| Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | hi just an update on my situation,have just finished 6 weeks of radiation on my neck because of spread to lymphnodes,4 out of 27 had cancer present,1 node had more than the other 3,they only had 1 cell in each,my original surgery for buccal mucosa was nov 2013 it turned up in nodes only 8 weeks later,had a selective neck dissection,cant have my first scan until end of june,i am so frightened that it has spread to other parts of my body,i had all clear margins from first surgery and ct and mri showed noe node involvement ,for it to reappear only 8 weeks later is scarey,forgot to say it was stage 2 until it spread to nodes,now I think it is stage 4
Last edited by Mandy; 05-23-2014 03:38 AM.
nov 2013 ssc of buccal mucosa stage 2 jan 2014 neck dissection because of cancer in lymphnodes feb 2014 6 weeks of radiation march 2015 tumour buccal mucossa stage 4 june 2015 lower jaw removed nov 2015tumour in left node on neck jan 2016 radiation and chemo to commence Nov 2015 left deck dissesction,1 posative node
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | First off CONGRATS for completing the radiation. I know how tough that is . Next, calm down, waaay down as it really does not do you any good to worry about things you can't control. The job of the nodal system is to do exactly what they did, filter out the cancer cells and stop them from spreading and in most cases that's what's happened. Your cancer had probably already spread to the nodes before the surgery and was just not detected or undetectible initially. The radiation is designed to kill this cancer and in most cases it does so calm down and I'm sure they will scan you in a few months to make sure it's all gone.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | thankyou for your kind words,all this is just so scarey and sudden
nov 2013 ssc of buccal mucosa stage 2 jan 2014 neck dissection because of cancer in lymphnodes feb 2014 6 weeks of radiation march 2015 tumour buccal mucossa stage 4 june 2015 lower jaw removed nov 2015tumour in left node on neck jan 2016 radiation and chemo to commence Nov 2015 left deck dissesction,1 posative node
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Yeah I know but leave that to us, you just think positive thoughts.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there the numbers are scary - but remember you are not alone and a lot of us are a few years out and doing ok. Chances are that the cancer was in the nodes before your original surgery. Often this cancer seeds to the nodes but sits dormant until the primary is removed then they become active, so your story is more common than unusual. Most ENTs remove a selective grouping of nodes when they are removing the primary tumor - this is preventative with this type of cancer. (Non HPV) but that is up to the discretion and experience of the ENT. Bottom line is you are done, you got through radiation and chemo, and now you are healing - try to focus on that. Your scan will come soon enough and I know when faced with this we all want assurances and definitives but sadly this is one of the mental games the C word plays with you. It really just reinforces the reality all of us live by - there are no guarantees in life. Tr to put the fear aside - acknowledge it then ask yourself have I done all I can do at this point to fight this? (You did treatment - you followed your drs advice) if the answer is yes then focus on healing and living your life. Everyday people leave their home intending to return that evening and don't make it back - car accident? Shooting? All we have is now - so don't let the cancer steal your joy and live your life. Give it it's due attention - take your meds - see your drs. Go for scans but then do what you can to move on. Hugs...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | my first scan is tomorrow after finishing radiation 8 weeks ago,i have convinced myself that the cancer has spread because I have upper back ache,i am terrified and no amount of reassurance is helping,i am snapping at everyone,crying for silly reasons,i hate what this has done to me and my life
nov 2013 ssc of buccal mucosa stage 2 jan 2014 neck dissection because of cancer in lymphnodes feb 2014 6 weeks of radiation march 2015 tumour buccal mucossa stage 4 june 2015 lower jaw removed nov 2015tumour in left node on neck jan 2016 radiation and chemo to commence Nov 2015 left deck dissesction,1 posative node
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hugs - everyone gets stressed at scan time...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Hugs and prayers for you and your family. Let us know how you go Aussie girl, we'll be here. 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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Best wishes for your scan today Mandy. I know you are stressed and hope you do not need to wait too long for the result. Gabriele (Sydney)
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | Hang in there, Mandy. Waiting for scan results is the worst. I hope your doctors get back to you quickly and ease your worries.
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | scan finished,,,no evidence of disease,i need a PET scan in 3 months
nov 2013 ssc of buccal mucosa stage 2 jan 2014 neck dissection because of cancer in lymphnodes feb 2014 6 weeks of radiation march 2015 tumour buccal mucossa stage 4 june 2015 lower jaw removed nov 2015tumour in left node on neck jan 2016 radiation and chemo to commence Nov 2015 left deck dissesction,1 posative node
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Great news. Relax and live a bit now. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Great news on the NED result on your scan. Time to breathe and smell the roses a little. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Great news Mandy, good job! 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: 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 |
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 |
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | It took me 3 post Tx scans to finally get NED so congrats.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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