Just in case new members get too excited about these videos, here's some comments:
First, that John's video describes standard procedure almost everywhere as part of plain vanilla IMRT. So no one suddenly needs to panic or worry that they were not treated this way. It's just so basic that most radiologists don't even explain it to patients anymore than they explain the differences between IMRT, Cyberknife, or Proton Therapy.
Second, Dr. Lee's opinion on the group video that she can do everything with IMRT that can be done with Cyberknife is somewhat misleading in that it is only true for first time radiation. In fairness to her, she did not claim she could do a second or third round of radiation with IMRT but she did overstate it since she did not put in any qualifiers.
Bear in mind that her NYC site of MSK does not have the machines to do Cyberknife nor proton radiation. I believe if Dr. Lee were asked, she would agree with my assessment.
Third: I do like how feisty she is, denouncing proton radiation as just "big hype" as well as sharing what both Kelly211 and I have been told, that for head and neck cancers, proton therapy may not be as good and that IMRT is actually better. Although that was somewhat undercut by her follow up that her NYC site is ordering a proton machine.(shades of Star Trek: Photon torpedos)
Fourth, I liked her explanation that IMRT and Cyberknife both use photons as the source energy, the difference is between how they are delivered. I would have liked a little more about how IMRT has to use multiple beams while Cyberknife rotates and can use a single more focused beam than IMRT. She did acknowledge that Cyberknife was like a top of the line fancy luxury car while IMRT is the standard car but the differences are more significant than that..
Otherwise, the videos are nice, but no new information that hasn't already been discussed here.
Charm

Nocam, thank you for sharing the videos.

Charm, as always, I appreciate your tendency to stand back an give a more scientific method way of analyzing the data in studies and things such as this. It's the smart way to do things. You certainly have had the experience and do your homework when it comes to different scientific studies. You remind me a lot of my husband, Dan, who has a BA in physics and an MA in astronomy. He is currently reading "The Emperor of All Maladies" by Siddhartha Mukherjee. He's learning a lot about the history of cancer and how treatment and research has changed throughout time.

Kerri

Thanks for those kind words. That is a good book about cancer.
Guess it shows that I had been a medical malpractice attorney demolishing doctors in depositions to the point where they'd settle. But just like criminal defense law, it was too depressing for me, plus I hated the firms making me ask clients: How much justice can you afford? That's why I switched to government enforcement.

Nocam

Yes, excuse my manners in not thanking you for posting those videos. Like they say: It's me, not you. From the enthusiastic tone of your post I was overexpecting some new technique. Shame on me for not taking it in the context of a Public Relations video on MSK's website instead of an oncological breakthru. Still, I felt it important to make clear to the OCF readers that checking the tumor size during radiation and adjusting the field is standard IMRT and not exceptional, even though not always explained. I of course demanded each week to see the scans and get a summary of the tumor size and effect of radiation which my doctors were glad to provide although they did mention that most patients don't want that level of detail . Goes back to my malpractice days.
Charm

I thought I would throw my two cents in here.

Cyberknife delivers less radiation in bigger bites over fewer sessions. For example; my IMRT delivered 70 gy. of radiation over 33 sessions (2.12 gy. per session) whereas my Cyberknife treatment was 50 gy. over 5 sessions (10 gy. per session).

Interestingly, the Dr. sitting next to Dr. Lee is Dr. Jatin Shaw who was the doctor I saw at Sloan. Dr. Shaw was the last Dr. I saw during my tour of second opinions after the IMRT treatments at U of M failed in getting all the cancer from my recurrence.

Dr. Shaw recommended I get the Cyberknife treatment at UPMC. I must assume that he felt since the surgical solution was off the table and I had already received two sessions of IMRT at 70 gy. each, the cyberknife would exposes me to the least amount of additional radiation.

Cheryld

Do you have any problem with aspiration or does everything work as it did before you had a partial tongue replacement with a flap? I keep hearing about aspiration being a probable problem and how dangerous it can be. Thanks for the offer about Facebook but that is something I have not anchored into yet.

Charm

You are very knowledgeable about so many details related to cancer and I thank you for explaining some things I know so little about. Are you familiar with the procedure of stretching and rotating the tongue to replace the portion of the tongue that has been removed? I always hear about the flap approach but, as a layman, it seemed stretch and rotate would be much better. Do you have a flap?

Dr Lee�s explanation captured my attention for I had never heard anything about procedures explained before. I can only relate to my own experience and I hoped all the best, very focused, steps were followed for me. It was my understanding that someone was going to show me what was on my Petscan etc. and show me, in general, what was going to be done. I was told nothing, even though I asked at one point. I meet for mask making and when I went in the next time radiation began. About mid-treatment I ask if they could tell what was happening with the tumor and was told nothing was know yet. Near completion of treatment I ask again and was told nothing would be know until a Petscan could be done a few months later after the area had time to do some healing. About 2 months later a Petscan was done and all was negative at that point but things had changed 5 months later.

nocam -
IGRT (Image Guided Radio Therapy) uses CT or other imaging to help direct the daily radiation to where the tumor IS now, not where it was. Not everyone has that - they did not have one where my husband was treated, so the doctors physically palpated his lymph node as a way of telling how the treatment was progressing.

That was how they judged Kevin's too. He had many lymph nodes that were swollen. Only 1 was tested, the assumption being more were involved. A week after the first chemo round with all 3 chemo meds the MO felt his neck and was amazed at how much the nodes had gone down. By the time they did the second round of same meds the nodes could not be felt anymore, anywhere. That was what encouraged us.
Nocam...I'm sorry you have not had a more positive experience. Not that there's much to be positive about, but the hope is that the docs would make it as clear as possible. Ours were amazing. We were told what was happening every step of the way. Of course doing the IMRT there was really no way of knowing how it was working, that is true. It is normal to wait until months later. Did they do chemo on you first, or with the IMRT?
Kathy

[quote=KP5]That was how they judged Kevin's too. He had many lymph nodes that were swollen. Only 1 was tested, the assumption being more were involved. A week after the first chemo round with all 3 chemo meds the MO felt his neck and was amazed at how much the nodes had gone down. By the time they did the second round of same meds the nodes could not be felt anymore, anywhere. That was what encouraged us.
Nocam...I'm sorry you have not had a more positive experience. Not that there's much to be positive about, but the hope is that the docs would make it as clear as possible. Ours were amazing. We were told what was happening every step of the way. Of course doing the IMRT there was really no way of knowing how it was working, that is true. It is normal to wait until months later. Did they do chemo on you first, or with the IMRT?
Kathy [/quote]

Thank very much for your comment. It help me to think about for my ideals.

Tks again and pls keep posting.

Nocam

Hmmn, sounds like maybe you did not have IMRT at all. Dr. Lee's video only applies to IMRT or 3Dconformal radiation. I note your signature line specifically uses XRT. That is an abbreviation for X ray radiation although some use it for external radiation but it's a catch all phrase. The acronyms are bewildering: 2DXRT, 3DCRT, IMRT, SBRT. So it sounds like you may have gotten one of the less advanced radiation TX, especially if they could not keep you appraised of tumor shrinkage.

This stuff is so technical that it's hard to explain in plain English to anyone without gross simplification. It took me a lot of research and reading of the articles and even then I need to bring in articles and ask my doctors what the heck they mean. A very good example is your repeated questions about rotating the tongue instead of a free flap. I was just as confused as you are now about this. Luckily for me, my plastic surgeon, Dr. Davidson is one of the pioneers of the tongue rotation technique and an acknowledged expert in functional reconstruction of the oral cavity.
Here is a link to one of his articles back in 2008 which explains the tongue rotation and even has the pictures that your doctor tried to sketch out for you.
Tongue rotation
I was so excited when I read this but in talking to Dr. Davidson, he explained that even though he uses tongue rotation, he also uses the flap. As the title of the article implies, rotation of the residual tongue is a "modification" of the flap surgery. It does not eliminate the need for a flap, but it's a different way of putting the tongue back together with the flap. So really it's not a question of choosing one or the other. Depending on the tumor, there is no way to avoid a flap in hemiglossectemoy reconstruction. So even though Dr. Davidson did rotate my tongue, he also put in a free flap from my wrist.

I note that you started posting here in July and still have not decided on TX. While I appreciate that you do not want complications or side effects or quality of life changes ins speech or swallowing, it's sort of a package deal with recurrence TX. If there is a way to avoid all these downsides, neither I nor any of my top notch doctors know about them. You learn to adjust to the new normal.

Charm

KPS

I had 3 sessions of chemo in conjunction with radiation. One session at the beginning, one midway and the last near or at the end.

Charm

Thanks for including the pdf link about tongue rotation for it was very informative. I guess there are lots of ways to do somewhat similar things. I spoke with the Doctor today about tongue rotation before reading your post. I ask him if tongue rotation was a new technique taking the place of flaps. He said tongue rotation was not new and that, as I understood it, he holds the flap approach in reserve and he may or may not use a flap in conjunction with tongue rotation.