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#181925 05-23-2014 03:37 AM
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Mandy Offline OP
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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
Mandy #181926 05-23-2014 05:31 AM
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First off CONGRATS for completing the radiation. I know how tough that is smile. 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.
Mandy #181931 05-23-2014 05:06 PM
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Mandy Offline OP
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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
Mandy #181934 05-24-2014 06:29 AM
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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.
Mandy #181936 05-24-2014 08:27 AM
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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
Mandy #182815 06-25-2014 03:17 AM
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Mandy Offline OP
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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
Mandy #182817 06-25-2014 06:06 AM
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"OCF Canuck"
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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
Mandy #182821 06-25-2014 07:33 AM
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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.
Mandy #182829 06-25-2014 05:08 PM
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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

Mandy #182831 06-25-2014 07:29 PM
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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.
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