false hope

Same Story
Sorry Andy, I'm not sure what you were diagnosed with. But in my case and most others here that were diagnosed with tonsil cancer and lymph involvment. Most either have surgery, chemo and/or concurrent chemo and radiation.

Not all but a lot have at least chemo and/or chemo and concurrent chemo and radiation. From what I've read, the surgery and radiation primarily deals with the known areas, but chemo is more an overall body treatment to catch other areas or free floating cancer cells.

Sorry if you were lead to feel a false sense of hope, and I hope you have the minimal treatment that will take care of your situation long term.
John

Hondo said:

Hi Andy
Sorry your news was not so good as you might have expected it to be, but what ever the out come there is always hope. I have survived head & Neck cancer three times now and I am still going strong, so no matter how bad the report just hang in there listen to all the options and don’t be afraid to ask your doctors questions. Life after Cancer has it little ups and downs but it is still great just to be alive.

Hey, Andy
FWIW, I had my right tonsil and tumor removed, but there was never any doubt that I would need further treatment. I had Stage III SCC with one lymph node involved, and I had radiation (30 sessions) and two rounds of chemo (Cisplatin). The chemo was optional, but I was told my chances would be something like 20 percent better if I had it, so I did.

--Jim in Delaware

RO
Andy,

My RO might be related to yours. He was easily the least optimistic member of my entire care team. He once said: "If it's at all suspicious and you can't prove it's benign then I'm treating it as a malignancy." They live in a very difficult world and sometimes it colors their outlook. Keep your chin up; you'll make it same as so many on this board have. Best of health to you, Rich

Scambuster said:

Double Edged Sword
Hi Andy,

i was diagnosed with a tumor on the Left Tonsil. My ENT guy diagnosed me and said straight up the the standard treatment would be to irradiate it to shrink it, and then see how that went. Once the PET/CT scans were done the next day, I sat around a table with the ENT Doc, Rad Doctor and Chemical Ali (My Chemo Doc). We talked through the options and I asked if they could cut it out first. (I figure why let the **** tumor stay in my body giving it even the slightest chance to cause havoc) They all agreed.

The next question was if I needed Chemo as radiation was a given to clean up an missed bits. Chemical Ali was convinced I needed Target Therapy as well as the radiation (Erbitux) because in the Scan 2 lymph nodes lit up though indicating inflammation not mets. Meanwhile the other two Doctors thought not. What do you do ?? I ended up accepting the full monty.

There is no easy choice and you often wonder about the advice and way it's given. I think you need to feel comfortable with your doctor(s) and then trust them to know what's best. That does NOT mean let your guard down as you need to question everything and make sure you understand what is going including medications, treatment regime, and potential side effects and recovery. All of us here have been through it and glad to say most of us are doing OK once through the mill.

Standard advice here may be to seek a second opinion. That should at least give you more information to help you make these difficult and very important decisions.

Hope this snippet help in someway. Keep us posted.

Regds
Scambuster

Chemical Ali!
Thanks for making me laugh out loud, Scambuster. Chemical Ali. What a hoot!
My chemo doc is an Indian woman (Indian as in from India, not American Indian), and it almost makes me wish I'd had a male doc so I could have called him Chemical Ali.
Maybe next time.
Not!

--Jim in Delaware

ballonk said:

Hang In There!
Hi andyw: I can relate to how you are feeling. To say being diagnosed with cancer is an emotional roller coaster ride is an understatement of MAJOR proportions! When I first realized I had a problem on my tongue (in 2001), my dentist sent me to an oral surgeon for a biopsy. The oral surgeon told me he was 99.9% sure I did NOT have cancer. Much to my dismay, he called me at work 4 days later to say the biopsy results were in and I did indeed have cancer. Bummer!

Like most everyone here; we've all been through a lot of ups and downs while going through the treatment and recovery process. I am not a pessimistic person by nature but this battle had knocked me down several times. But I refuse to give up and keep getting back up and fighting back. Even when sometimes I've felt like giving up. I owe that to myself and my family and friends.

I wish I could tell you (and myself and everyone else on this board) that it's going to be OK. But no one has any guarantees in life so I pray that we all can make peace with our prognosis, maintain our physical and mental health, adjust fire when necessary and just enjoy what life we have left on this earth.

Warm wishes and hugs to you! Kathy

Yes
Truly, Kathy- words well stated in the overview.

Sorry to hear of how your battle started. Musta been quite a jolt, after what the oral surgeon had initially told you. With me, two tumors showed their ugly presences in a short time, and I figured it was likely cancer. Biopsys were nothing more than confirmation for me. The surprise was that they couldn't find the C in any place other than the tumors- which may or may not have been good news.

By my way of thinking, and based on experience- there is a greater truth that holds with everyone: one must only focus on the positive, albeit clinging to said positives. There is absolutely nothing to be gained by b------- and moaning about the negatives, and how unfair it is, etc. Hey, nobody wants to be told they have C. But that's the cards that've been dealt to us who have/had the C. The best path to take is so very simple- "okay, I've got the C, and now I must deal with it as best I can. And I know it is very possible I can win this battle. I can and will survive this. Come what may, I will survive." To dwell on the negative is to seek self-pity. Bottom-line. And it truly does not serve a positive purpose, other than those negatives being of one's foe in the battle, and recognition of those negatives is correct. However, it is the thinking that those negatives can get the best of one- that is not correct, and of the weakness whose core is self-pity. We all know how bad it can get with the treatment side-effects, and where it takes us; however, we all know our type of C can be survived. That is why we are here- for Mick and Deb and Steve, etc., etc.

We, here, are C-positives, and have either fought and won the battle, or are fighting it at whatever stage of the battle. That battle begins when we know it is C that we have, of course. And for us, the only way the C wins is if we let it. We don't have stage-4 lung. Yes, Kathy, the battle knocks one down several times, and the only appropriate way to deal with it is to keep fighting, and keep fighting, and to never give up. Yes, Kathy. 16+-months is where I am at, and 11+-months, post-treatment. To Andy, and all-

Believe

kcass