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calling all amateur Oncologists (or even real ones if any are hanging around)

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Ok, just to recap I'm SCC BOT Stage 1 w/n2c. Just finished Induction round 2 and all pain, swelling and visual (throat scope) of tumor negative.

So, the gold standard treatment is (if no surgery) Induction Chemo followed by 35 RADs w/wo more chemo. So, here's my question, surely there have been other protocols tested. Where in the world would you go to find them. For instance, what was the result if they did 20 rads? 10% recurrence 20%, 5% ? Surely it's been tried. Has there ever been a chemo only study?

My point is, it's easy to accept the "scorched earth" (or scorched throat in this case) treatment since it has great results. But surely there are choices.

Thanks,

Joe

katenorwood
Posts: 1800
Joined: May 2012

Joe,
Man this is the question of all questions. And there are tons of people on here that will tell you to finish any and all treatments. Have you discussed this with your team ? We all at one time or another will face this. I am learning from the folks on this site that nothing and I mean nothing should not be tried to beat this dx. I wish you luck with your search into yourself....and I will be thinking of you ! Katie

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

less than the gold standard has been tried...and most likely did not have the best outcomes. My Onc told me, that the best HNC Dr.'s in the country meet once a year and discuss treatments....and that what I was getting was deemed the best treatment for NPC by that committee. I had 3 Cisplatin treatments, 3 weeks apart while I was getting my 35 radiations...then 3 Cisplatin/5FU treatments 3 1/2 weeks apart...There was a few times in the last 3 months that I would gladly have skipped a treatment (even talked about it), but when it came to the nitty gritty...I never wanted to face this crap again....so hit it with everything they had to offer. I think I sleep easier these days because of it.

p

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Hi Joe,

If you want to read the original medical literature you can use Google Scholar. Just type in something like "scc base of tongue imrt" and you'll find thousands of abstracts. In some cases you can read a whole paper for free. As you suspected, a lot of different protocols have been tried, changing the total dose of radiation, how many times a day a patient gets irradiated, drug combinations, induction chemo yes/no, ... with different outcomes on different groups of patients.

Fun weeks of reading ahead. :)

Dre.

hwt's picture
hwt
Posts: 1816
Joined: Jun 2012

Why would you not want to try every option available? When you look at percentages ex. 80/20 you should be asking yourself "what do I need to do to be certain I am in that 80%". Since most studies are based on 5 years, the data is likely outdated by the time it is published.

Candi

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I am a statistics guy. It's my background and my current job. I know many on here say "statistics don't matter" and I agree, I really do agree that each person is different...I just like to read the stats on different plans, treatments, etc. I can't do a budget for my ownership / management company without data. I must have data!! :) Then of course there are all the variables like

I'm sorry my post is no help.....good blessings if you find what you are looking for...I've tried and I feel like I get on Natinoal Forest Roads (you might have to live in the wild west to get this one) that go everywhere and nowhere at the same time :)

Best,

Tim

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Whoa folks, I'm not suggesting that I'm not in favor of going down the path, my point was that somewhere there's this mythical chart. On it lists cancer "a" and it says if you do this there is a 90% 5 year cure rate, if you do this other thing, it's 84% 5 year cure but tends to come back in year 7.

You just know that the data exists somewhere.

When I was down at MD Anderson, 10 minutes after my first exam I was told what the treatment would be. When I asked (chairman H&N Dept) was there any other choices his answer was "this has been our treatment of choice for your cancer for the last 5 years. You can skip the Induction but if you do, we won't treat you here".

I just thought to my self "there must be choices?"

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

actually, I was given a choice: rads & cisplatin, or rads & erbitux. I signed up for the study that let me get rads & erbitux.
but the rads were not an option.

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Ok, so here's another. Why, if I would have had the tumor removed surgically, would there have been only 20 RADs. The Induction, even after only two treatments have reduced anything I had to mush. I have no pain and no swelling.

I'm going to keep posting this disclaimer so you guys don't beat me up:

"I"m not saying I'm not committed to my full 35 RAD program, I'm just trying to understand".

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

there was a recent thread that was something like, "can chemo cure cancer by itself?"
not sure if that's what you're asking...but if you are, one of the answers was that chemo alone is a palliative. for the cure, still need rads.

btw, I'd be taking these questions to the pros--it's the reason they get paid the big bucks.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

"You can skip the induction but if you do, we won't treat you here"? Wow. I was "interviewing" two different centers at the beginning of my cancer center. The decision to do induction chemo was mine. I think that most people on this site do NOT have induction chemo. Chime in to correct me, gang, if I'm off. I think that most have a carbo or cisplatin or Erbitux with rads, and that a smaller number have induction chemo and an even smaller number have "big chemo" after chemo-rads.

Early in my treatment, I saw a study online that was something like what you're looking for. I was dismayed to learn that the most aggressive treatment plan available to me was NOT the most successful one in the study (the "winner" included surgery up front). A word of warning on the studies - you've already been warned that most studies available are outdated. You also need to bear in mind that many may be slanted as well. The first study I found showed just a 35% chance of survival for five years for people with my cancer, and less for more than five years - enter depression. BUT I know that some folks here have been given better numbers by their docs - surely the docs have more current, more non-biased info.

For what it's worth - if I had to re-do my treatment, I would most definately still do the induction chemo. I understand that many feel it's overkill, and makes the patient suffer much more, and some don't feel it has proven to make enough of a difference for it to be worth it - but I'm glad I had it.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Stanford has some studies going on right now, testing whether a reduced amount of radiation/chemo will be as effective as the dosages currently prescribed. One of the tests they were doing two years ago, when I began treatment, was a comparison of treatments with and without induction chemo. They advised me that, in advance of the long-term survival rate data, they had no proof that induction chemo would do anything more than just make me sicker. They were seeking the evidence that induction chemo, combined with concurrent chemo/rads, resulted in a better survival rate. Their advice to me back then was to skip the induction chemo, and go straight to concurrent chemo/rads.

One way to look at this is that, up until now, doctors have been striving for better and better treatments, and for the most part, a better treatment involves more chemo and more rads. It is only now, when they see that the chemo and rads can effect a complete cure, that they are free to start looking for a similar cure, with less meds.

Deb

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi Joe,

So you want the chart? It will cost you 50 bucks (cash). I lifted one from my ENT’s office when he was busy scoping my throat.

I typed “cancer treatment survival chart” into Bing images and got all kinds of cancer charts. Probably need to refine the search.

Sorry to tell you, but you are wrong. I got the “Gold Standard” and it included surgery followed by rads and chemo. I was given the choice of surgery, with and without rads and chemo or rads and chemo with or without surgery. My ENT had a real sharp pocket knife, but said he could not guarantee that residual cells might be left behind, so I thought what the heck, rock, paper, succors or flip a coin. I chose the shotgun approach, and I hope we killed everything.

Statistically, 82% of H&N warriors expect this from me and 18% wonder about me. I am always hoping, everyday that 100% are treated to the best ability that science has to offer.

Good luck with the chart expedition and best of luck with your treatments.

Best,

Matt

katenorwood
Posts: 1800
Joined: May 2012

Joe,
My dx is one of those that aren't being studied and charted....by many BIG clinics and hospitals. Just not enough of us to fit into their budget. Honest to God I have been told this. So when I did find a good reliable site to get stats and treatment options....kinda hit me like a brick. I know what you're looking for as I was too. I have no answers for you on this one. But if you do find a RELIABLE...TRUSTED...UPDATED...source, you will get these answers. Continue to ask, but saying this be ready to hear things that in the great scheme of treatments mean a hill of beans. These people are a great group, and by no means mean to gang up on another survivor ! It's that they want you to stay upbeat and to beat back the beast...no matter what it takes. And Joe, if you do find the info., and it is positive and helpful for H/N folks share it....as I have with people dealing with adenoid cystic carcinoma. Wishing you the best, and please keep us updated ! Katie

ratface's picture
ratface
Posts: 1229
Joined: Aug 2009

The National Cancer Comprehensive Guidelines have the historical "If this, then that" charts complete with arrows and boxes. You can spend an eternity on their website. If your case has been studied by a tumor board at a major hospital that specializes in Head and Neck treatment you really just need to get on with the next step and jump in the water. I totally understand the inquisitive nature of our species as that is how I discovered the charts but we don't question pilots as why they can't take off at 10 mph less speed or why they can't land on shorter runways. There comes a time when you just , Trust your oncologist? Are you perhaps not comfortable with your pilot?

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

First, I don't believe there is a "Gold Standard"....

The protocol your facility is using is based on many things more than likely. Some of those include National/International Studies, but also regional as well as what has worked best for that facility.

The standard 35 rads is pretty much what you could call a "Gold Standard", as throughout my almost four years on here, 35 rads has been pretty much 95% of what everyone received.

As for less if you have had surgery, I haven't heard of that before. Myself and many others have had surgery as for affected tonsils being removed, and still had 35 rads.

The protocol you referenced is one that I did go through (or close), but I don't consider that the Gold Standard. Again, myself and several others had nine weeks (three week cycles) of multi-chemo induction and then rads or concurrent weekly chemo/rads, but with some surgery upfront...many also have dissections upfront or after Tx.

For myself that was nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU, then an additional seven weeks of concurrent weekly Carboplatin and the 35 daily rads, oh and with 35 daily injections of Amifostine in the tummy.

But there have been many with totally different combinations of chemo, rads, amifostine, concurrent, induction, surgery....

The only given, is that you'll more than likely receive either one or all of a combination of surgery, chemo and or rads.

I can't really say that there has shown any Gold Standard on here...

Out of the 100% of us, there is probably 10 -15 if not more variations of Tx protocols.

As for having less treatment than others hoping for a better long term quality of life outcome. I don't think there is enough history at this time to warrant it (like mentioned above).

Like many, I'm not a professional, I leave that to the MD's that I totally trust. If one doesn't trust their MD's to make the best choices...well maybe they should seek other MD's and opinions until they find comfort in them.

Again, these are only my thoughts, not directed toward you or anyone else's decisions...

BTW, statistics are bias, depending on the desired results. Everyone is different and I don't necessarily feel that many on here fall into the major categories listed on the internet.

Best,
John

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

6 OUT OF 7 DWARF'S ARE NOT HAPPY.

I was offered Robotic surgery , neck disection followed by chemo
and rads,
....OR....
Radiation only 33 (no chemo)

Well I opted for the rads only and I'm doing great almost seven
months out of treatment and back to doing everything I did before
the dredded C got me, taste and salive still off but I eat pretty much anything.
My PET and CT scans have been clear and I have faith that they will continue to be.
I don't take any meds, only a natural product for my immune system
and quite frankly I feel better thanI have in years ( 62lbs lighter )

Stage II tonsil HPV+

God bless
Tonsil dad,

Dan.

luvofmylif
Posts: 344
Joined: Sep 2012

From what I have learned about this if you have surgery first then what they radiat may change but not the dose. For instance my husband had BOT surgery and then bilateral lymph node dissections. Nodes were positive on the right but negative on the left. Therefore, he is having radiation to the right side of neck only.

Just from reading different medical articles on the subject you will find that they know the exact dose of radiation that it takes to kill cancer cells, because this has all been done scientifically in labs. They don't just guess what dose, they know what dose does the trick. It is tried and true. So, to go to radiation and not get the proper dose as in number of treatments is a waste of time. The cancer cells can survive and that's not what anyone wants.

I hate radiation believe me. We are about half way through treatment and can't wait till the end. Hope it's not too bad for you and that you keep going

But, also, ask your radiation oncologist ...I find that ours is always most willing to enlighten and explain to us. Information is good.

Joan

Joesph
Posts: 7
Joined: Nov 2012

While I am doing chemo and radiation together, but I'm doing chemo once a week in a milder dosage rather than the higher dosage once every 3 weeks. Supposedly this will reduce the number of the side effects that come from standard chemo infusion. I start on Monday the 12th and will keep you informed as to my progress.

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Joe,

As I said, there are charts out there. I just refined my search to “head and neck cancer survival rate” in Bing images and up pops a chart as said. Read it and truly weep.

If reading these posts have taught me anything, it is how different we are from one another in diagnosis and treatments. To really be nit picking accurate you better include (not only) the type of chemo and radiation intensity and duration, but also the make and model of the machine and the success rate of the technicians and nurses. After all we are looking for not only the best treatment course, but those with the longest survival rate.

In the end, what is wrong with the statistics available? If you want another source for statistical data, then visit the life insurance actuarial tables.

Very best of luck.

Matt

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