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#136581 - 07/11/11 02:51 PM Re: Wondering if it's worth it [Re: Charm2017]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1269
Loc: Los Angeles
Morgan, I know you're scared. But I must agree with everyone. I personally don't believe in miracles. Which is not to say that great and wonderful things don't happen now and then. As Christine says, we're all different.

If I were you I'd read over Charm's post again. He pretty much nails it every time, as he has here.

We're all in your corner!
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 5 years all clear in 6/14

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#136590 - 07/11/11 08:19 PM Re: Wondering if it's worth it [Re: morgan44]
RPCV Offline
Gold Member (200+ posts)

Registered: 10/04/08
Posts: 251
Loc: VA
Morgan44,

Originally Posted By: morgan44
The tumor is about the size of a nickel at the base (left side, toward the back...), and there is no lymph node involvement. I had a slight swelling of the left lymph node ..., that swelling (which was minor in the first place) has now disappeared...

"Watchful Waiting", as a strategy for dealing with oral cancer, is based on the hopeful assumption that you are "CANCER-FREE".

YOU ARE NOT "CANCER-FREE"!

"The tumor is about the size of a nickel...(left side, toward the back...)." This tumor must be treated or you will indeed die a horrible death! This is not a small tumor! It will not disappear or go away! Surgery, Radiation and/or Chemotherapy ARE in your future... the sooner you get with it the better.

If you do have a "death wish", please find a more pleasant way to die!

__________________________________________________

So you are "PAIN-FREE"! Wonderful!
Originally Posted By: morgan44
Finally, the combination of MethylPREDNIsOLONE (steroid), 4 mg X 2, and Tramadol-Acetaminophen/37.5-325 also twice a day, has all but eliminated the pain...
Did you stop to think the pain meds are doing this and the tumor is still there? PAIN tells us that something is not right with the body. Wouldn't it hurt if you stop the pain medications?

__________________________________________________

Click the following link to read page 3 of a thread started by wife and caregiver("JulieKay") about her husband Rich, who DIED FROM UNTREATED ORAL CANCER.

Richs Plea

Rich did not stop smoking and was not healthy enough to survive treatment. Scroll down this topic until you find a post from "debandbill" (Sat Jan 03 2009) that gives you a clickable link to Rich's Website.

This is is what death from OC looks like.

Note to forum readers: This is a graphic website, so don't go there if you don't really want to know. This is why I did not post the actual "shortcut" to the website.

__________________________________________________

Originally Posted By: morgan44
Since I've gone several days now with "no serious symptoms" reappearing or becoming worse, call me a procrastinator, but I've also never been known to jump right into strange bodies of water before I've tested it for what may lie beneath!

IF YOU WANT TO LIVE, you are going to have to make this swim. It won't be easy, and you will be swimming for your LIFE!

I know this sound harsh. We all are scared by this nasty cancer! It is terrible beyond belief. But you have choices to make. Keep in mind when you weigh your options that this is indeed a LIFE OR DEATH decision!

"Wondering if it's worth it?"

Your Call!


The wonderful folks on these forums will be here to support you no matter what you do. This is your new OCF FAMILY! cool

PS: I think 70 is young!
_________________________
Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"

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#136604 - 07/11/11 09:34 PM Re: Wondering if it's worth it [Re: RPCV]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Thanks for everyone's support. I fully realize I'm at that stage of denial, and that attitude probably stems from the fact that I've dodged the bullet (figuratively) a few times before, unrelated to cancer, so I'm convinced I can dodge this one too. I've never been afraid of dying, just not in pain.

So I'll go to the first radiation treatment on Wednesday, and take it from there.


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#136614 - 07/12/11 12:44 AM Re: Wondering if it's worth it [Re: morgan44]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8481
Loc: PA
Morgan, being in denial is one thing but being unwilling to see the whole picture is something else. We write all these terrible things not to be hurtful or challenge your ideas, but to make you understand what WILL happen without treatment.

Im glad you know what needs to be done and accept this. I know you dont want to do this. I felt the same exact way all 3 times Ive been thru it. But I had people depending on me. My children would have been left alone without anyone. I had to at least try to survive for them, I didnt do this for me. Im sure you have people who love you and need you to be here. If you dont want to do it for yourself, think of those you are close with.

Catherine is right, we are here for you and will help you as much as possible. We will encourage you when you want to quit and we will perk you up when you are down. OCF members are here to help however we are able to.

Best wishes!!!!!

_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#136616 - 07/12/11 02:00 AM Re: Wondering if it's worth it [Re: ChristineB]
ConnieFL Offline
Platinum Member (300+ posts)

Registered: 04/16/09
Posts: 329
Loc: Fort Myers, FL, Lockport, NY
Morgan,

If I were in your shoes I would go to a NIH Cancer Center. You can take all your records with you and the disks, they'll want to read the disks and will go from there. You can call yourself and make an appointment no need for a Doctor to refer you.

My late husband had Stage 4 Throat Cancer, 12 years ago. We didn't know anything about NIH Cancer Centers an ENT Surgeon and a Radiation Oncologist treated him, 18 months later he passed. It was the worse thing in my life to witness, I think to this day if we had known about Cancer Centers we would have been there in a flash.

The Cancer Centers have the lastest equipment and their speciality is only CANCER....I drive 2 1/2 hours every 6 months for my checkups, I wouldn't go any place else.

I understand you're in denial I was too. I thought this can't be happening first my husband then me. I would look at the lesion daily one day it was painful and red, the next day it looked like it was shrinking and little pain then it started to spread and quickly.

Listen to the people on the forum they know what they're talking about. Don't hesitate, step on it!!!!

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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#136623 - 07/12/11 05:58 AM Re: Wondering if it's worth it [Re: morgan44]
RPCV Offline
Gold Member (200+ posts)

Registered: 10/04/08
Posts: 251
Loc: VA
Happy 70th Birthday, Morgan!

Originally Posted By: morgan44
next Tuesday will be my 70th birthday.
This is Tuesday, right?

Originally Posted By: morgan44
I do see the oncologist team on Wednesday 7.13.11, and I intend to ask what the consequences might be...

Do you have someone to go with you when you talk with your team on Wed.? You will have a lot of info thrown at you at this meeting. It would really help to have an extra pair of ears, plus the added bonus of someone who can take notes for you. It is easy to be overwhelmed with the onslaught of new information.

After you have a better concept of the treatment plan proposed by your team at the "Foley Cancer Center", I STRONGLY suggest that you get a SECOND OPINION at a Comprehensive Cancer Center, as others here have already recommended. A second opinion might result in a "surgical only" solution, which does happen in Stage 1 or 2 tumors (no node involvement). I think most folks here would agree that this would be a preferable "Quality of Life" treatment option, if recommended as a viable plan by a top-notch team at a CCC.

If you get a second opinion at a CCC that is not near where you live, this doesn't necessarily mean you can't still be treated at you local cancer center. Often the CCC doctors can consult with your local cancer center and set up a precise treatment plan tailored for YOU.

It is important that Oral Cancer not be ignored. It is also important to be informed of your treatment options. I think most of us here feel a second opinion is worth time and effort.

Let us know how things go on Wed.! Remember, we are all here for you! smile
_________________________
Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"

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#136630 - 07/12/11 01:52 PM Re: Wondering if it's worth it [Re: RPCV]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 284
Loc: Kansas
Happy Birthday to you, etc, and many more!

I think virtually all of us went through some denial. It's hard. But that does not mean you cannot see this through the right way and have a life worth living afterwards.

I hate to throw more at you. You said in one place about meeting with your oncology team and another about starting radiation treatment on Wednesday (tomorrow?) Anyway, I second Catherine's idea about getting the second opinion, which I realize I have already said twice in previous posts. But,then you can compare protocol. And you may be able to use that protocol where you are in Vermont. It's a good thought. I guess what confuses me about your diagnosis/plan is that oral tongue cancer usually is more successfully treated with surgery first; it differs from cancer in the throat/tonsil area, which on this forum anyway, is often HPV related. Unless your cancer is in a place in your mouth that surgery would be really destructive to your tongue . . . If they can't do surgery they will do heavier radiation treatments/chemo. And that might be where you are. I don't know all about it, just have read a bunch in my spare time.

If you have someone to go with you to the meeting that would be great, as was suggested in C's post. And getting an appointment at a larger cancer center is not as difficult as what you might think, just get your records sent, jump though a few hoops, you are internet/computer savy, as has been established!

But, bottom line, I am so glad that you decided to fight what you have.

Best,
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#136718 - 07/14/11 09:33 PM Re: Wondering if it's worth it [Re: morgan44]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Hi folks -- thought I'd give ya'll a brief update. First, the closest comprehensive cancer care facility listed is Dartmouth-Hitchcock (Norris Cancer Care), in Lebanon NH, and I spent a couple of hours scanning their site gathering information that I could compare to Rutland VT's Foley Cancer Center where I'm presently being treated. Turns out Rutland also has all the same state-of-the-art equipment, and their treatment program for me seems like it would mirror what I would receive at D-H. I'm very pleased with the team effort and dedication there, and they all make every effort to accommodate all the physical and emotional trauma I have experienced (and probably will in the future).

Yesterday, I had the second "fitting" or measurements for the mask, and today a summary consult with the chief oncologist. He believes the best chemo drug for my particular condition would be Erbitux (cetuximab) which has the least clinical side effects (i.e., no common nausea, fatigue; that the worst side effect is apt to be a rash. So I agreed to have that once a week during the 5-day schedule. First all radiation is on Monday the 18th, with the combo on Tuesday.

HOWEVER, I looked up Erbitux online, and it sure doesn't look as user-friendly (for lack of a better definition) as he described. I realize the clinical trials for side effects listed on the web are small percentages, but I'm constantly reminded of the frightening side effects I had from Vicodin. So here I go getting all scared again. At least since I'll be right at the hospital every day, though, I'll be closely monitored for any unacceptable side effects.

At the risk of seeming like all I do is complain, now the only thing that had me worried is the uncomfortable position I have to lie in for 20+ minutes during the radiation. You see I also have osteoporosis, mild, but still hugely uncomfortable to lie flat on my back on that hard-as-a-rock platform. I've got through it twice, with the facial recognition, but both times paid the price the rest of the day with extremely sore muscles in my neck and shoulders from simply fighting to stay completely still in an awfully painful position.

BUT THERE'S GOOD NEWS!! I now have a neck brace, which I put on whenever I can feel those muscles start to tighten and know that pain will follow. It seems to solve that problem, and I'm confident it will help following each day's radiation treatment. Who knew a $12.00 OTC item would solve at least one of the side effects of this ugly disease which will undoubtedly cost in the thousands!

I'd be interested if anyone has had experience with Erbitux.


Edited by morgan44 (07/14/11 09:34 PM)

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#136727 - 07/15/11 12:13 AM Re: Wondering if it's worth it [Re: morgan44]
RPCV Offline
Gold Member (200+ posts)

Registered: 10/04/08
Posts: 251
Loc: VA
Hi Morgan,

Glad you are moving forward.

I think one of the reasons folks here keep advising you to get a second opinion, is because you have not said why you are not having surgery as a first treatment option. Please explain why you AREN'T a candidate for surgery.

Originally Posted By: AnneO
I guess what confuses me about your diagnosis/plan is that oral tongue cancer usually is more successfully treated with surgery first; it differs from cancer in the throat/tonsil area... Unless your cancer is in a place in your mouth that surgery would be really destructive to your tongue...
If they can't do surgery they will do heavier radiation treatments/chemo.

Distance to a CCC should not be a factor in getting a second opinion. A CCC might recommend surgery first!

Maybe you won't need Rad/Chemo treatment (I THINK you said there were no cancerous lymph nodes).

IF you can safely avoid radiation, you will have a better QOL following treatment.

BUT, you will NEVER KNOW if you don't consult an EXPERT in the field. I got a second opinion at Johns Hopkins in Baltimore (3-4 hour drive away), seeing one of the top ENTs in the country.

Getting a second opinion at a CCC does NOT mean you have to be treated there. It is simply a way for YOU to be in CONTROL of your life, and verify that you are comfortable with your decisions.

Memorial Sloan-Kettering Cancer Center in New York City, is the second-ranked CCC for OC in the COUNTRY.

Read this post from Leslie B to another new OCF family member:

Originally Posted By: Leslie B
As others have done, I would recommend a second opinion from a top-ranked cancer center...

Whether you choose to be treated locally... or at a center like [Memorial Sloan-Kettering] listed above, it's important to at least get a second opinion from a facility that sees a LOT of this kind of cancer. Assuming the second institution agrees in the diagnosis, that second opinion may concur with what you are hearing from the local docs, or you may receive a different treatment plan. (Davidcpa, for instance, got five opinions -- and five different plans -- before choosing the one from a top-ranked cancer center.) Because this cancer can impact so many functions (speaking, eating, breathing, and so on), you want to make sure to get advice from people who have treated this many, many times.

I'm reminded of a post from early last year by a then-new caregiver whose husband had been diagnosed with cancer by an ENT in New York City. She received much encouragement to get her husband a second opinion from Memorial Sloan-Kettering and wrote this after making an appointment there:

"The ENT guy said his practice (three guys) sees about one case of oral cancer a year.
[color:#FF0000]Sloan sees 3500 [per year].
A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there."[/color]

Check it out. If you can make a ONE-TIME TRIP there for consultation, I feel it would be time well spent. I think Medicare will cover second opinions.

Your present doctors at "Rutland VT's Foley Cancer Center" should be PLEASED that you want a second opinion, and offer any assistance you need in arranging a consult at a CCC. If they are confident in their treatment plan for you, they will welcome verification from another center. If they are hesitant or NOT HELPFUL, then this is a sure sign that you should RUN AWAY to another facility!

Everybody here is on your side. PLEASE take advantage of the collective knowledge this family has to offer! Keep posting!

My best to you!
_________________________
Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"

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#136728 - 07/15/11 12:25 AM Re: Wondering if it's worth it [Re: RPCV]
ConnieFL Offline
Platinum Member (300+ posts)

Registered: 04/16/09
Posts: 329
Loc: Fort Myers, FL, Lockport, NY
Morgan,

I'm confused is the cancer on your tongue or throat?

My cancer was on my tongue I had surgery, no rad/chemo, lymphnodes not involved.

If your cancer is on your tongue why are you having radiation instead of surgery?

I was sent to a Radiation Oncologist first he told me no way would he do radiation on the tongue, first surgery then radiation if needed.

It would help if you had a signature line.

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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