WOW! What else can I say. Such positive, insightful, thoughtful, and empathetic responses.

My limited experience compared to folks like you all strongly suggest TPF side effects are generally manageable, maybe even less problematic than the standard CRT with platinum. If the frequency of nasty, long term, side effects was even reasonably probably it seems to me the medical community, being that it is on balance, very conservative, would have warning flags about it and the regime would not even have FDA certification.

Even though today I lean toward doing TPF induction sequence then CRT, the topic of second opinions often arises. This may sound elementary, just what is the definition of second opinion?

I guess I feel I have "second" opinions at hand. I am VERY VERY lucky to have a HNC surgeon who received a fellowship at MSKCC in head neck cancer not all that long ago, so that alone offers me extreme comfort. His parting words at the initial consult was be aggressive! The MO seems quite competent and after thoughtful and careful study of my case, suggests the induction due to the length of time the cancer has been there, migrated to lymph nodeS, the spots in the lungs on the PET-CT, and the potential for loose but undetected cancers. The RO is the one who presented the alternate position - induction studies are not complete and side effects can impact the main CRT series, so his position is to be more conservative and pass on induction.

My very long time primary, who I do not see now (insurance related), called me last night to check on me, and her words echo many - get aggressive and go after all the cancer the first time leaving the lowest potential for recurrence. I'm sounding like a broken record.

All my doctors are actually associated with different hospitals (insurance) and doctor groups; collectively comprising an enormous library of experiences that checks the "second opinion" box for me.

Finally, my case goes to a tumor board next week so there are other numerous professionals that will weigh in. Never been to a cancer tumor board before, thank God.

Living in a metro area of 6 million plus people offers many excellent choices and very good quality choices including world class centers of excellence. The centers I go to are large, well equipped, handle high volumes of cases, and staffed with many professional with vast and differing backgrounds and experiences. This seems like another inherent source of "second opinions.

Obviously, my confidence level is pretty solid with the resources currently available to me

Am I missing something?

The only other option might be to seek out opinions from the other two local main research CC nearby: Stanford Cancer Institute and UCSF Cancer Center. I do not think those are options (insurance); although, I have not explicitly inquired as yet and hear the clock ticking louder each day to get some treatment going and arranging these alternate reviews is going to take time, even if they can be contracted.


Thanks
Don

Don,

This is such a tough time for you and your family, I am sure. I know, emotionally it was the hardest for me..that time between diagnosis and treatment when you are making life and death decisions between a miriad of options and approaches. I feel your pain, believe me.

I guess the question you have to ask yourself is, "Have I done all I can to answer the what ifs to the extent that I can." If you are comfortable with the answer, then make your decision and go with it.

Bill had a similar tumor and dx but with no nodal involvement. We were not offered induction chemo..just a very aggressive radiation schedule (hyperfractionated...2x day) and a weekly chemo (see siggie.) This was by a comprehensive cancer center - Moffitt in Tampa Florida.

I note that you mention a tooth needing to be pulled yet in your signature. I think you are already aware that that needs to happen before your treatment starts..right?

Sorry we are all giving you different approaches, I know it would be easier if there was one simple answer. Good luck with all of this. You will feel better (at least mentally) once you make that decision and get going with treatment.

Deb

Here is a list of the country's top cancer centers. This should help you if you choose to look into a second opinion. A second opinion means going to a completely separate hospital, one that is not affiliated with the one you currently have gotten your opinion and treatment plan from.

NCI Cancer Centers

I know it may not be convenient but some patients will travel to get the very best medical care from the country's top doctors and cancer centers. There are even airlines which will give discounted or free flights. Several major cancer centers have special facilities nearby for patients to stay for free or very low cost (like $5 or $10 a day). So dont rule out places like MD Anderson (TX), Sloan Kettering (NY) or Johns Hopkins (MD) just because of distance. Think of it this way, you may have only one shot at getting rid of the cancer so you would want to pick the most experienced team who can provide you with the best medical care.

Don,

See my Signature Line. BTW I'm still posting...lol

Thanks David,

Exactly. That is one reason there is no determination on the efficacy of induction sequential to CRT. Many do fine without it, the question remains how many more can benefit from doing induction.

So glad to hear you are enjoying life, I am sure every day you feel is a gift.

Don

Christine,

Thanks for the link. I am fortunate that three of the main centers are within 70 miles so all easy drives. The issue I need to look into is how to request and obtain approval for second opinions outside my insurance system. Guess that will be on the list for tomorrow.

Thanks
Don

[quote]I note that you mention a tooth needing to be pulled yet in your signature. I think you are already aware that that needs to happen before your treatment starts..right?[/quote]Yes, I had one pulled and it is fully healed. The dentist wanted to pull a second one at the same time and I was just freaking out about getting any pulled. So I made a second appointment to get the first one pulled. I just decided to get the second one pulled this week as it seems the path with the lowest potential for affecting the main treatment regimes.

I have at least a week of slack so I need to get on it soon but who wants to get teeth yanked. oh well, I am sure this is just the beginning of making unpleasant decisions.

And you are correct, that each person needs to feel they are making as informed a decision based on their own health diagnosis and factors, and the time and resources available to them to conduct their own research and due diligence.

I'm close - for me the only really open issue is that I need to satisfy myself that the induction side effects are worth the known and potential benefits.

The balance on the scale seems pretty clear - kill more cancer and make CRT less invasive vs longer treatment plan and side effects from induction and potential impact to the main CRT plan.

Thanks again
Don

Check into the Fluoride trays. Most of us used them throughout Tx. I used them every night for almost 5 years POST Tx.

Hi Don,
The one thing I didn't mention in the PM is that Kevin did, indeed, lose some of his hearing. Just wanted you to know.
He also lost 56 pounds, so the PEG isn't a bad idea. Although he didn't choose to use it for much more than medicines. He drank Ensure when the eggs wouldn't go down anymore!
Kathy

Hi Don,

I was recently diagnosed with tongue cancer and I live near you in the Bay Area. I live in Dublin, CA and am seeing an ENT surgeon at Kaiser in Walnut Creek. He is supposed to be one of the best. I just wanted to check in with you and see where you are going to since we both live in the East Bay. I haven't had my surgery yet but I'm optimistic it will be just that without follow up radiation or chemo.