| | Joined: May 2014 Posts: 1 Member | OP  Member
Joined: May 2014 Posts: 1 | Hi. I'm Tracey. My husband Jim has recurrent cancer of the lateral tongue. Non-drinker, non-smoker, 53 years old. Stage 3 maybe? Not clear on that. Stage doesn't seem as important to docs as treatment (duh). After two surgeries and a partial tongue resection, we are currently gathering second opinions, as the prevailing protocol is the (barbaric) tongue removal | | | | | 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 | No... I mean.. well No. Hi there... I am not sure where you are being treated, but it should definitely be at a comprehensive cancer center. Ideally - depending on how advanced the cancer is/was he should have had the tumor removed and then a follow up with rads and chemo. Has he had his nodes removed? I had a stage 2 cancer, well to moderately differentiated that was apparently confined to my tongue. My ENT (top guy in his field) told me he was removing 1/3 of my tongue and 40 lymphnodes regardless of what my MRI and CTs said. His experience with this cancer is that it is sometimes in the nodes on a cellular level and, as such, isn't picked up on a scan. He was right. He removed everything and then sent me on to have radiation and chemo in one fell swoop. 3 months of HELL but well worth it.. so far. (I hit my three year mark of treatment completion a week ago). This cancer can be stubborn and deadly. That said the staging most definitely matters. It tells you a lot about the cancer and how it should be treated. The differentiation is also important. The more aggressive the cancer (your husband's sounds aggressive if he's had numerous surgeries and its still hanging on) the more aggressively it should be treated. You didn't give dates or anything so it's hard to answer this fully. But if his recurrences have all been within a fairly short time period, up to two years say? then I would say it is not only time to bring out the big guns (rads and chemo for sure) but also consider changing surgeons. They may be able to remove the bulk of the tumor without removing his whole tongue. Then hit him with rads and chemo as follow up. This all depends on the size and location of the tumor, of course. I personally wouldn't count on rads and chemo alone for this particular cancer. It works well for HPV related cancer but is often NOT the only treatment used for non HPV related Oral cancer. So I guess I am saying you really need a second opinion from a CCC - if then it is determined that he needs to have a total glossectomy then you know you have done your due diligence - and to be honest, we've had a few people here who have had full glossectomies and are doing very well. MissKate would be one of them - she can eat, taste, and speak. So it is doable as barbaric as it sounds. Whatever you choose to do do it quickly. Hugs and again - welcome.
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: 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 | Welcome to OCF! Below is a list of comprehensive cancer centers (CCC). They are the countries top hospitals to treat cancer. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and go with it. CCC list US News Best Hospitals List Choose carefully! Surgeons cut and once its gone, its gone forever. Whatever specialist you are seeing will advise to use their treatment. This is why a CCC is usually the best place to go as they use a team based approach to make their treatment plan. Best wishes!!!
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: Apr 2014 Posts: 11 Member | | Member
Joined: Apr 2014 Posts: 11 | Welcome Tracey
I hope you find great support on these forums as I have.
CG to Chris
DX stage IV tonsil SCC HPV18/16+ T3N2bM0 5/12
PEG and 4 teeth out 7/12
RAD 35x, 3x cisplatin 8/12
treatment finish 10/12
PET clean and PEG removal 11/12
PET lung node 3/13
failed node removal 4/13
PET lung node 6/13
Lobectomy DX SCC lung new primary Stage I 7/13
CT clear 10/13
DX ORN 12/13
CT clear 1/14
Current list;
Dry mouth, dysphagia, nerve pain, ORN, spinal stenosis, dental caries, reflux, aspiration.
| | | | | 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 | Tracey,
Anything going on?
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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