| Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Paul, Thanks for posting the calculator but I wanted to point out a couple things about its usefulness to today's typical OSCC patient/survivor. The calculator is based on older data [quote]The calculators are based on observed outcomes for cancer patients from 1987-2007[/quote] and does not ask for HPV status which we all now know is a factor that has significantly different outcomes. Also asks for Extracapsular Spread which is an uncommon indicator most don't report or know much about. I think I'd rather go to an online gambling site and determine my fate at the roulette game. LOL
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | It's not mine, and have nothing to do with it, and referring you to the disclaimer for use lol. I just added it to the conversation, which seems cool, and is not the first calculator I've seen for head and neck cancer. I think this is from Massacusets Genetal Hospital. I don't know what data it's based on, years, but it's the copyright that's from 2007-2011. I guess one has to follow the legal terms or disclaimer for its use. Like gambling, it's for mature audiences only. Do I rely, believe on weather reports also, no. I would take it with a grain of salt, but there must be some criteria to their analysis, beyond my knowledge, interest. http://lifemath.net/cancer/disclaimer.html
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2013 Posts: 21 Member | OP Member Joined: Nov 2013 Posts: 21 | [quote=donfoo]Paul, Thanks for posting the calculator but I wanted to point out a couple things about its usefulness to today's typical OSCC patient/survivor. The calculator is based on older data [quote]The calculators are based on observed outcomes for cancer patients from 1987-2007[/quote] and does not ask for HPV status which we all now know is a factor that has significantly different outcomes. Also asks for Extracapsular Spread which is an uncommon indicator most don't report or know much about. I think I'd rather go to an online gambling site and determine my fate at the roulette game. LOL [/quote] I had to reply. First, roulette odds suck. Try CRAPS. Second, I used the calculator for the first time. I am shocked at your replies. It is based on hard science. Evidence based science. Based on the results, I have given what was left of my meager possessions to charity, bought a coffin and I am currently lying in it typing on my laptop waiting for my demise. I bid you adieu!
Tonsil Stage 4 7 weeks chemo/rad 4 months peg NED Pet 9/13
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Bon Voyage, Ron. I'm glad to hear the statistics were useful for planning purposes. LOL
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Ron would really have needed his EFGR level and some of the other molecular markers to tune the prognosis. Even with that, prognosis is just a statistical guess - since many factors are not covered in whatever model you are looking at. There are some interesting abstracts on the ASTRO 2014 conference site that deal with prognosis - including an alternate staging methodology for HPV+ oropharyngeal cancer developed with a RPA (recursive partitioning analysis) model.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Ron... you get wi-fi in that thing?
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Ron, THere are two different issues in using statistics to determine treatment and using them to deal with patients. Every major cancer institution uses the NCCN guidelines to determine treatments for patients, Those guidelines are developed at the top 50 cancer centers on what is or is not working. This repy from you clearly shows that you think that individual doctors only use the SEER database to determine what they are going to do to treat a patient and you could not be more wrong.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Having just come back from lecturing in Maine on survival, HPV status, and statistics on outcomes, I had a chance (with this post on my mind) to talk to other doctors who I regard highly in this environment. I feel more strongly about this issue now than I did before. Individual doctors at major cancer centers are using national standards of care for treatment drawn from experiences at major institutions, ie the NCCN guidelines. There are those doing things slightly differently, but most of those are related to clinical trial treatments. Anyone who thinks that every individual doctor uses the SEER data base for treatment planning of any singular individual is missing how it is used and what it was designed for. It has noting to do with treatment planning. It is designed to track incidence, etiologies, and end results from those causes. You can not draw treatment conclusions from it. It is designed to look at disease trends in America. The results from any search in it since it is a compilation of data from 19 collection points in a country of 300 million are far from exact. They are best guesses given the way that we collect data. Parsing that out to a single individual's treatment even by the best doctors would still end up with a probably, or likely idea, not an absolute idea. That the calculator was based on at the time, good science, but it does not negate the factor that science changes constantly, and in our disease specifically that is highly meaningful. The advent of the HPV etiology, as just one example, is dividing the data it two different sets. Anything that does not consider that in its calculations is going to get wrong answers. Bias in data is rampant, and if not adjusted for, data coming out of good institutions is still meaningless. A calculator in our disease that does not adjust for HPV status is worthless. The last decade since that was created has seen changes in treatment modalities, and increasing knowledge of monoclonal antibodies which are highly useful in slowing down cellular replication speeds so radiation can be more efficient, better use of targeted radiation itself, a better understanding of pathways of metastasis, and mechanisms of it occurring, and more that I could list for another paragraph. All of which alter outcomes, and obviously statistics. Personally unlike some others here, I did not find this conversation productive nor stimulating. It is a divergence from helping people with information that is truly actionable or comforting. Ron has said he will not post here again. He has his mind made up about what all this is regardless of the replies and thoughtful time anyone else put into the conversation, and if no one else gets that at the end of reading five pages of posts, this particular mind is not to be turned from a particular idea, so be it. This forum exists to help people that are in trouble, that need emotional support. Physical and emotional support is what it is about. They have treatment related questions that we have all lived through and know now the work arounds that we can pass on to them. That is our reason for being here. Academic arguments by people of varying backgrounds, (few in medical statistics or the minutia of facts related to the treatment and outcomes currently being experienced in head and neck cancers, and specifically those of tobacco etiology, (which have unique nuances to them), as knowledgable as they may be, are incomplete and not useful or productive. We are not academics, and few have read the reams of published papers that do not make the more common discourse but do apply. Having a long running argument with someone who has their minds already made up about the answer (for which there is not an ,absolute as it relates to them that is knowable) is a waste of time. I think we have beat this idea to death and am going to close the thread. There are people who are afraid, who are suffering through uncertainty, pain, clinical issues that many of us have found our way through that need our help. Let's direct our energy with an equal enthusiasm to them that was put into this thread.
Last edited by Brian Hill; 09-20-2014 05:25 PM.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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