I went to see my new Radiation Oncologist yesterday in NYC for follow-up from last weeks initial visit. Thd doctor went over a few things, one being the IORT (Intraoperative Radiation Therapy) to be done on 8/20/12, and about getting full dose radiation, after healing from surgery, propably 6 weeks post-op, in addition too, chemo, since it is proven to be more effective when combined. I asked which I would be getting IOERT (neutrons) or HDR-IORT (photons), believing it was the last due to being able to go to smaller areas, microdscopic cancer with the HAM applicator this same doctor invented, and hat the amount of Grays were going to be used? I was told it would be HDR-IORT (High Density Rate) at 15Gy, and then 40-50Gy for EBRT (external beam radiation) afterwards, I assume it will be IMRT, which I already had at 60-70Gy. That's 132Gy total. When you go above 75Gy is when there are unacceptable toxicities, and is why most of us only get 70Gy at max in the H&N, and why it is rarely done twice, alhough, there are ways to do 80Gy when doing it twice daily or if your inital dosage to the area was less than 70-75Gy, and doing a flap with new tissue like I'm getting.

I mentioned, to confirm what I read, that most of the toxicities, fatalities, is not from IORT itself, but from the EBRT done previosuluy done before or after this procedure, and the Dr said I was correct. He was impressed with my knowledge, and staff gave me a few questions, which I answered lol, and told the Dr. I read his book, and studies. We all had a good chuckle when he said he doesn't care if I read his book, just as long as I bought it lol. The CT scan done last week showed two spots on my recent surgery site in levels III and V, where there was microscopic cancer left behind in June, and believes it's residual cancer, and reason why this must be done. I did feel two small nodules recently, but didn't know if it was from surgery or not. He went on to say the ENT will try to take all the cancer out, but doesn't know how much until the surgery, including skin, and will do a pectoral flap as I discussed with the ENT last week also, so I can have the additional radiation later on with fresh tissue to the area. I half jokingly said, it would be nice to stay like I am, and doctor reminded me if I stay like this, that is the problem, and told me he knows I looked around, and can honestly say, I will not get a better offer than this, and he fully believes this is the only thing that may be helpful.

As mentioned previously, IORT is only done in a few places in the country, one being the OR has to be fully shielded (by lead I assume) to do the radiation during surgery, set up with cameras, monitors in an adjacent room to hold the whole surgery team, ENT, RO, Physicist, Anesthesiologist, surgical nurses, and other staff, during the radiation the process that can take between 30 minutes, depending on dosage. They then change again before going back to the OR to prevent contamination. The ENT is in charge of surgery, but Physacist ensures certain quality checks for the IORT, dosage, and RO places the applicators, and adminsitors it...sort of like flipping the nuclear switch. HDR-IORT machines costs a few million dollars, so is another reason why it's not popular, but it's a last chance for many like myself, but is still dangerous proscudure due to toxicities, and possoble damage to the to the carotid artty, including CB, carotid artey blowout from surgery, IORT and post EBRT.

On another related matter, I sent all my medical records, beginning about 4 weeks ago, to Memorial Sloan Kettering, the number two cancer hospital in the country, a CCC, in Manhattan, just to schedule an appointment for a consultation, even before I went to this new hospital, so I figured to still keep with this process, even though my current treatment and doctor seems hopeful, and to see what they have to say. Coincdently, IORT is also done there for 10 years ago by my same new doctor while heading their team. After dealing with the gatekeeper at MSK, and faxing 300 hundred medical documents, expressing all pathology slides, 10 Pet scan discs, color copies of my RT, and other records. I called again on Thursday, after being told each time they need something else, that the RO looked at my file, and said there is no need for a consultation with me, and I should proceed with treatment at either hosital. Funny thing is I never told them about two? I did say I was a patient elsewhere at one hospital, but they all know each other anyway one way or another, no big deal, so I'm sure it was mentioned by someone I was shopping around?

I was still surprised MSK did not want to see me. I can see not wanting to do treatment on a difficult case like mine, but not even a consultation? The other thing that irked me is the way I was led by a sting for 4 weeks by the gatekeeper to send MSK everything, and I mean everything, which cost me around $500 to accomplish, and had to make several trips to get or release my medical records from my medical provisors.

Things have a way of working out sometimes, and believe I have the best doctor for my treatment now.

Paul, so sorry you got the run around with your faxes and medical records. Sometimes things have a way of working out in their own way. Sounds like you have made a very good well informed decision. Best wishes with everything!!!

Thank you Christine. I'm settled in what I'm doing now, confident in the doctor, so no more running around for me. Time to relax a little, and plan in my recovery. Thanks for your help.

Good luck guy. We are all pulling for you!

Thank you David. Not looking forward to this at all. I'll take each step at a time, surgery first, and recovering from it.

Hi, Paul,

I wish the best as you move forward with your treatment. Talk about being well informed...nice job on the research! Always better to have information than going in blindfolded. Hats off to you!

Anita

Thank you Anita!

Paul, my thoughts are with you. You've been on a tough path and you're meeting it with great courage and a whole lot of smarts.

Best wishes Paul, as you begin the journey. We're here for you! Keep in touch as you can.
Kathy

Thanks David.