Newly diagnosed SCC tongue base T-1N-1 HPV16+

PJ47

Hello survivors, I recently had surgery (sept 4) a partial glossectomy (TORS) and a left neck dissection.  My surgeon at Vanderbilt meticuously collected slides of tissue from either side of the tumor, below it and several other places and found no evidence of cancer in any margins any where else on the tongue.  He removed the one tumor that had SCC in it and 15 others nodes from level 2,3,4,5 and none had any evidence of SCC.  He is reviewing the path slides himself to determine what the plan of care is now.  I have researched quite a bit and wonder what experiences some of you have had with IMRT. TOMO, Proton therapy?  I am leaning toward the TOMO therapy, but unsure I understand the nuances.  I have also decided I will refuse cistplatin, carboplatin etc as I have a compromised immune system and believe it would kill me.  I am considering targetd therapy like Erbitux.  Any positive experiences with this?  I have worked in Hospice for many years and have witnessed a lot of suffering and outcomes.  I am not afraid to die but do not wish to suffer for what ever time I have left.  Quality of life is important to me.  Thanks for your feedback and support in advance to a newbe.

debbiejeanne

pj, i only know about imrt. 

pj, i only know about imrt.  i didn't have chemo.  the rad is rough and leaves most w/some type of side effect.  everyone is different.  many here have had the chemo u mention and i'm sure they will chime in.  the rads are doable but rough at times.  it may take several months once tx has ended for u 2 start feeling good again.  you will most likely lose ur taste buds 4 awhile.  u will have dry mouth for awhile.  others on here will be able to give u mor info.  my rads were 4 yrs ago so i don't remember how long the side effects lasted.  i wish u the best and will b praying for u.  come here anytime u have questions or comments.  someone on here has prob had ur same dx or at least similar and can lead u thru the rough spots. 

God bless you.

dj

CivilMatt

been there done that

PJ47,

Welcome to the H&N forum, where decisions are many to start.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux). I had the 35 rads and 8 doses of Erbitux, I am 18 months post and from  today’s  perspective everything is fine, different, but fine. 

I guess you either take the battle to the cancer or let the cancer take the battle to you.  Since my team said it is treatable (I heard cureable) there was no choice, it was time to fight.

As far as why Erbitux, I asked why not platinum based chemo and she said with my presentation she had good luck with Erbitux.  Enough said. Erbitux was dripped in.

Right now I am going to spend some quality time and go hose the chicken poop off the sidewalk in the back yard (it is fun and I kind of love it). 

The life of Matt,

CM

phrannie51

Welcome PJ to this little

slice of the internet....Sorry you find yourself here, but you have found the best place on the internet to ask questions, and get them answered in a timely....and very supportive way.

I too only know about IMRT...or that's the only place I have experience.  Just in the last 3 or 4 weeks we have had members who have gotten SBRT and Cyberknife rads....now TOMO.....so many ways to go about this cancer business!!

Since you can't do any of the platinum chemos, I'm glad to hear they are offering Erbitux....several on here have had it, and the side effects seem (to me) to be less than Cisplatin.    Which ever way you go on the radiation, it sounds to me like your Dr.'s have your interests at heart.....trust in them.

Stick around and ask questions as you go through treatment....we're always here.

p

PJ47

debbiejeanne said:

pj, i only know about imrt. 

pj, i only know about imrt.  i didn't have chemo.  the rad is rough and leaves most w/some type of side effect.  everyone is different.  many here have had the chemo u mention and i'm sure they will chime in.  the rads are doable but rough at times.  it may take several months once tx has ended for u 2 start feeling good again.  you will most likely lose ur taste buds 4 awhile.  u will have dry mouth for awhile.  others on here will be able to give u mor info.  my rads were 4 yrs ago so i don't remember how long the side effects lasted.  i wish u the best and will b praying for u.  come here anytime u have questions or comments.  someone on here has prob had ur same dx or at least similar and can lead u thru the rough spots. 

God bless you.

dj

Did you have surgery first?

Did you have surgery first?  I was told I would need less radiation after surgery if I need it at all.

PJ47

CivilMatt said:

been there done that

PJ47,

Welcome to the H&N forum, where decisions are many to start.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux). I had the 35 rads and 8 doses of Erbitux, I am 18 months post and from  today’s  perspective everything is fine, different, but fine. 

I guess you either take the battle to the cancer or let the cancer take the battle to you.  Since my team said it is treatable (I heard cureable) there was no choice, it was time to fight.

As far as why Erbitux, I asked why not platinum based chemo and she said with my presentation she had good luck with Erbitux.  Enough said. Erbitux was dripped in.

Right now I am going to spend some quality time and go hose the chicken poop off the sidewalk in the back yard (it is fun and I kind of love it). 

The life of Matt,

CM

I am stage 3 tongue base

I am stage 3 tongue base tumor less than 1.5 cm.  Don't know if it matters much though.  Did you have IMRT?  There are so many new radiation treatments now it is confusing.  I used to have to clean out the chicken coop and the horse manure on our farm.  I'm with ya!  Have fun!

PJ47

phrannie51 said:

Welcome PJ to this little

slice of the internet....Sorry you find yourself here, but you have found the best place on the internet to ask questions, and get them answered in a timely....and very supportive way.

I too only know about IMRT...or that's the only place I have experience.  Just in the last 3 or 4 weeks we have had members who have gotten SBRT and Cyberknife rads....now TOMO.....so many ways to go about this cancer business!!

Since you can't do any of the platinum chemos, I'm glad to hear they are offering Erbitux....several on here have had it, and the side effects seem (to me) to be less than Cisplatin.    Which ever way you go on the radiation, it sounds to me like your Dr.'s have your interests at heart.....trust in them.

Stick around and ask questions as you go through treatment....we're always here.

p

Thanks for your comments and

Thanks for your comments and support.  Cheeze I have not heard of the SBRT and I think my college roommate had the cyberknife for her brain tumors but did not know they use it for SCC tongue base tumors.  So much to know.  I have not been offered the Erbitux just know about it and it seems to fit my dx. better.

Kreps

PJ47 said:

Thanks for your comments and

Thanks for your comments and support.  Cheeze I have not heard of the SBRT and I think my college roommate had the cyberknife for her brain tumors but did not know they use it for SCC tongue base tumors.  So much to know.  I have not been offered the Erbitux just know about it and it seems to fit my dx. better.

Hi

PJ - did you see Dr. Netterville? He is the best at Vandy!

PJ47

Kreps said:

Hi

PJ - did you see Dr. Netterville? He is the best at Vandy!

Yes I did and I agree he is

Yes I did and I agree he is the best.  Did you see him?