I was diagnosed as stage I to the soft palet. I was told I would only need radiation. At the time I felt I had doged a bullet by not having to go through chemo. Skip forward two years and I present with a tumor in a lymph node in the neck. I am pretty sure a single errant cell had gotten away and lodged here as nodes ore not primary tumor sites. I also feel I may have avoided all the reccurance nightmares if I had insisted on chemo from the start.

Of course I am jaded and my advise should be taken with a grain of salt.

[quote]Realistically speaking... does anyone out there want to face this again? Taking a minimalists approach to treatment has backfired on far too many people to blow it off. Sometimes it's not even the patient's fault. A dr. makes that decision for them. For example with Chemo no being offered in conjunction with rads.[/quote]
Decisions are not totally left into the hands of your doctors. You have a say, at a minimum you can influence the decision.

Because, once I found out I have cancer, I have been most active in seeking information, diagnostic protocols, treatment options, and inventorying the numerous side effects, all variables of YOUR formula for YOUR plan.

Both the MO and Surgeon were fully on-board with treating aggressively in my case. However, due to Mx based on undetermined spots on my lungs, the tumor board had to concur to go at it all guns blazing. I started making calls about how to attend the tumor board meeting. Mind you I did not even know such a thing existed and then later find out rarely do patients attend. After being told by one tumor board registrar patients are not allowed, I went another route and got a "sure you can attend" answer.

Although attending the meeting felt a bit overwhelming, knowing 16+ doctors are making decisions that affect your life, I and my wife sat in and listened to the discussion, much of which flew over our heads.

However I could clearly see their heartfelt concern as me as a person not some name on a page and several times, prompted by a comment, they looked my way. The fact that I am very healthy and young gave them much more confidence that I can endure the extra treatments and it was reasonable to concur with the recommended treatment plan presented by my MO.

I have no facts to state that my presence at the tumor board helped lobby the more aggressive plan but I have to believe based on what I say and heard it certainly did not hurt. And the kind smiles as I departed will never leave my mind.

Don

[quote=Kelly211]I was diagnosed as stage I to the soft palet. I was told I would only need radiation. At the time I felt I had doged a bullet by not having to go through chemo. Skip forward two years and I present with a tumor in a lymph node in the neck. I am pretty sure a single errant cell had gotten away and lodged here as nodes ore not primary tumor sites. I also feel I may have avoided all the reccurance nightmares if I had insisted on chemo from the start.

Of course I am jaded and my advise should be taken with a grain of salt. [/quote]
So sorry to hear about the recurrence Kelly.

But that is exactly one of the reasons my MO pushed not only for concurrent chemo during radiation but also including a full series of induction chemo up front. Based on my case, he feels that there can be loose cancers running around undetected much less the spots on the lungs so he wants to do as much as he can to kill any of the buggers hiding out now.

Wish you well
Don

I have no problem with people deciding they want to have the most aggressive TX possible. I do have a problem, which I expressed quite clearly and forcibly, with stating that there is new patients have "only one shot at curing " oral cancer. I can not stop people from conflating the two. Conflation is one of the most prominent logical fallacies and this board is no exception.
I like Cheryl, I like Paul, I like DonFoo. They are all fine people. But there is enough pressure on newbies without stating that unless they get the cancer the very first time, then they have no other shot at curing it. Unless of course you subscribe to the Humpty Dumpty school of thought:
[quote]When I use a word," Humpty Dumpty said, in a rather scornful tone, "it means just what I choose it to mean - neither more nor less."The question is," said Alice, "whether you can make words mean so many different things."
[/quote]
In my not so humble opinion, sometimes people do too much. They has been lots of speculation already that HPV patients may need LESS radiation or LESS chemo to achieve the same results. .
It's fine to disagree on tactics. But its scary enough for newbies to usually get greeted by people with recurrences, let alone to start implying that there is only one shot at curing it and if you do not get it right the first time, then you have no other shot. Under that theory, I would have been dead 4 years ago. You need only look at the changes in treating breast cancer and cardiac problems to see how super aggressive TX may not be necessary or advisable.
while I understand why proponents of do whatever and as much as you can would want to state that there is only one shot, I will continue to object when that happens. As long time readers know, IMO it's more important to play FAIR and TRUTHFULLY then NICE.
Charm

AND....with all that said Welcome Doolittle!!! I head up North to BC a lot and I know you'll get great care. You too can beat this thing! - K

Hey,

I like Charm too. :-) And do VERY MUCH appreciate having a more balanced and more faceted opinions and experiences offered here. Having exposure to more options can only be helpful, if nothing more, educational. Ultimately, it is the patient and those trusted to make the critical analysis and decisions.

Of course, if you of all ppl,as well as PaulB, Christine and others who experienced recurrence had been offered more aggressive options and felt strongly of improved CR, and knew all the issues associated with recurrence would have at least given it serious consideration, if not, proceed that way.

As to any peer review published findings on HPV+ OC response vs non-HPV+ strains, there are none yet. There must be some trials but at this point any results would be classified as anecdotal. So the question becomes how much is one willing to gamble their live with something that is not stamped standard of care.

When I asked my surgeon about trials, his quip was they primarily are done to seek the balance of best outcomes with the least side effects. I like you, have a strong hunch that down the road definitive studies will find that HPV+ strains of OC can be treated with less but equally or even better outcomes.

However, until this is proven, I guess I am playing it safe and have rationalized the potential of increased short and long tern side effects more than offset all the issues related to recurrences.

That said, each person needs to make as informed decision for themselves and the more lively yet respectful opinions get posted the better.

Don

Donfoo

Hey, No argument from me on what you posted. Better safe than sorry is a valid approach that does not need made up justifications. I've said my piece on the "one shot to be cured" canard. Do I wish it had been "only one shot to avoid a recurrence" Obviously. Who cares? Again, obviously me..
I loved your direct question to those of us with a recurrence. Good style. My reply
Long Answer" Knowing what I know now, I would have still not done induction therapy, nor anything aggressive but instead done the gold standard. IMRT and platinum chemo. Instead I choose what was considered the miracle drug: Erbitux which did nothing for me.
(some indications it does not play well with HPV+, including my RO refusing to prescribe it anymore for BOT patients based on recurrences in myself and other patients. No conclusive studies nor peer reviewed ones so just my opinion at this point)
Short answer: I would have played it even safer, using only what fully vetted clinical trials showed worked - the proven Gold standard of IMRT & platinum chemo.
Caveat: While I was in great shape, I was 60 when diagnosed.
Not as strong as when I was 50, let alone magnificent at 40.
If I had been as young as many of the new OCF posters, my choices may well have been different.
Charm

Charm,

You are blowing this phrase out of proportion, even after I was kind enough to explain the often quoted phrase in a subsequent post, and you keep quoting me out of context also. What I said as a sign off to a paragraph answering the poster's question about chemo was, "You basically have one shot at curing this, and should give it your best." BASICALLY, meaning for the most part, in essence, fundamentally, and did not say, as you menton, "Unless they get the cancer the very first time, then they have no other shot at curing this" and "Only one shot at curing this" amongst others. Do I believe, and I know first hand with 5 different treatments, that recurrences may be treatable, but there are other factors involved, and sometimes they may not be able, can be more difficult to treat the 2nd time, and patients may have lesser options, loss of QOL, etc., but this was not the answer to the question, just a salutation to the poster, but an important one, and I should not have to write a book to explain every single word, which would need to be written by a doctor, which I'm not, and that does not seem to satisfy you.

From your responses, you are implying that recurrences are always curable, and are underplaying the importance of the initial treatment to "newbies" with you being the prime example, which is a falsehood, and scary for one to believe.

Don't get me started with your PET scan scary stories, aka PSSS lol.

Don,

I was offered, and accepted the same aggressive and structure sparing treatment you are getting, but in 2009, in lieu of major surgery, which was 3 cycles of TPF Induction Chemo, followed by 7 weeks chemoradiation, which was probably when one of the clinical trials was being done or soon after for Oropharyngeal cancer. There is more research being done now with recurrences even in spite of the best care, which may be that certain cells are programmed to metastasize regionally, and some distant, in some patients, and theory about H&N cancer stem cells, or cancer like stem cells that are resistant to CRT, plus others. I hope they come up with something or the right combination soon, but will mostly likely take time.

Paul

Like in Casablanca, I'm sure that regular OCF readers are shocked, shocked, shocked that any of my posts are deemed an over reaction. I can't help but admire your clever PSSS acronym. This reply of yours makes clear and explicit the context and implications of your "salutation", which does satisfy me (unlike the equally clever "?").
Your new cyber look is interesting: I've worried about scaring new comers with the laundry list of TX and recurrences, but I had not considered just deleting my signature line entirely as you have done (unless this is temporary while a revised one is under construction. Plus as a Beatles fan, I like your "nowhere man" edit on your profile. Seems I'm not the only contrarian on OCF (as the importance of a signature line is often touted here)
Seriously, thank you for taking the time to spell it out for me in your post plus having the patience to deal reasonably with my own rhetorical excesses.
Charm
.