Mama,

Personally, of course I am no Oncologist, but I would be VERY hard pressed to rads only. The rationale for chemo along with rads is makes a lot of sense. That is, platinum based chemo acts as a radio-sensitizer, meaning it makes the radiation more effective and the chemo in the larger doses may mop up any stray cancer cells outside the rad zones.

I also had induction chemo with TPF (Taxotere, Cisplatin, and 5FU). This triple cocktail is VERY powerful and generally kills all microscopic cancer cells as well as reduces the primary cancer too.

Mamacita,

I agree with Foo above. Chemo is rads helping hand. The tumors in my neck were extracapsulated so chemo was required as a mop up for any stray cells that may have been on the lymph highway. I'm surprised based on the size and location of your tumors that the RO is recommending rads only. All it takes for a recurrence is one cell taking hold. Chemo get's those little hiding buggers away from the primary site.

Good luck with the consultations!

Positive thought and prayers

"T"

I like to have the best of both worlds, a distant CCC, which is not far in NYC, but going 15 miles can take a few hours, and a local oncologist. who I keep in the loop with everything, who can handle any minor, sometimes life threatening, after care issues, as happened to me several times with severe anemia, acute kidney failure, infections, that were treated, hospitalized locally. A distant CCC may be too far away, doctor may not be available, and top ones seem to be away often giving lectures, attending seminars. A local dr may have even referred some to a CCC, who do the treatment planning, surgery, chemo, radiation, who may have a working relationship with a CCC, which is even better. Good luck.

Paul,

Given your very extensive treatment history and your own thirst for knowledge, you are quite qualified to pick and choose and assemble your own custom medical team, combining independent and CCC expertise.

The issue the other 95% face is going to a doctor on Monday, getting a biopsy and results later that week and learning they have cancer. Then everything is just a blur, fast and furious, and there is no time or ability to get up to speed sufficiently to make informed decisions about treatment and selecting the best medical staff for the specifics of ones case.

When faced with obvious substandard care such as "T" experienced, it becomes much easier to say PEE-OOH, this stinks and I am out of here. But most providers offer reasonable patient interface so it is much harder to evaluate their competence.

Even asking simple questions like, "How many cases like mine do you handle each year?" These can be overlooked with the overwhelming cloud now looming overhead, thundering CANCER at you.

So, if a CCC is an option for care, it is quite reasonable and prudent to seek and push for having your care at a CCC, just play the odds the CCC will offer better outcomes.

don

I'm not saying not to go to a CCC, do so, but long after your treatments, maybe sooner, you will need care that is not a major issue, maybe not even cancer specific, although reoatec like anemia, kidney, thyroid, infection, teeth issues, etc, which can be treated/monitored locally, sometimes required weekly, instead of traveling, possibly hundred of miles, maybe longer, for some to their CCC. Many seen a local oncologist, ENT, before going to a CCC, and may be a good idea to keep them in the loop, not during TX, but after for future purposes, if not, sometime along the line maybe find one, and a CCC can help with that. I do, and after I see my MO, RO, and ENT every three months, I see my local MO to keep in the loop, and for prescriptions, CBC, shots, sign medical papers for various reasons, anything else I may need, who also oversees my care if hospitalized locally, which happened unexpectingly several times. One is not running to the CCC, if not nearby, for that stuff, and I'm close to mine, 13 miles, compared to some living further away. It is not my recommendation, but a professional one I read about, and what some CCC do anyway, treat the cancer issue, and send you back to your original doctor back home, wherever it is, and whoever he or she may be, for care. Mine did for my recent acute kidney failure in May...go see your PCP, which is basically my local hematologist/oncologist. I don't even think my ENT deals with dry mouth issues or anything minor, and is strictly a cancer surgeon. I would have to see the SLP for that. I left one CCC for my last treatment, and was going to be sent back to them after treatment, post scan, but coincidentally, my ENT at the other hospital left for private practice, and did not have any current ENT, although there was a replacement I never met, but I'm sticking to where I'm at now. That's another issue, some use the CCC as a stepping stone, and may not be there long term, but another doctor will be assigned. Since my original treatment four years ago, my MO and ENT left the hospital.

Here's where I landed.... I'm going to have chemoradiation at the large teaching hospital in my neighborhood, not a CCC.

My MO here is a national leader; he co-chairs the RTOG clinical trials board, edits journals, etc. etc. He explained quite clearly why I'm high risk for recurrence, citing specific research for every one of the assumptions that lead him to believe I need chemo:

-- "clean" margin <1 mm
-- retropharangeal node + multiple nodes
-- smoking history >10 pack years, regardless of how long ago

His recommendation for chemo contradicts the no-chemo recommendation from the RO and MO at the CCC, but his reasoning is sound and makes intuitive sense to me.

My local RO comes with the highest possible recommendation from the top RO at the CCC. I feel very confident with this team and plan, which as T points out is essential.

The local convenience is already paying off. The MO wants a baseline hearing test right away, and when they called this morning and offered me an appointment today I was able to leave work for a few hours to take it.

I'm very glad to have had my surgery at the CCC, and to have sought opinions there about my next phase of treatment. In my case, though, the non-CCC option and treatment plan turned out to be the smarter choice in quality of plan, quality of docs and logistics.

I'm super relieved to have made this decision this week and be moving forward. Thanks to everybody who helped me sort this out, I really appreciate the input and support --

<<<HUGS>>>

Mama

I know I am late to the party but I would like to relay another story. My brother had metastatic kidney cancer. He chose locally in a smaller city in a rural state. His do our was on the clinical trial boards for all kidney cancer. This alone gave my brother enough confidence to stay local. I would have to say the care was second rate compared to the CCC I went to. The doctors here even followed the case and suggested several things that were ignored and cause excessive suffering and struggles. He had to have his lungs drained multiple times yet they up used a needle each time and it was incredibly painful and the docs expected to do this often aince my brother was diagnosed terminal from initial diagnosis.

Also, dialysis was never even offered and the edema was so bad from compromised kidneys that he gained 50 lbs in each leg. After weeks of complaining they sent someone over to wrap each leg over 2 days. It brought the weight down almost 100 lbs total and prevented him from wearing a pressurized suit because of the pain. Over the two years of suffering I believe had just these two areas been addressed early, quality of life would have greatly improved. My brother was offered lading edge treatment ala clinical trials and this was what his doctor did. When the trials weren't panning out, my brother changed doctors and the care improved exponentially till the end. However, the quality of life issues prevented him from enjoying his last two years beyond what I would call inhumane.

None of this is meant to create fear but the truth is...many only get one chance to fight this horrible disease and the things I have seen in the past 10 years are enough to keep me seeing the best possible treatment in terms of doctors and facilities.

It must have been so hard to see your brother suffer, and believe it was preventable. My heart goes out to you.

I know CCCs are the holy grail around here, but I am the wee small voice in the corner saying, "...usually best....not always." I think it's dangerous to assume that CCCs invariably provide better care, and close-minded to conclude that no non-CCC institution can ever be as good as a CCC.

The non-CCC I am using is a large, academic and research institution that treats HNC all day long, has a dedicated HNC team, the same technology as the CCC, and some major talent assigned to my case.

Many, many people don't have the luxury of a CCC due to distance, insurance, logistics, disposition, you name it. Please don't make them feel anxious about their option. Consider that 16 U.S. states do not even have a CCC. In my case, going to the CCC would mean foregoing chemo. Maybe some will think that if that's what a CCC recommends, that's what I should do.

Hey Mamacita,

I'm glad you made a decision to go with your gut on the team. The fact that the CCC recommended the RO had to make you feel good. Researching your team members and their credentials is a vital step in giving you the confidence to move forward. I agree that there are many non CCC hospitals that are on the cutting edge and a teaching hospital is often filled with the best and brightest. Johns Hopkins is a teaching hospital and a CCC and I can tell you that some of the interns and students that attended to me during my treatment were scary smart! You'll be in good hands I'm sure.

Now, get yourself ready for the ride. No sugarcoating here...it's a rough one. It sounds like you have a good team behind you and one that is looking out for your best interests and survival. Now, go kick cancer's a$$!

Positive thoughts and prayers

"T"

As I have previously posted earlier in this thread, it does make a difference where you are treated. This is not an opinion, it is a scientifically proven fact explained in greater detail in the links on my other post. A hospital can only be as good as the people who work there. Not every single small facility gives sub-par care and not all CCC's are created equal either.

OCF will always recommend a patient get the best doctors and get treated at the best facility they are able to. Everyones situation is different and they need to do whats in their own best interest.