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Joined: Aug 2010
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I can think of about a thousand other forums that I'd rather be posting to, no offense!

To say that this comes as a surprise after years of smoking and drinking, would be a lie. To say that I'm surprised it's gotten hold of my tongue, would be true.

I had gone to the ER last December for an unrelated matter, but brought up the lump under my tongue while I was there. "Aphthous ulcer", they said. "I have one, too", crowed the Dr. No need to worry, just avoid stress and all will be fine.

One job folded and I waited a couple of months until the new job's insurance came up. Got it and went to the GP. He about fell over when I saw the mess that my tongue had become. I figured it was just ulcers, en masse. He sent me to an ENT.

ENT took a look and ordered a biopsy. Biopsy came back positive for SCC, oral tongue cancer.

Met with the Head and Neck surgeon he sent me to yesterday and had the worst day of my life (so far...).

Got the call today to set up surgery date - September 15.

Doctor said it will be hell. (nearly passed out as he went down the list)
2/3 glossectomy, trach, head re-section, feeding tube, check the nodes. reconstruct tongue. 7 days in hospital, 6-8 weeks recovery followed by 7 weeks of rad, and probably three doses of chemo.


To say that this sucks would be an understatement!

If anyone on here is in SF, I could use some support... Speech is labored, eating is no fun- much less swallowing.


I spend a lot of time online and can be reached any of the ways seen in my profile, or through here.

I'm especially interested in any advice people can give about non-surgical treatments as I'd like to keep my tongue!

If it helps, I have Kaiser HMO...


Thanks!

Scott


scc oral tongue cancer, stage IV
biopsied - 08/02/10
got the news - 08/10/10
staged (T4aN1M0)- 08/23/10
surgery (75% glossectomy) - 09/15/10
30x IMRT radiation completed - 12/28/2010
3x Cisplatin chemo completed - 12/27/2010
returned home - 09/23/10 (yay!)
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Scott

Advice on non surgical TX: Get a second opinion before surgery preferably from a Comprehensive Cancer Center. I had stage IV base of tongue cancer with lymph node involvement yet radiation and chemo did work well enough at first to give me a full year of being cancer free. Sure they ended up doing the surgery after all when the cancer came back, but for many of OCF posters, radiation and chemo did the trick. It may be possible to do the surgery later if radiation and chemo don't work. Unfortunately there are no other real alternatives, just wishful thinking and scams.
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
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You might want to get in touch with Gary, who's one of the admins here. He is also from the Bay Area and was treated eight years ago through Kaiser -- I believe his docs were at UCSF.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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UCSF is a CCC. I can give you details of the docs that treated me if you want an appt. I PM'd you. K


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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I would HIGHLY recommend a consultation at UCSF which is an excellent H&N treatment facility and getting an opinion from a tumor board there, that is made of of doctors from all disciplines, not just surgery. There are a bunch of ways to skin this cat, and initial treatment with radiation and chemo could eliminate this or at least partially reduce it to a size where you would not lose 2/3rds of your tongue, which will have significant quality of life issues afterwards. You need to take a few extra days RIGHT now to get that tumor board opinion of treatment possibilities.

Surgeons are very important parts of the oral cancer treatment process. But in determining possibilities... if all you have is a hammer, everything looks like a nail.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Hi Scott. Welcome to OCF. Im so glad you have found this place to give you the guidance to get thru this. I do agree with the others about getting a second opinion and the UCSF is a highly recommended facility.

Ive been where you are and you are right, today must have been an awful day for you. Try to always take someone along to every appointment to help keep notes and ask questions. A second set of eyes and ears is always helpful. Too often we shut down when hearing bad news and thats where the other person will be helpful.

Try your best to eat like crazy now. Eating will become much more difficult down the road so eat everything you can now.

Trach's are not fun to have but you can do it. Same goes with the feeding tube, that is a whole saga in itself. Ask for a possey muir valve trach so you will be able to talk with it in.

Make sure you get to the dentist to get flouride trays to save your teeth. Also get your hearing tested as cisplatin can cause hearing loss. These are very very important things to do asap. If you have any trouble getting a quick appontment, tell the person that you are a cancer patient and your time is limited before your treatments begin. They will fit you in immediately.

There ae many people here who have had partial glossectomies. The people I have met in person, you would never ever even guess they had this done. Their speech is very good and they look healthy, yet they have been cancer patients.

Best of luck 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
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Hi Scott, welcome. I'm not sure what determines who should get surgery and who should get radiation/chemo but I think the advice to get a second opinion at a cancer center is excellent.
We first met with a surgeon when my husband was diagnosed with tongue cancer. He immediately referred us to a member of his "team" for a radiation and chemo consult as he felt that would be a good place to start.
I think the team approach is invaluable because you have a whole bunch of smart folks considering you and your body from a variety of angles.


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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I would get to a Comprehensive Cancer Center and get another opinion. I would want someone who treats 100's of patients a year vs someone who might see 1 a month like you.


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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Thanks to everyone for their input! I'm so happy to see that this board is so active. Matter of fact, I'm meeting up with someone tonight who's been down my road and can offer insight. I'll be trying to meet with whomever I can, while I can, from this board as we're all in the same (similar) boat.

I've been down the list of cancer centers in my area and none seem to take Kaiser HMO. Seems they have a new center in South San Francisco that they're trying to get everyone into. I stopped into UCSF on my way home today and asked about a 2nd opinion there - they start at $1500 for the consultation alone, and then the tab keeps running. I won't be able to afford that... Still trying to look around and see what's out there.

A recent reply to an email from my doctor might squash any sort of necessity for a 2nd opinion.

He wrote:
"I do not think the radiation oncologist or medical oncologist would advise with nonsurgical therapy up front. If they did however, and, the tumor did shrink, we still need to resect the same amount as we will not be able to ensure clear margins. It has nothing to do with me going for that. The decision is yours to make. I am giving you the best recommendation I can to get the best possible result which is surgery up front."

So, even if the tumor shrank they'd still have to take out the same amount. Oh.

I'll be in and out of the boards for a while and want to thank everyone for what they've done so far.


I'll catch you guys around!


Scott


scc oral tongue cancer, stage IV
biopsied - 08/02/10
got the news - 08/10/10
staged (T4aN1M0)- 08/23/10
surgery (75% glossectomy) - 09/15/10
30x IMRT radiation completed - 12/28/2010
3x Cisplatin chemo completed - 12/27/2010
returned home - 09/23/10 (yay!)
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Posts: 4,912
Likes: 52
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Search for Gary on the boards and PM him. He also dealt with Kaiser. He is very knowledgable as a moderator on these boards and is in SF.

I do not get why your doctor would not want you to get a multidisciplinary opinion at a tumor board before moving forward. What's the down side? You get doctors - all from different backgrounds and training, all authorities in head and neck oncology, deciding TOGETHER what is likely to be the most successful path for you. That he is telling you what these other people would say, (is he also a radiation and chemo expert?) make me want you to get that second opinion more.

People here including me had radiation first, some with chemo some without. For me that meant NO intraoral surgery, and just a neck dissection afterwards to be sure, which turned out to be all negative for cancer. My first opinion was from Stanford from a head and neck surgeon, and he told me the same thing you are hearing. I spent a couple days calling people in the medical industry that I knew and they all told me to head for MD Anderson in Houston, where a multidisciplinary team chose my treatment path.... 12 years ago as a stage 4 patient.

Whatever path you choose we all wish the best for you.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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