| Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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 All the details, join at http://beatdown.cognacom.com | | | | 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 | 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
| | | | Joined: Jun 2014 Posts: 17 Member | Member Joined: Jun 2014 Posts: 17 | 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 CathyG
| | | | Joined: Jun 2014 Posts: 17 Member | Member Joined: Jun 2014 Posts: 17 | 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 CathyG
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | 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.
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 |
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. | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | 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.
| | | | Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2014 Posts: 66 | 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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