| | Joined: Jan 2006 Posts: 101 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jan 2006 Posts: 101 | Here we are again. Wednesday Erik discovered a lesion on his tongue, Thursday the doc saw him, Friday he had surgery and a positive diagnosis. They didn't even take time to do a PET/CT scan or anything. Planning that next week. Doc removed a quarter sized patch and fairly deep, but thankfully got clear margins. Now we wait for final path report and scans to know stage. But really does the stage matter at this point? It's cancer, it's a reoccurrence and it sucks. Bad night tonight-hate that he has to go down this road again,we all have to go down this road again. Seriously 3 times really rotten luck.
Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Jennie, Im very very sorry your family is going thru this horrible battle again!!! I saw your posts on facebook Late last night, sorry Im not on there as much as here.
I am also a 3 time survivor. I know how dismal the future can look when this happens. There are not very many 3 timers around. What upset me the most when I went thru it was I couldnt think of a single 3 time survivor that I knew. Now I know several that I have met over the last 3 years. Oral cancer patients have a bond since the OC club is a small one, but the recurrence club is an even tighter bond! My 3rd round I went into a 10 hour surgery with a Stage IV diagnosis. My doctors didnt think I would live thru all the complications but somehow I did.
Im hoping your husband has a speedy, painless recovery. It will be a long road but there really is a good life (even if it has limitations) after going thru this 3 times. It will take him a while to bounce back and he could need speech therapy, etc to help get him back on track. He is young and will get thru this, especially with you right by his side. The support of his family will be the motivation he needs to push him to recover. I wish you both all the best with everything the future holds.
ChristineSCC 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  | | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hopefully this is it for him and he doesn't have to face this monster again. It's bizarre it keeps happening. But not immediately - almost every 4 years. Wow... I would be looking to environmental factors to try and figure out the what and why.. Hugs and take care we're all with you!
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: 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 | Like Christine I saw your posts and commented yesterday Jennie.
I am so very sorry to see that Erik has had a 3rd occurrence. Glad to see you are both home now and resting.
Hope the clear margins also turn in to a clear pathology report.
Thinking of you both and sending hugs.
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: Jan 2012 Posts: 112 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2012 Posts: 112 | Hi Jennie, sorry to hear about this. I always freak when i hear stuff like that. I also had tongue cancer.
Did the doctor explain why it keep happening after so long time? Did the tumour was well differentiated or poor diferentiated? Did he smoked anytime?
Id be happy to hear from you or to help in some way
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Jennie Those of us in the recurrence club (patients & caregivers) get [quote]But really does the stage matter at this point? It's cancer, it's a reoccurrence and it sucks[/quote] at a visceral level. I know how hard the second time was for me and my wife and I can only imagine how terrible this is for you. While I hope the pathology reports and scans are good, if they are not, don't believe the standard advice that your husband cannot get more radiation or chemo. I'm living proof you can. So there is hope even if the news is bad. Also, I would not give Erbitux a third chance but switch to carboplatin if there is chemo. My MO ditched the Erbitux for my second TX since in his opinion, if the Erbitux had done its job, my cancer would not have come back. He's working on a test to identify the 50% of us for whom Erbitux is worthless but so far it's just luck of the draw. So sorry to hear about this. It does suck Charm
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
| | | | | Joined: May 2012 Posts: 18 Member | | Member
Joined: May 2012 Posts: 18 | I am sorry to hear about your situation, mine is just as bad, my husband had the 3rd reoccurrence within 5 months and has been in pain and he refused to fight anymore, the surgeries tore him up and he was going to try and go to Cancer center but just taking him to a hospital an hour away was way too much and he said he had enough, called hospice in and fighting with getting meds under control, getting progressively worse, sometimes i wish he would have tried radiation the second time, but he refused! Said he would let god decide!
CG to Joel 1st tumor flr of mouth 1998, 38 rad trmts 2nd tumor back of mouth/throat, rad neck, part remvl of jaw, soft palate rmvl, no chemo or rad, has a peg tube since dec 2011.Frmr smkr 25yrs ago, drinker, worked in HVAC indus 35yrs. 3rd dx on 6/20/12, hospice6/29/12, died July 17, 2012
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | It's really too bad a cancer center is the plac to go - and they can offer him pain management too. 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: Jan 2006 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2006 Posts: 43 | I am doing awesome again now that I am again cancer free and my back is fixed. Now if they could just hurry up and figure out what is up in my genetic code!
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
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