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donfoo Offline OP
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Two years after being diagnosed, I'm a bit embarrassed to admit I did not have a full understanding of the word survivor. I found this link from MDA that made their definition clear. Thoughts?

http://www.mdanderson.org/patient-a...on/cancer-topics/survivorship/index.html


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
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Don, my thoughts agree with yours that you should be embarrassed. It is very clear to me.

I don't know if I buy into different stages, much like grief, as there are no clearly defined stages that we progress to. They may all happen, just not in any specific cancer and we don't get to stop one stage and go to another.


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
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So do both of you agree that survivorship starts at the very beginning?
I believe in the different areas of surviving and that they can happen over and over again if that is what your cancer does...
I survived the diagnosis
I survived the surgery
I survived the radiation
I'm surviving the healing and uncertainty
I AM A SURVIVOR


3/26/14 dx SCC R ventral tong;PNI Stag 1 age 49
PET Clear
4/18/14 re excis part gloss; Marg clear; R END all clean
6/12/14 start RAD IMRT x30
smile CathyG
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Why embarrassed?!
I'm in the medical field and know that I don't know the answer and I'm definitely not embarrassed to know I'm not the only one with the question.
Thank you!
Cathy 💜


3/26/14 dx SCC R ventral tong;PNI Stag 1 age 49
PET Clear
4/18/14 re excis part gloss; Marg clear; R END all clean
6/12/14 start RAD IMRT x30
smile CathyG
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I believe that the term 'cancer survivor' came into common usage as more positive alternative to 'cancer victim' about 20-30 years ago. Words have a lot of power, and survivor beats the heck out of victim as a descriptor. I believe our friend Cathy has the right approach.
Maria


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.
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donfoo Offline OP
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How I interpret the term now is the moment you get cancer, certainly before you know it and diagnosed, you are surviving the disease. From that moment on the battle begins, your body tries to fight it off but is losing the battle. As long as you are alive you are surviving the experience.

On the other end of the time spectrum, you can forever wear the badge that says survivor.


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
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This has been in effect for a few years that a cancer survivor is from the date of cancer diagnosis as opposed to other cancer survivor dates. I wonder if this also had an effect to show increases in survival rates, even if for several months. Anyway, I go by my first diagnosis date, and do not say survivor. I'm a cancer fighter from day one, and always will be. I didn't survive anything, I fought for everything.


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






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I agree with PaulB.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Posts: 286
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I don't understand the significance or benefit of categorising the stages. Survivors are breathing, non-survivors are not. We may still have cancer, detected or not. It may come back, we may get it somewhere else in the future. But I'll share one thing I've learned from my experience.

I do not wait for the next checkup, the next PET. I do not wait for a doctor to tell me its ok to live for another 3 months until I see him again. I don't know if I'll get sick again, but I will never look back from a hospital bed at days like these when I'm healthy and wish I had done something more. I make a conscious effort not to waste days and I'm grateful for being here. That attitude does wonders for shaking off Mondayitis, because there were so many Mondays I would have given anything to be well enough to see my friends at work.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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It's an interesting topic donfoo, how they've defined the stages. I feel like I am in a limbo stage now having just completed treatment but having no idea if it worked or not and won't know for several weeks. Does that make me a limbo survivor, doing the dance with a great back bend to get under the pole? I'm not that flexible but I will try anyway and likely fall down and get up again with your help, dust myself off and try again. Maybe I better practice some yoga this time? I'm joking around but I'm with all of the above it that I am both a survivor and a fighter.

No way should anyone be embarrassed about not understanding newly made up stages of survivorship. I've in a different stage with each of these cancers so it's confusing for me. I'm hoping for more research and more cures so that more of us can live good lives while grateful for everything that's been done that has helped us all.








HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
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