Last week he was diagnosed with SCC stage 4, BOT. Apparently there's quite a large tumor there which has spread to, I think, 2 lymph nodes. I just got this from him which I'll copy in verbatim (though with some corrected spelling):

"I have just received the PET scan which shows a large hypermetabolic right tongue mass extending into the right tonsillar pillar 3 cm in diameter w maximal SUV of 14 AND an enlarged 4.8 cm right level III lymph node w maximal SUV of 11.5 AND a 1,5 hypermetabolic level II lymph node w maximal SUV of 11.1."

He's told me that his doctors have suggested a 9 week, 3 cycle course of chemo (didn't say what kind) followed by "3 weeks" of RT (again, total days or Gy not specified as yet).

Although I've read plenty of posts by people with BOT masses, I don't have personal experience with this and would welcome any guidance from those more knowledgeable.

I've recommended that my friend come on here, but he's not accustomed to online forums so may be reluctant. He's being treated at Baptist Hospital in Miami by a whole raft of docs - I think he mentioned 6. I know that the University of Miami is a CCC, as does he, and he may go there for a second opinion.

Any advice greatly appreciated. This person has never been a smoker and I believe is only a casual drinker. Don't know if he's been tested for HPV but I've recommended it. I'll follow up with anything additional he tells me.

Many thanks, everyone.
David 2

Well, gettin to a CCC is important imho, I think the best advice for anyone having to go through this is to get the absolute best medical advice available to you. It just gives you the best chance of surviving especially late stage as tongue cancers seem to be so aggressive.

Most tx regiment I've read about is chemo/rads concurrently and surgery beforehand unless the tumor(s) are too large and then surgery comes afterward, which was my experience so they could shrink the tumors.

Tell your friend good luck and keep his chin up
Eric

David

While he has very many issues to resolve, you would be doing him a big favor by making sure he gets a blood test for his TSH level now, before any TX. He should demand a copy of the test with the actual numbers and not just accept being told "it's normal".
As far as testing for HPV, that can be done on the section of the tumor that was biopsed. (my CCC flatly refused to do any TX despite the CT and PETscans without a biopsy and a pathology report so I assume he's had one). If I were him, I would insist on it being tested even if the doctors protested that it would not change TX, - my personal experience was one of relief that now I had something to "blame" my cancer on.
My understanding is that chemo and radiation are the standard TX for large BOT tumors without surgery since the results of surgery are so drastic for BOT tumor removal. A second opinion from a CCC is indeed a good idea especially since studies I saw indicated that a concurrent chemo and RT is more effective than doing chemo first and then RT. But I'm not a doctor but that discrepancy would motivate me to have a CCC also on board with it.

Charm

Charm - marvelous advice and thanks for addressing this so quickly. I'll pass your comments on to him immmediately.

And thanks to you too, Eric - just seeing your post now.

David 2

My friend writes that he's thinking of going

"to the Univ of Penn where I have heard Dr Bert O'Malley is doing robotic ENT surgery, which seems like a good alternative. Have you heard of him or of the advisability of robotic surgery?"

Anyone with any experience there?

thx.
d2

David, I don't know much about the robotics, but I went Dr. Richatd Wein at Tufts in Boston. He was refered to me by a dentist friend. He has written countless articles and given many many speaches on neck surgery. I really fealt like I was in the best possible hands with him. This guy really knows what he's doing. I couldn't find a single stitch in my neck as they were all on the inside and my scar is about as wide as a toothpick. Your friends procedure may only be possible with the robotics but if it can be done by a Dr. ...Wein is your guy. Will

Thanks, Will. I'll pass your good advice along to him. My guess is that he'll likely stay in Miami with his family, but I want him to have all the information possible. Tomorrow he's meeting with some docs at the U of Miami, which is a CCC, for a second opinion.

David 2

How do I know if Mass General is a CCC? I wanted to go to Mayo in Jacksonville but Blue Cross said it was out of network.

Will,

Mass General is not a CCC but it has an excellent Head & Neck Cancer program.

http://www.massgeneral.org/cancer/team/hn.aspx

Dr. Wirth who was my Medical Oncologist during treatment at Dana-Farber, is now the Medical Director at Mass General. Loved her to pieces!

- Margaret

Mass General is indeed a CCC -- a comprehensive cancer center, meaning that it uses a team approach to dealing with an individual case, bringing the knowledge and experience from a variety of specialties to each treatment plan. (In other words, it takes a "comprehensive" approach to treatment.)

What MGH isn't is a National Cancer Institute-designated comprehensive cancer center. Institutions choose to apply to the NCI for that designation, which involves a peer-review process and a lot of paperwork. The NCI provides funding for research, and the terms "NCI-designated comprehensive cancer center" and "NCI-designated cancer center" are indications of research interests, not the quality or scope of patient care.

The NCI defines "comprehensive cancer center" differently from how the term is usually used on this message board (for that, see the first paragraph of this post). NCI designation of a facility as a "comprehensive cancer center" means that the institution is involved in three types of research: laboratory, clinical and population-based. All NCI-designated comprehensive cancer centers also treat patients. An NCI-designated "cancer center" concentrates research in one or two of those areas, and a few of these facilities -- like the Wistar Institute in Philadelphia, the Koch Institute at MIT in Cambridge, Mass., or the Salk Institute in San Diego -- do research only. Further information is available here: http://cancercenters.cancer.gov/documents/CCSG_Guidelines.pdf (see page 7 for the NCI's definitions).

According to the most recent USNews rankings, Mass General is #7 on the list of best hospitals for cancer treatment -- higher than most of the institutions that are NCI-designated CCCs or CCs. So you would certainly be in good hands there.

Thanks for the clarification, Leslie!

- Margaret

The use of the DaVinci robot to do these surgeries is very early in its use, and is primarily being looked at as a means to do surgery without cutting through the front of the mandible and slitting the lip. These are things that for him doing chemo and rads first would likely not be on his plate anyway.

There are only a few people that have done more than a couple of the robot assisted surgeries, so given its newness it will be hard to find "the guy" that has a bunch of them under his belt. That would give me pause.

Thank you, Brian. My friend has told me that he's in the process of signing up here, so I'm sure he'll be saying hello in time.

In the meantime I've passed along your thoughts on the DaVinci to him via email.

David2