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#162702 03-12-2013 01:19 AM
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Stily1 Offline OP
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So, almost three years since the end of my treatment for SCC of the tonsil in Canada, I've just learned I have not so much a recurrence as a metastasis. Yep, same cancer (genotyped) has appeared on the inside edge of my left lung (lymph system, very close to my aorta) and I start chemo here in London tomorrow, all of 13 days since diagnosis. Cisplatin one night then 4 days of 5FU. Three 3-week cycles, then some radiation to polish it off, if all goes well. They'll keep me in the hospital for each 5-day drip.

I'm over the scared stage. This treatment is not expected to be as hard as last time. I have the best of care at a world-class cancer hospital (The Royal Marsden), gold-plated private medical insurance (on top of what the NHS offers), excellent support of family, friends and colleagues.

It's an instant Stage 4c due to the metastasis, is incredibly rare to the point that they don't really have viable statistics to refer to, and means I'll be in 'monitoring' for the rest of my life until they figure something new out. On the plus side, since it is the same cancer and has been most of three years from treatment, all indications are that it should be a 'soft' cancer, and responsive to treatment.

Not pretending this is going to be a walk in the park, but I think I know what I'm in for, and it almost cannot possibly be as hard as last time, down to location and treatment plan (chemo-based with radiation polish and targeting my chest rather than my face/throat, rather than radiation-based with chemo enhancement, targeting my face and throat!).

Looking back, I had a little pinchy pain 'deep in my left pecktoral muscle' some time late in 2012, which went away, then early in the new year this came back and got worse the next day, and sort of moved to the back of my shoulder. That was odd, and I couldn't really explain it, so saw my GP, who diagnosed likely viral pleurisy, which would run its course in 4-6 weeks. I also happened to see my Oncologist, who only because he could, and out of an excess of caution, ordered up a CT scan. Well, the CT scan showed a 'suspicious shadow' in my left lung, and the only thing for it was a needle biopsy of my left lung through my ribs (that was interesting), and a week later I learned that it is in fact a return of my original cancer, this being very very rare indeed, but not much of a doubt about it. Lucky me!

I actually feel fine at the moment, physical symptoms have in fact settled down to a minor ache in there if I take a deep breath, which if I didn't know what it was, wouldn't be causing me much concern. I may sing a different tune in a few weeks, and early summer is likely to be the worst, but only time will tell.

Emotionally I'm over the scared stage, the only difficult part is having to tell someone and seeing their reaction (that's very emotional). But for myself, oh well, lets get 'er done!

Be well, everybody!

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #162718 03-12-2013 07:06 AM
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Seth, Im very sorry you are going thru this!!! Its bad enough doing it once but twice is just horrible!

Do your best to think positive and stay busy to keep your mind from worrying too much. At least you already know the medical jargon and all that goes along with being a cancer patient. Its much easier getting thru this again when you already have your medical team in place.

Best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Stily1 #162723 03-12-2013 07:30 AM
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HI, Seth,

I wish you the best with your treatment. You have a great attitude [quote][/quote]But for myself, oh well, lets get 'er done!
[quote][/quote]

Your post illustrates the importance of when in doubt, check it out. Good thing you are so proactive in your own healthcare. Hang in there!

Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
Stily1 #162728 03-12-2013 08:40 AM
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Hugs - and so sorry - so glad they have a plan in place. Fingers crossed and prayers being said.


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
Stily1 #162731 03-12-2013 10:05 AM
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Stily1 Offline OP
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Thanks guys n gals. I'm feeling good. No dread. No fear. Maybe I'm a fool, but I'll take it while it lasts!


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #162733 03-12-2013 10:14 AM
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Amazing!! I know you are having a hard time considering yourself "lucky" but it sounds like this was caught at a very early stage. I have a friend who had a very similar story to yours - sore muscle, etc - got a chest xray and they found cancer. He is doing great now - and that was many years ago. I realize that is not the same as your situation - metasisis vs new cancer - but I am praying for similar outcomes.

Forget statistics. They don't count as the only statistic that matters is what happens to YOU.

Keep us posted on how this is going.

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Stily1 #162748 03-12-2013 03:32 PM
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Hope all goes well and best wishes for a speedy recovery!!Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
Stily1 #162761 03-12-2013 10:35 PM
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Posts: 61
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Love your attitude! Best of luck and keep us updated.


Do not go gentle into that good night. Rage, rage against the dying of the light.

31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
Cherri79 #162827 03-14-2013 12:32 PM
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Seth

Damn, yet another member of the Damn, I've got cancer again club.
It's not fair that you have to deal with this, but it's clear you will. You have beat cancer before and you will do it again
Keep the Faith
Charm

Last edited by Charm2017; 03-14-2013 12:34 PM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Stily1 #162834 03-14-2013 02:09 PM
Joined: Jun 2010
Posts: 153
Stily1 Offline OP
"OCF Canuck, across the pond"
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Posts: 153
Thanks everybody. I'm nearing the end of day two of round one. Cisplatin the first evening followed by now most of a 24-hour bag of 5FU. Nice room, good food, can't complain. Had a bit of nausea in the morning, quickly and effectively medicated away. I could say I feel as if I have a slight hangover, maybe. No other side effects to speak of (yet).

So! Not so bad so far.

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
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