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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.


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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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

Last edited by wendys; 08-26-2010 05:47 AM.

Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear

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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.

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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


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,

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


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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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


Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
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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.


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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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


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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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


my mom, age 59.

12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
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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


Last edited by debandbill; 08-29-2010 09:10 AM.

Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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