David,

The scariest part is that the oncologists are so specialized and so compartmentalized in their specialties that even they seem to know next to nothing about each others specialties. This is not a time when I'm happy about being on the bleeding edge.

My brother had the TORS done with the hope of having reduced radiation on the back end. This was absolutely outside the protocol at MD Anderson where they were recommending all radiation and chemo but his surgeon was able to prevail at the tumor board and that�s the way they went.
They were closing him up when the surgeon noticed a small stringer of material that turned out to be additional cancer that did not show up on the scans.
They had hoped to do 55 Gy. Of radiation after the surgery but after noticing the small stringer, they ended up doing the whole 70 Gy. That the rest of us have had. The tumor was just above the voice box about grape size.

Thanks for the info, Kelly. Hindsight. If only we had crystal balls to predict our outcomes! Is he regretful that had the TORS or simply disappointed that it wasn't enough (not that it matters much in the end, I suppose)? Sometimes it is best to go contrary to the standard but oh so hard to know when. I also tend to be cursed with overthinking everything.

Wow, you and your brother both had head and neck cancers? Is there other family history for this? I was surprised my tumor is HPV+ because my grandmother died from oral cancer plus I was a heavy smoker for a lot of years.

My first cousin had a tumor in the same place my brother did but I have 8 other siblings with no problems at all.

When I was diagnosed with the recurrance I was talking with my brother and he said his throat was bothering him just a bit. I told him that I would hound him every day until he got it checked out. Thats when he found out he had cancer.

Good thing we have a big family as they were working double time going back and forth between Texas and Michigan helping us both out. I started treatment first with my brother following by a month.

Karen, I haven't gone through the surgery yet (it's on Thursday), but my doc (one of the best around) advocates the surgery as a necessity. My personal view is that I want them to do everything possible to kick this bitch to the curb so it doesn't come back, and he is of the same view, so surgery first, then the the chemo/rad to kill off the stragglers.

Not sure if that helps as I haven't been through it yet, but for what it's worth, that's my view.

All my best to you!

Karen, all I can do is give you our experience. My husband got 3 opinions:

1. Mayo Clinic; surgery then chemo and radiation (this from the ENT/surgeon)

2. MD Anderson: first plan, surgery, then chemo. second plan, chemo then surgery, then radiation

3. University of Chicago: chemo then chemoradiation. Surgery only as a salvage procedure.

It was very interesting, every other patient we saw at Mayo had obviously had major surgery, giving us the impression that hospital leaned more towards surgical solutions. We did not care for the rad onc at MDA (at all!) and their vacilating plans made us uneasy. We went with U of C because their plan made the most sense to us as my husband's cancer was HPV+ and responds very well to this kind of treatment. Best of luck in your decision, I know it's not at all easy. Ana

Thanks for all the input! Based on both empirical and anecdotal data, I'm pretty much convinced that chemoradiotherapy is the best first line treatment for most HPV+ cases. Nonetheless, in my case, I've decided to proceed with the surgery. I spoke at length with my RO who is also the head of my multidisciplinary team at Johns Hopkins. They're concerned about the potential for a combo of radiation and chemo having a negative impact on my MDS (possible relapse) or my graft versus host disease (possible exacerbation). Thus, they hope to avoid chemo altogether. They'll make a recommendation about radiation after the status of my lymph nodes is confirmed. If deemed advisable, they still hope to use a slightly reduced dose. I'm already at high risk for MDS relapse because I had multiple complex chromosome abnormalities and all three cell lines affected. I guess I'll also be at higher risk for scc recurrence without the chemo. It feels like I'm walking a tightrope here! Unfortunately, there's a lot of guesswork involved due to the rarity of this combination of factors. I'm wearing my lab rat t-shirt I got at NIH last year when I volunteered for their graft vs. host disease study. I never dreamed that my rat career would grow more extensive.

Karen,

My first go around with this disease was treated with radiation only (no chemo). That was to my primary site in the soft palet. That cancer never returned. My recurrence was in a lymph node in my neck. I'll have to assume that a few cells got away from the primary and the radiation they did give me to the neck missed them or was ineffective.

Anyhow; although we spend a great deal of time on these boards discussing the different chemo options, effects, and effectiveness and so on, chemo is only a small part of the equation. It�s the radiation and surgery that carries the big load on killing the cancer, chemo only weakens it and not by that much. I have heard we can get up to a 10% boost to our survivability rate over 5 years with the addition of chemo, but my MO said he only figures in 5% given all the variable studies he has seen. I was never that worried about the chemo side of things as I wanted to make sure I was choosing the right BIG GUN to kill the cancer radiation wise. I have done both IMRT and Cyberknife. I would spend more time with your doctors discussing the radiation methodologies than worrying about chemo. There are a number of different options on the radiation side you can look at and I would make sure your team has considered all of them.

I found that some institutions will not consider different radiation options because they do not have the equipment on site. I was at University of Michigan and after the IMRT treatments left some residual cancer they called the game. They had me in for my palliative chemo meeting where they effectively were telling me I only had a short time left to live and the chemo would give me an extra few months. Two weeks later I was getting cyberknife treatments at the University of Pittsburgh. I finished that up with a clear scan a few months ago and will go back for my 6 month PET at the end of this month (just about the time U of M said I would be getting close to dying). U of M did not have Cyberkife technology in house.

Kelly,

I truly hope you keep telling this story, not to give false hopes to people who can't be cured but to spur those on who need to advocate for themselves and seek other opinions before throwing in the towel.

I think I speak for all of us here that we are elated that you are still here with us and we are rooting for that clear "Halloween" scan.

Deb

Kelly,

Everything Deb said and more! Thank you for the excellent suggestions and ideas.

Karen