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

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

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.

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

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.

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!

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.

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.

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

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.

If the tumor shrunk then they would not be taking the same amount of tissue to get clear margins as they would have to take more to get clear margins with a larger tumor. Again I'm not advocating against any opinion, I'm just suggesting you seek an opinion from a CCC BEFORE you let someone cut out your a major portion of your tongue. Heck the CCC might even recommend the exact same treatment but at least you will have a better feel for the decision that lies ahead.

Hi all,
I just want to reply to the post regarding people here getting radiation first. My Dr, an ENT was also part of a cancer board in MN. She took my case to the cancer board from day 1 and they always recommended surgery. After the 2nd surgery to try and get clear margins, I met with the radiation and chemo at a concer center, and niether of them suggested radiation or chemo would benifit me. They said the only reason they would suggest radiation and chemo was if sugery was not a viable option to remove the tumor. They also said after a successfull surgery, there was really no defind tumor to aim at with radiation, and they would never be able to find the "sub-microscopic" cancers cells if they were present, to aim at.
Sometimes I wonder at the wisdom of my dr's decision. But then I read about all the negative permenant problems from chemo and raditaion and that is no picnic either. It seems that no matter what the treatment path, it is pretty much a terrible trip and we are all left with lasting issues and scars.
I am not sure what my point is with this post. Other than maybe to point out the diffrent opinions regarding this disease. I just know that if my cancer does return ,I can have more surgery and I can also have radiation and chemo, which if I would have had that first, I would not have that option later. Thanks for letting me ramble.

Take care Scott, we are here for you. You have come to the right place for support, and to get questions answerd. Let us know how your doing.

Wendy

Here, here on the second opinion and a doctor pooh-poohing you. My philosophy is every doctor should automatically recommend a second opinion. After all, they're human and though they're educated and experienced, another set of eyes to look at things again, is a good thing.

Multidiscipinary route is technically the "new normal" at CCCs taking into account all modalities.

I'm sorry you found us this way but welcome.

Prayers for guidance and lots of support.

Hello everyone,

More updates...

Went to see oncologist yesterday and she reinforced h/n surgeon's opinion that the tumor is past the point of chemo/rad up front.
one test has it at 4cm and another has it at 6cm. They wouldn't be able to tell the true size until they get in there.

I meet with an oncology radiologist on Monday and will see what they have to say.

Oncologist yesterday said that the kp tumor board meets once a month and we don't have the time to wait for that... Also said that there aren't a lot of clinical/research trials to get into for this particular cancer - anterior oral tongue - and waiting to find one would just delay the matter and make things worse.

Anyway, I'm still looking for alternatives but don't hold out much in the way of hope for one.


I wish things were different, but they're not shaping up that way.


Scott

Scott,

You have the best of the best on this forum, very informative. I would really get another opinion from a Cancer Center even if you have to take out a loan. This is your mouth, speaking and eating you are your own best advocate.

Some of us have horror stories before going to a Cancer Center. I'm going to give you a quick horror story of mine before I went to a Cancer Center. My tumor was 1.3 cm when I had surgery started out the size of a pencil eraser. I went to an ENT he told me he would teether my tongue, I would have a peg tube to eat and my tongue might hang out the side of my mouth and I would probably drool. Good Grief!!!

I went to a Cancer Center a month later long story how I got there....I told them what was said, they looked at me in disbelief. I had the surgery at the Cancer Center and all of the above I was told by an ENT Surgeon did NOT happen.

Get another opinion from a Cancer Center and if they tell you what the first doctor told you then you won't wonder afterwards.

Their Tumor Board meets once a month I would have a problem with that. My CC's Tumor Board meets once a week.

Also, I didn't know the things I know now if it wasn't for the people on this forum I would be...who knows where.

I hope I'm not out of line, but what made me comment your Tumor Board meets once a month.

Take care and I hope all goes well for you.

Connie

Hi Scott, Glad to see you posted an update and are "getting the ball rolling". I hope that they are able to get that darned thing removed ASAP. You have my support from NC.

BIG HUG!

D

Scott, I really hope you take the advice of all the experienced patients here and go for a second opinion. Where you are being treated does not sound like a large facility. For a new patient to have to wait til the monthly tumor board meeting to get discussed does not sound right.

I had radiation and chemo first on my two seperate tumors. This was because the surgery would have been extensive. If I responded to the radiation, I would not need surgery. I got thru it and the tumors were gone! Unfortunately I have had recurrances but that is not anything to do with how I was treated. Radiation will shrink the tumor.

Scott,

I went back and reread your first couple of posts. When I went to Moffitt Cancer Center for my first appt. I took my slides (biopsy), my medical records CAT Scan and PET Scan etc with me. My first appt. was not near $1500. It was some where between $100-200. How I know this is because my insurance doesn't cover consults at a Cancer Center I paid out of pocket. I would have remembered if it was any where near $1500. My thinking is because I had all the info the Surgeon needed when I went to Moffitt the charge was a visit.

Let the CCC know you have the slides and medical records (PET Scan and CAT Scan) that does make a difference. Yes, I had to run around and gather all the info, was glad I did. I think it took me a total of 2 days to get all the info, made phone calls went an picked up the reports. Where the slides were sent (Orlando) for reading they sent them directly to Moffitt in Tampa. Moffitt wanted the slides to read for themselves not just the medical records report.

Hope this helps.

Take care,
Connie

If you dont even have a month to make a decision, you wont have time for a CCC.
Heck making the appointment can take over a week. Then youll have to wait another 2 weeks for the appointment they schedule. Then when you get there you have to meet with all the doctors which takes a week. Then they come up with your plan. It is a lengthy process. When I was with my mom at Anderson it was TORTURE. Everyday we had to wait I felt like it was another day of her life slipping away...we were just wasting time.
Going to a CCC IS the best thing to do, but unfortunately sometimes there just isnt time. All I think about regarding the last few months of my moms life is how often we had to WAIT for a doctor to see us. Everything was always 'hurry up and wait'. If she could have just gotten proper treamtent the first week she wad DX again, I think she would still be here.

I guess what Im trying to say is, if youre in a dire situation regarding your cancer and dont have time to wait, waiting to get into a CCC will cost you a lot of time

Not always, Emily...

We were seen by several doctors the day of our appointment (which was for less than a week from when I called) and had the consenses from the tumor board within two days so your experience was very different from ours at Moffitt Cancer Center in Tampa, FL.

What a blessing and reassuring to have doctors who see this cancer everyday (not once in a while) offer a treatment plan based on tons of experience and NCIC protocol.

Deb

I think time is of the essence in this situation.

My first experience at Moffitt was fast and furious. Granted my ENT got me an appt within a day but once there I saw 3 different docs (RO, MO and Surgical Onco) that same day and they even scheduled an exploratory to find my primary 2 days later.

I haven't jumped in for a while..but my experience at MDAnderson was quite different from Emily's mom. I was called within 24 hours of the online referral and was sitting with a team of doctors within a week and a half. Two days of tests and surgery 2 weeks later. I'm glad I took the time. Still the decision is a personal one. I know my original ENT told me waiting on that referral was ill advised as "the cancer would spread rapidly", but that additional 10 days left me with most of my tongue and cancer free. Worth the investment for me.

My doctors had a tumor board, and they still insisted on hemiglossectomy first with a free-flap transplant, neck dissection and then radiation.

It's a tough road to go down. You'll be in hell after surgery and then start to heal and then you'll be in hell again with radiation and chemo. But about a month or so after radiation, things start to get better.

I am 25 and they gave me no other option besides surgery first and mine they took the whole right half of my tongue and some of the left side so they could get clear margins.

Sometimes you don't get a choice of trach either, but you can ask and see. As of right now I am a month and a half out of radiation and almost 5 months out of surgery and I am back in school, my energy is back, but still healing from radiation and I have to go to therapy for lymph edema and my right shoulder from the neck dissection and for my left hand from the transplant. But for now they say I am cancer free. PET/CT scan is in mid october so will know more then, but so far, I feel good. Tongue still hurts when I yawn and eat and stretch my mouth, but not nearly as bad as it did before surgery.

Whatever happens, I wish you the least amount of side effects as possible and let me know if you have any other questions.

Take care

Hello All!

I wanted to update you on my status as it's been about forever since I've been on...

I went ahead and had the surgery, about two weeks ago - September 15th. It would have been nice to avoid it, but when the last of my options told me that there was no way to get my tongue back to its "normal" state, and keeping in mind the pending complications if you have chemo/rad up front, I relinquished my tongue. This was no easy decision by any means, but I think I've done pretty well.

I would love to catch you all up as to how I've gotten here and the events leading up to the surgery, but I don't have the time or wherewithal to re-type every thing. I've set up a blog - www.scottversuscancer.com - where I chronicle just about every step that I've taken on this journey. I also post regularly on twitter - @scottgotcancer

Of particular interest may be my post about coming home - http://www.scottversuscancer.com/2010/09/25/scott-returns-home/ - and the post about my meeting with the radiation oncologist - http://www.scottversuscancer.com/2010/09/25/meet-the-radiation-oncologist/ . It was this appointment which set me on the surgery course.

I did meet an awesome woman, through this board, [misskate] here in SF who'd been through pretty much the same procedure and I have to tell you how great it's been. She's been an active supporter, advocate, and friend. If you can, I recommend meeting someone who's been through this yourself. Their impact cannot be understated.

If you don't want to check out my site, here's an idea of where I'm at today:

"All in all, I�d say I�d did alright.

* I was able to keep about 25% of my own tongue (right side, base), which helps me speak already and with swallowing.
* I didn�t have to come home with a tracheostomy, which was a big deal for my self esteem. I have a hole where it was, but that�s closing up.
* I can breathe and smell mostly normally.
* I can walk, and have use of my arms. My left arm is a little messed up right now, but ought to get better.
* While I can�t eat now, soft foods are around the corner.
* They issued me a portable suction machine which I have yet to use, thankfully. I do get a lot of saliva, but can control it mostly.

If you wan to keep score, I would say that Cancer and I are tied at one point each. I�m not sure there can ever be a winner, though. No matter what I try, or do, there will always be an elevated risk of cancer returning and picking up where it left off.

Until then, I�m pretty happy!"

I'm trying to get caught up with various things around the house and on the computer, after which I'll make an effort to be more active here on the boards.

If I can be of any assistance to anyone, in any way- please don't hesitate to contact me.

Thank you all for your previous advice and I look forward to being a contributing member of this site!


Scott

Scott, I checked out your website. Boy you sure are brave to pose like that!!!! Ive been where you are after a major surgery last year. It takes a long time to recover from something as traumatizing as this. You really will get better but it will be a long process. The arm wound will heal but still end up looking like a shark bite. I have one of those too. I have 3 places where graphs were taken from my legs. You are fortunate that you only had one graph. Yes, I know it sounds rediculous to say that you are fortunate after what you have gone thru. Ive learned to count the small blessings in life. I love your positive outlook.

Im so glad you had the opportunity to meet someone from OCF. It makes a huge difference in knowing you are not alone!! I have been fortunate enough to meet many OCF members. They are my favorite friends

Rest and let your body heal. Best of luck to you

while i had the scars & swelling under my jaw having the trachy show didnt bother me at all , but as everything healed it slowly became an issue & i mostly was able to hide it under the collar of tee shirts . now thats long gone its just my crooked smile i get conscious of .