OzMojo... Once you register you can not change your member name.

My advice... alittlescared... Go to where you know you'll get the BEST treatment. A facility that does ONLY CANCER will offer this. This is all they do day in and day out - (no regrets - )
I hear you on the lodge.
I get that it would be a hassle with the kids.
However, you will likely be tired and feeling unwell, being at the lodge will give you time to rest. You can go home on weekends and spend time with your family.
Do what will offer you the best chance of survival - so that you will be here for your kids when they get married and have children of their own. It's only 2 months of your life.
I know a lot of people say rads is rads, chemo is chemo. - anyone can do it. Chemo - yes - you can always go anywhere for that. Rads to me is different. They have a dr. actually designing the plan - it involves mathematics, location and knowledge on how best to hit the cancer and minimize overall damage. For this you want the best of the best. I know people say a good dr. is a good dr. and this is true but if they truly are tops in their field the best hospitals will hunt them down and hire them therefore I do believe the quality of the medical staff is different at a CCC.

Point in fact. My friend's mother in law was diagnosed at a local hospital (also a CCC) with stomach cancer. They were going to go in and remove most of her stomach and likely hit her with chemo etc.

I suggested a second opinion at a CCC in toronto that is the BEST hospital in the country and in the top 5 in the world. Got them a dr. they went for an appointment and were told. It's not really stomach cancer - its a tumor growing inside the muscle of the stomach. Much simpler surgery, way less invasive, and better outcome. She had the surgery and is doing amazing. Same with my father in law and his esophageal cancer. %15 survival rate. He's doing amazingly well. You CANNOT beat a top notch cancer center - they offer comprehensive treatment and do this kind of cancer all the time so they have seen it ALL.

hugs.

We are going to meet with the Drs at both Cancer centers. I'm trying to make a list of questions to ask them. if you can help me with the list, that would be great. I'm going to traveling early this am to get there, my appt is at 11am Eastern time. Please send me suggestions. We are meeting one Rad Oncologist today, and the other on Tuesday. Big decision. I agree, I want the best care, so we are going to interview each to decide, also looking online at their bios and publications. This is feeling very stressful with so little time to figure this all out. Here are some I was going to ask.

How do you determine the right plan for me?
Why do I do need Chemo and Rad?
How much Chemo?
If you are not targeting a specific tumor in my mouth and neck, then how do you know where to shoot the beams of radiation? what determines this?
What do you do to avoid my valuable glands and throat and heart or whatever?
I was told the radiation goes in one side an out the other, so it goes right through me? damaging every thing on way in and out?
is this the only way to kill the cancer cells?
what is my survival rate if I do this?
what can I expect for my quality of life after this? what can i do to better this?
what can I expect for pain once I start this? what can I do to minimize this?
How many of this exact procedure have you done?
Does your office have any referrals I could speak to that have been through this?
How long have you been using this machine? How old is it?
Is it the newest technology?

Then I'm stuck.... am I missing the mark here... I don't know. I just want to get better. I love my children and my husband, and I don't want them to grow up without a mother, very scared. Please help me through this. I want to make the BEST decision, but I'm getting tired and I have haven't even started yet. Went to dentist yesterday for 2 1/2 visit to start preparing my teeth for this trauma. Might have problem, so following up on that, then had to speak to my boss yesterday and tell him what is going on with me, then came home to 2-3 hours of helping kids with homework.

I will check here before I meet with the Dr. today, any help or advice or additional questions is very appreciated.

Sincerely,
Angela

I wish you the best of luck. Seems like you have enough questions to ask. Sometimes it's also a gut feeling or instinct who to choose or where to go and feeling confident about your selection other than by a resume.

Here is a handout from ASTRO to answer questions about radiation treatment, much of which is on this site too, but being time constrained, you may not get to read. "Facts to help patients make an informed decision"

http://www.rtanswers.org/uploadedFiles/Treatment_Information/Brochures/headneck.pdf

Angela
Ask what criteria they use for replanning therapy. This is sometimes needed if you lose weight and the radition isn't hitting correctly anymore because there is less of you.
Ask how make up radiation is handled if you miss a day or more do to illness or the machine being down. The closer you stick to the treatment protocol (both in timing and positioning) the better chances for a cure!
Hope your interviews go well!
Maria

Angela, you will know what to ask as the discussion unfolds. Try to view all this as treatment. Treatment designed to save your life. Treatment designed to give you more time with your family. You will make it through this.

Hi Angela,

The question about survival rate is one I would skip. This is a portal to the whole exercise of marking your calendar for your funeral. It only brings negative consequences and places your mind in a very bad place.

Rather, ask about QOL (Quality of Life) topics and if different treatment options have less toxicity yet similar outcomes.

If you have decisions where QOL and survivability are factors then you need to have that discussion - quality vs quantity. Either way once the treatment decision is made stuff all survivability thoughts into the envelope.

Standard of care. I would ask about and discuss the NCCN recommended guidelines and how closely your treatment follows them. Ask what specifics of your situation factored into deviations from the recommended standards.

Don't forget tumor boards. Make certain your facility uses a team approach and your case is reviewed by a group of experts. That alone is worth more than a second opinion as you are getting a dozen opinions at once.

Good luck,
Don

I sincerely hope your appointment went well. Hugs

Does anyone understand the "nodal Extension" with the 5 lymphnodes that were removed I was told I have no nodal Extension with cancer. All of the cancer was in the lymphnodes. they said this was good. I'm confused... my tumor board had some differing opinions. All 6 of them though I could benefit from having the radiation, and they recommended it. but where they were split is on the Chemo. 2 of them said based on 2 studies - one in US and one in Europe. There were 3 groupings, group 1 with nodal extensions, group 2 with NO nodal extension, and then one other group 3 that I cannot remember what it was. He said that the studies showed that both group 1 and group 3 benefited from getting the Chemo along with the Radiation treatments, while Group 2 with NO nodal extensions it was the same results with just the radiation as the ones with Radiation and Chemo. And that this was the same result for both studies in US and Europe. So 2 of the Drs thought I only need radiation, and the other 2 think I need Radiation and Chemo.... so I don't know what to do. I know he is the professional.. but I was hoping some of you may have some input on what the No Nodal extensions thing is...

If it were me I would have the chemo. Nodal extension means it's broken outside of the node and leaked into the surrounding tissue, chemo though not a cure softens up any remaining cancer and makes it more easily damaged by rads. Chemo isn't too bad. I had nausea a but but other than that it was okay. Mind you I was lucky some have a really tough time - but mostly people fall somewhere In the middle. I'm surprised they only removed 14 nodes. Hugs