3-year rates of overall survival (OS) were 93.0% (95% confidence interval [CI], 88.3–97.7) in the low-risk group, 70.8% (95% CI, 60.7–80.8) in the intermediate-risk group, and 46.2% (95% CI, 34.7–57.7) in the high-risk group.[12]

Citing:

http://www.nejm.org/doi/full/10.1056/NEJMoa0912217#t=article

WOW Stage 4 Cancer with a 93.0% 3 year survival (assuming no smoking history).  All you HPV+ are in the money.  All of us ex-smokers HPV- Stage 4 patients should get together and have a spend the retirement funds party (just kidding-gallows humor).

Of the six plus years that I have been on this forum, those that have passed away either HPV or non-HPV are probably pretty consistant. Having HPV derived cancer isn't a guarantee of survival... 

Though thankfully, those have been very few considering the number of people that frequent this particular forum.

There may be in the future, a less invasive treatment, as of now and the last several years, there is not.

i am a cancer suviour of stage 4 tonisil cancer that went to the lymp nodes of neck i had cemo /rads at same time treatment was hard and alot in a short time but what other choose did i have (my thoughts ) i also learned quit looking at stuff on compture or tring to research because its all just confussing i am as now a CANCER FREE the drs not sure but prayers work and support of plp help have trust in your drs and keep trying dont give up without a fight ------- p.s i cant spell (hope this helps ) .......... paul

Chen1911 said:

Disagree

Being aware of the prognosis should not imply in anyway a negative mindset.  Should I be "oh my I dont want to know anything that will interfere with my delusion of I will be cured."  I have no control over this disease other than my choices.  Tell "think positive" to a small cell lung cancer stage 4 patient when facing single digit odds.   I prefer to know what the stats show-I like science.  It is just a number.  All are flawed.  I think a very positive thought of my situation is this cancer will more than likely kill me, but maybe not.  If I was HPV+ and never smoked it would be that this cancer will more than likely not kill me, but maybe it will.

I am very very suprised at the lack of response to the latest stats which are within the last two years as a result of K. Kian Ang of the MD Anderson Cancer Center that HPV cancer increased by 225% from 1988 to 2004, and HPV negative cancer declined by 50%.  HPV cancer has a 58% reduction in risk of death (after adjusting.......).  I am blown away by it all.  

I'm reading this laughing.  Chen you have shaken things up on this discussion board.

 I appreciate your brutal honesty.  You must see that often on this site things are sugar coated.  I understand, as when I read that people are losing their teeth six years after treatment, its alarming. (Whoever wrote that, i'm really sorry thats happening to you.  Its sucks on every level.)  I guess that makes me think perhaps living in that positive bubble will at least make the five years preceeding my teeth falling out, happier ones. I have a tendency to want to believe the best case scenerios and I certainly maintain a positive attitude most of the time.  I don't always agree with Skiffin, but i'm in his corner on this point.  

Maybe having a positive attitude won't help or hender cancer growth but it certainly makes for a better life by my definition.

I enjoyed each of your responses to Chen.  We all deal with this diagnosis differently.   Whether HPV positive or not its an earth shattering diagnosis and it causes a great deal of soul searching or in Chen's case, fact gathering.

I see that you are most logical and that you come at life from your brain more than your heart.  I find your candor refreshing.  Grab your reaction by the throat and shake it baby.  We can't always control what happens to us but we can sure choose our reaction to it.

I wish you luck in finding trials and peace with whatever the future holds for you.

Shirley

Sorry I thought I did answer you but I was not specific enought and I am sorry for that. Your question was:  Has anyone whose prognosis is in the "high risk of death" catagory hpv- stage 4 10 plus pack years been offerred a trial as recommended in The New England Journal of Medicine article?"..... My answer is NO, I was not offered any trials. I was a very high risk just for the surgery to survive it. I was T4 N2 M0 That is stage 4 and NO HPV and I smoked more then ten packs.

No I did like this and thank you for it; "WMC who I believe from reading his posts it would take a thermal nuclear device to finish him." That is very kind and almost true, I will die of COPD unless I get lung cancer first like my Father did. 

Now I too have read the Cancer.gov many times when I was told I had cancer and they saw the tumor but would not byopsy it because they could not stop it bleeding and I was in a hospital surgery room. You have been told by your doctor whom you do trust [which is good] and have a 42.6% for three years.  Did you also read they [cancer.gov] recomend going to a team of doctors, called a tumor board?

You have fath in your doctor and you should. She is recomending chemo and radiation, which is pritty much standard. Is she an oncologist? With chemo and radiation, as you know there can be side effects and you might have a rough time with it. Please know you will get support if you want from this site. Or just a ear to listen if that is what you need as well. I do wish you the best and hope the % is in your favor.

WMC

KTeacher said:

Thought

I have been giving a lot of thought on how to answer your question.  I started my first battle with cancer in 2010.  I had a lump on my upper lip inside my mouth, no sign of cancer.  A week after biopsy I was quickly sent to Stanford.  Squamous cell carcinoma, perineural invasion, spindel cell varient.  Shock and Dr. Google search.  (I didn't find this site until after treatment).  Surgery, one inch of my upper lip was removed, 50 stitches.  Followed by radiation.  I was Stage 1 or 2, HPV-, non drinker, non-smoker.  I did finally meed NED but have come to realize that cancer doesn't care, it doesn't follow the rules.  2011 I noticed a lump on my neck, couldn't be, shouldn't be, doctors were shocked after biopsy showed Mets.  It had gone across my upper lip to the opposite side of my neck, it's not supposed to do that.  Neck dissection followed by radiation.  By now I had found CSN and thankful for the help, support and friendship.  Did meet NED again.  I am not going through this to discourage anyone.  I am grateful for each day and if I have to drink Ensure, so be it.  So far I have not needed a Peg (although last month it was starting to be talked about).  2012 I started having double vision.  3 times, no way--way.  My eye had to be removed followed by chemo and radiation.  Doctor;s knew that they were not able to remove all of the cancer and let me know.  Longer recovery and retirement.  6 months later, headaches.  Tumor on base of skull.  Cyberknife.  Tumor dying, things finally looking good.  Doctor's had always talked cure.  Last October biopsy in sinus, something didn't look right to the doctor.  More cancer.  Scattered throughout maxillary sinus and 3 lumph nodes.  No surgery or radiation.  I am palliative chemo.  I was given 2 months to 2 years.  I am fighting for each day.  I am not looking at statistics as I don't have an expiration date on the bottom of my foot.  I am not planning on jumping off of the roof or taking extra pills.  I don't have my head in the sand and I am not wearing rose colored glasses.  I want to enjoy each day that the Lord blesses me with.  I want to be able to travel to see my children and grandchildren.  Attitude may not help but it sure doesn't hurt.  Being a Negative Nelly would make me miserable and my family miserable.  You can find out about the numbers but we will be here to help with the burns and mouth sores.  The dry mouth and problems eating.  What pain meds worked for us.  Swallow every day, drink water (even when you don't want to).

Bless you and your positive attitude KTeacher.

I admire you.

Chen1911 said:

Disagree

Being aware of the prognosis should not imply in anyway a negative mindset.  Should I be "oh my I dont want to know anything that will interfere with my delusion of I will be cured."  I have no control over this disease other than my choices.  Tell "think positive" to a small cell lung cancer stage 4 patient when facing single digit odds.   I prefer to know what the stats show-I like science.  It is just a number.  All are flawed.  I think a very positive thought of my situation is this cancer will more than likely kill me, but maybe not.  If I was HPV+ and never smoked it would be that this cancer will more than likely not kill me, but maybe it will.

I am very very suprised at the lack of response to the latest stats which are within the last two years as a result of K. Kian Ang of the MD Anderson Cancer Center that HPV cancer increased by 225% from 1988 to 2004, and HPV negative cancer declined by 50%.  HPV cancer has a 58% reduction in risk of death (after adjusting.......).  I am blown away by it all.  

Chen, i agree with you, I'd much rather have the plain truth and no sugar coating.  i like to know what to expect.  i know the doctors aren't always right when they give a length of time to someone but i'd rather them tell me what they see/feel as far as science goes.  i can do what i want with the information.  but I would not dwell on the negative, but instead do all i can to enjoy whatever time i have.  so, i recommend you do your best to do what you need to to fight the beast and don't concentrate on not making it.   but, i like you putting it out there.  it wakes us up....lol

God bless you,

dj

Chen1911 said:

Debunk

I posted on here when I was very frustrated.  Everyone is HPV+, and the few who are not had the standardized treatment.  I spoke this morning with someone very knowledgable about the research side of things and I was schooled.  

The article that recommends trials for those like me was simply a comment on the dismal stats associated with this type of cancer when discovered at stage 4 HPV- and an extensive smoking history.  A comment that we the prognosis is "extremely poor" and we should be looking for something new (as I was told).

I was also told that postive thoughts and attitude are good but have no effect on cancer tumors-they researched it.  Topic came up with the issue of depression and being told true prognosis.  I don't mean to downplay having a positive attitude as it affects everything especially continuing treatement exercise non drinking and smoking and eating healthy.  Just that clinical depression (a really really poor atittude) does not effect the tumor growth.  

I was told that many doctors are very conservative  and instead of jumping up and down yelling happily we they find out you are HPV+ (if you were not a smoker) they give their patients a very conservative diagnosis.  When it is really out of this world cancer-wise positive. Cure cure cure.  

Likewise on the other side of things.  

Debunk the responses.  No.  The responses were to pooh pooh the question.  Dont read statistics.  Dont google.  I received responses that did not even touch on the question.  I do have my answer now. Reading this forum it appears that HPV-cancer is now almost rare except for WMC who I believe from reading his posts it would take a thermal nuclear device to finish him. 

Finally, an interesting thing.  World renown head and neck cancer researcher (first name on the article) K. Kian Ang from the MD Anderson Cancer Center died of cancer-he was the first name on the article that says to use trials.  

http://www.mdanderson.org/newsroom/news-releases/2010/hpv-positive-tumor-status-indicates-better-survival-in-patients-with-oropharyngeal-cancer.html

http://www.houstonchronicle.com/news/houston-texas/houston/article/Prominent-M-D-Anderson-cancer-doctor-dies-at-63-4615587.php

 

Chen, i was originally dx 8/2009.  cancer of the larynx.  i had 35 rad tx.  i quit smoking for 8 months and started again.  i smoked 2 packs a day, EVERYDAY, for 43 years.  in feb, 2012, the cancer came back.  HPV - both times.  2/28/12 i had a total laryngectomy and I have been cancer free since.  when it came back it was stage 3.  i don't know the answer to your question but wanted you to know, i was stage 3, not HPV, had recurrence and still alive and doing well after 3 yrs.  you know, you could just be a statistic yourself and come out of this and live another 25 yrs.  its okay to look at the stats, but see all possibilites!

good luck,

dj