CSN Login
Members Online: 14

New Kid on the Block with Squamous T1 & more questions than answers....

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

I'm a newly diagnosed Squamous Cell, base of the tongue, T1 with uptake in the lymph nodes of one side. I've just had my first round of meetings with doc's (surgeon, Oncologist, Radio) and am really not sure what to do. I've been accepted as a patient at MD Anderson in Houston so I will be traveling down there next week to see what they say.

As I understand it my options are:

1. Robotic surgery to remove the 1cm tumor on the base of my tongue and simultaneously remove the lymph nodes on the right side of my neck (and possibly left too). After that, reduced duration and intensity radiation with a 70/30 shot of no chemo.

2. Standard rounds of full radiation and Chemo. No surgery.

So, unless I'm missing something, the benefit of surgery is the chance of skipping the chemo, or am I missing something?

If anyone has gone through one could you please let me know what to expect? As you can imagine, sleep is not coming easy these days.

Thanks,

Joe Cortney
Dallas, TX

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

wouldn't presume to dispense medical advice...except to say that for me, chemo was a minor inconvenience. radiation was (and 9 weeks later, still is) a *****. didn't have surgery for my HPV+ tonsil SCC.
but the type of chemo matters greatly. I had erbitux, which as a [non-platinum] antibody doesn't result in hearing loss or organ damage. cisplatin is platinum-based, and kidney damage is a possibility. on the other hand, for people who come up allergic to erbitux, the skin reaction can be severe. so yeah, I'd find out what they want to give you for chemo.
from my time of these boards, radiation pretty much hits everybody hard. effective, but rough.
best wishes on full recovery!

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi Joe,

Sounds like you have a plan, two of them. Because they caught the cancer early (I think) you do have the options presented to you. The options are highly dependant on previous results your team has experienced. There are probably more ill side effects to chemo than surgery, but each has its own unique problem set. I would listen closely to what they say and trust in their judgment. Either choice leaves the other in the “bull pen” warming up. There are many people here who have gone without surgery to great success and there are just as many who have had surgery and gone without chemo, again with good results.

For me, my ENT opted for both. While he felt good about the tongue and neck surgery he could not guarantee that there weren’t some cancer cells lurking behind (my words). So, I had the trio of treatments (surgery, rads & chemo) and so far to great success.

Another thing is to take some one with you to help gather, digest and decipher everything they throw at you. They are not trying to confuse you; there is just a lot of information.

Good luck, God bless,

Matt

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I'd wait to see what they have to say once there...if you trust them, they should tell you what they recommend.

Myself like Swamp above, I had STGIII SCC HPV+ Tonsil Cancer and a Lymphnode.

My treatment was surgical removal of the tonsils, nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. The 5FU was from a woen pump (5 days) injected through a power port that was implanted.

That followed up with an additional seven weeks of concurrent weekly chemo (carboplatin) and 35 daily rads sessions.

For me the the chemo wasn't a big deal...with EMEND (anti-nausea drug), I never got sick at all...nothing else effected other than losings taste for a week or so at a time, losing my hair once, and toe nails once..., LOL...other than that I was fine.

Like mentioned, the radiation is the one with the most long term effects...loss of taste and saliva for many months, depending on site of treatment.

Treatements consist a combination of surgery, chemo, radiation or a combination of any of the three.

Bottom line...it's all doabale, and you'll survive it...

Each of us are different and react/recover different. You might slide through relatively unscathed, or be hit hard with a lot of the side effects....still doable.

Rough yes, doable, yes...survivorable, yes....

There are many here that have went through the tongue cancer and Tx and will be on before long with additional comments....

Mean while...Welcome.

We do have a s\SuperThread here that does offer a lot of good info and links to additional information;

SuperThread

BTW, I'm going on four years post treatment and doing well... I'm one of many with similar outcomes.... More than likely, you will be also.

Best,
John

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Hi Joe, welcome to our little slice of the internet.
I was dx with stage 2 tonsil cancer HPV+ no lymph involvement, I had
the choice of :
* Robotic surgury, neck disection and rads and chemo if necessary.
or
* 33 rads only ( no chemo ) , I was offered it but said that I didn't
really need it, it would just help the tumor respond better . But with
my cancer being HPV+ they said it responds better anyway.

Well I chose the 33 rads only and whatever happens in life I have
to live with that decision. I'm almost 5 months out and doing pretty
darn good, I'm doing everything I used to before the C only my taste
and saliva are off. I don't take any meds and have no pain or problems
so with the good lords help I think 'I' made the right choice for me.

I can't tell you which way to go I'm just saying what I did, but whatever
you choose I'm sure it will be the right one for 'you'.

God bless
Tonsil dad,

Dan.

hwt's picture
hwt
Posts: 1821
Joined: Jun 2012

Welcome to the place none of us chose to be. Mine was cancer of the jaw, 19 hour surgery to replace jaw with fibula from my leg and titanium followed by radiation & chemo (cisplatin). The surgery was much easier on me than the rads/chemo. Following tx I have had one CAT scan w/contrast that came back "no evidence of disease". Basically, I put my faith in the surgeon and trusted his decision. The fact that you have choices sounds promising. If you don't opt for the robotic surgery upfront, would it still be an option at a later date if needed? I ask that because my husband had early stage prostate cancer and was offered several options, if he chose one of the options (can't recall which) and it didn't work then robotic surgery was no longer on the table as an option.
Prayers that the right choice comes easy for you after meeting with the doctors.

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Thanks all for the responses. Although none of us wants to think about or deal with any of this, it really helps to have a place to bounce some ideas around get some encouragement. I'll admit I haven't had much sleep or a meal sit well since this journey started in July, I'm glad it is getting close to time to actually do something about it.

I still don't know what I'm going to do as both choices have so many pluses and minuses, my leaning is to get the surgery so that I will have to have as few RADS as possible as it seems that radiation produces the most lasting side effects.

Anyway, MD Anderson on Tuesday and hopefully a great deal more informed when I get back.

Thanks all, in case no one tells you, this stuff really helps.

Joe

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

You'll thank me later....

Eat, eat now, eat all of those good things you like....

More than likely taste is going to go south for awhile....

Sooo, EAT....LOL.

Good Luck Tuesday, keep us informed.

Best,
John

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Also, let me give you my opinion what I would probably do.
I would decide on the base of the fact how the treatment will work for the future. I mean what would be my options for tx to fail or for recurrence later.

I know that side effects of chemo/rads can be very hard (my Dad is going thru them right now) but if that's what needs to be done for the cancer to never come back.. I would do it!

Ok, I know that there is no guarantee that cancer will not come back even with all tx possible, but... I would do anything to reduce that chance!

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Sorry you have to join out club...but with that said you can't find a better bunch.

My story : (by the way VERY SIMILAR to you)

Stage III base of tongue 1.5 cm tumor with one lypmh node involved (left side of neck) HPV+ (you will want to find out if you are HPV+).

I was not offered surgery. I was not offered "platinum chemo" ...

My only treatment was a form of chemo with a drug called Erbitux and radiation.

I am now 7 months post treatment and I have had a PET /CT scan 3 months after treatment which look very good (only a little bit of heat / hot spots they felt were due to radiation residue) I had a 6 month CT scan with contrast and was given a NED (NO EVIDENCE OF DISEASE). I have had a scope (camera with a light) put down my throat ever 30 days along with the above and all looks good. I have also had a "finger exam" where the ENT and Oncologist stick their finger WAAAAY down my throat and feel the base of my tongue each time I had the scope and all looks good.

So none of this will help you sleep, but ask for a sleep medication from your primary now (tell him why you need it and you will most likely get it) ...Ambien is what I take and boy does it really help!! (I am not a doctor)

As John (skiffin) said, eat now and gain all the weight you can.

One other thing. MD Anderson is from what I hear, the absolute BEST!!! Boy are you going to be in good hands!

My personal opinion here, if they offer you a feeding tube BEFORE treatments begin...I would take it as an insurance policy. Just ask them, they will expalin why some of us who have been through what you face say this. I lost 70lbs during treatment. Protein and nourishment will be your best friend.

Now go eat and sleep :) (I know, easy said)

Whispered a prayer for you that all will go well and that you will find a comfort space soon when all the questions get answered.

Tim

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

Sorry you had to join our club, but darn glad you found it....I found this site before I had any treatment, and they have carried me thru from Dx on March 5th to end (I just finished the last chemo 10 days ago)....you are in supportive and intelligent hands here. I did not have tongue cancer, my cancer was behind the nose, so surgery is out, with chemo and radiation as the only "cures". I had 35 radiations, and a total of 6 chemotherapies, 3 spaced 3 weeks apart, the last last 3 spaced 4 weeks apart.

MD Anderson is in the top 5 cancer hospital in the US, so you are in good hands...how a person "chooses" a treatment I don't know. I just know that even when I thought I would not make it thru one more chemo, I didn't beg off....I wanted them to hit it with everything possible....I do not want to ever go thru this again. More people will be on here with BOT cancer...as there are many who are part of this club.

Just let me warmly welcome you....and let you know that NO SUBJECT is out of our realm of talk...You will get thru this, you will....and having a cheering crowd surrounding you is a good thing to have.

p

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

Sorry you had to join our club, but darn glad you found it....I found this site before I had any treatment, and they have carried me thru from Dx on March 5th to end (I just finished the last chemo 10 days ago)....you are in supportive and intelligent hands here. I did not have tongue cancer, my cancer was behind the nose, so surgery is out, with chemo and radiation as the only "cures". I had 35 radiations, and a total of 6 chemotherapies, 3 spaced 3 weeks apart, the last last 3 spaced 4 weeks apart.

MD Anderson is in the top 5 cancer hospital in the US, so you are in good hands...how a person "chooses" a treatment I don't know. I just know that even when I thought I would not make it thru one more chemo, I didn't beg off....I wanted them to hit it with everything possible....I do not want to ever go thru this again. More people will be on here with BOT cancer...as there are many who are part of this club.

Just let me warmly welcome you....and let you know that NO SUBJECT is out of our realm of talk...You will get thru this, you will....and having a cheering crowd surrounding you is a good thing to have.

p

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Thanks for all the comments. Tomorrow is the run down to Houston and MD Anderson. As I said previously, my treatment choices are surgery-reduced rad or no surgery-full rad/chemo (basic I know, but that sums it up). So, as I read stories here and other spots am I correct that radiation is the major cause of serious side effects? And if that is correct, is there really a big difference between low dose and full dose? Thanks folks for putting up with all my questions.

Joe

hwt's picture
hwt
Posts: 1821
Joined: Jun 2012

I suspect the radiation was the cause of most of my side effects, however, I can't be certain. Seems the ONC wanted to blame everything on the rads and the Radiologist wanted to put the blame on the chemo. I had a higher dose of rads on one side of my neck and lower dose on the other side. Side effects did not seem partial to one side over the other. For example, sores on my lips were on both sides.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network