You're welcome, Mary. Sorry you (and your hubby) have to go through this, but it is what it is, life. In all it's glory.

Best of luck to you and him!

What, me worry?

Bart E. Neuman

Hi--I just wanted to update on this topic I started in May. It's been a whirlwind couple of months. (background: after getting news of metastatic spread to lymph node(s) of lungs, we were advised to wait 8 weeks, do another PET, and see how this thing behaves. No cure; only treatment) My husband had the 8-week followup PET scan June 19. The good news is that one of two bright spots is fading (subcarinal lymph node of lung), which seems to confirm biopsy result that that one is negative. However, the Hilar lymph node is still bright (SUV 3.3 in April increased to 3.8 in June), (and of course had been biopsied positive for malignancy in April). We have received 3 second opinions these last two months as well. The Hopkins MO feels this is a very slow growing thing; she wants to consider radiation with "Chemo light" to the area--trying for cure, not just treatment. We meet with Hopkins RO next week. They have treated 4 cases in this manner at Hopkins; 3 are currently in treatment, and the 4th has been NED for 6 months. This is a bit of an out-of-the-box approach that seems to be based on the following facts:
1. only one met (had subcarinal node been involved, chances were slimmer that they would try this)
2. metastasis apparently only in lymph system (not in blood) (as demonstrated by clear CT scan)
3. met is very small (under 1 cm)
4. I am not sure if HPV + plays into it.

So we have followup meetings with 2 of the 3 second opinion practices next week.

Best to all,
Mary

Good luck and do keep us posted.

Hopkins sounds like a good prospect so glad the news isn't as grim as you thought at first.. Fingers crossed for a cure. Hugs!

Best of outcomes! In situations like this, a a CCC known for cancer is the place to be. Sometimes I feel the "got to CCC" is a bit overdone in that a majority of the common HPV+ OC we see here can be treated by competent non CCC providers. Just my own opinion as one who got excellent service throughout outside a CCC system.

I think similar Don. I have local doctors, and ones at the top CCC hospitals in Manhattan. If I stuck with my local oncologist initially, as planned, I would probably be cured by now. Major CCC can be too aggressive, and was warned of this. It probably works in most cases, but not all, like myself. For complicated cases, a CCC is probably better.

Thanks for the well-wishes. Had appt with RO this past week. We were told that 10 years ago, this situation would have presented a whole different story re: treatment. HPV has changed all that, so to correct my explanation above, HPV obviously is playing a part in decision to zap this thing with radiation. Planning scan (simulation) next week. Paul and Don, to follow on what you said, we had amazingly excellent care at a non-CCC facility for the initial round of treatment (back when it was a slam dunk 80%-90% cure). If it weren't for this unexpected turn of events, there would not now be this need to move to a CCC that has seen many more such cases.
Best to all,
Mary

Just to put it on the record now that three of you have posted this. OCF's position is that patients should find the best institution, with the highest independently established ratings to be treated at. This is historically large NCI designated CCC's, that have greatest access to clinical trials, doctors that see far more patients with a particular disease than those in a regional hospital, and have funding for the most modern equipment, and so on. (Full disclosure on how hospitals are rated can be found on the US New and World Report Hospital rating criteria) There is peer reviewed published work (story in the OCF news feed) which has looked at the outcomes from these institutions compared to smaller regional hospitals, and those peer reviewed studies show superior outcomes from the bigger CCC's. This does not mean that there are not good doctors at smaller institutions, so do not misinterpret this. This is based on clinical outcomes, looked at through a scientific, non subjective process.

I could not be more pleased that the three of you had great outcomes, as many people who go to smaller institutions do. But when the crap hits the fan, and your disease takes an unexpected negative turn, I would like to be with a team that has seen that unexpected event hundreds if not thousands of times vs. just a few. I would like to have access to clinical trial drugs that are not available at smaller institutions. All that said, the bulk of people in the US do not have the luxury of getting to choose what their HMO, insurance region and carrier, or personal finance dictates. That is the reality. So, IF, IF, someone has the ability to go to an institution with a higher clinical outcome rating, and the assets to make that possible, OCF will always recommend that patients go to one.

[quote]All that said, the bulk of people in the US do not have the luxury of getting to choose what their HMO, insurance region and carrier, or personal finance dictates. That is the reality. So, IF, IF, someone has the ability to go to an institution with a higher clinical outcome rating, and the assets to make that possible, OCF will always recommend that patients go to one.[/quote]The reason I wanted to express my satisfaction with the non-CCC options is exactly your point. There are many insured under plans with limited options and CCC may not be an option. Many are under-insured and even uninsured - pushing for a CCC only adds stress and feeling inadequate and worse that will be under-treated or receive substandard car via other options.

This is NOT the case. Most, if not all, medical professionals and institutions in the USA follow standard of care guidelines. So, you will receive adequate care for all things "standard".

Even if you have access to a CCC via out-of-network options under your coverage, the financial costs can overly burden ones financial abilities. Some here are quite emphatic about going to a CCC, to the degree, one should be willing to go bankrupt to afford out of pocket CCC cost. I offer that one can get just as solid outcomes via non-CCC if you keep your eyes open and nose sharp.

In my case, having the run of the mill scc stg4 HPV+ with known BOT primary, it seemed fairly pedestrian for the typical ENT,MO,RO, etc. Even though my team was not under the same roof, it was a team and my case went through a tumor board just the same as a CCC. My request to attend was granted and it was very impressive to sit around a table of 15 professional, doctors and other med. pros, all fixated on my MO presenting my case and reviewing and discussing the finer points of the reports and diagnosis, etc.

My surgeon ENT did his fellowship at Memorial Sloan-Kettering Cancer Institute. My RO is individually recognized in the latest US News ratings. The facility where I received services is recognized by US News, just not a CCC and rated one notch lower mostly due to not being a teaching/research facility; vital if you have something unusual or where standard of care does not seem appropriate. My MO is the least experienced but very passionate about healing me and I know he did a lot of extra research just to ensure he was on solid footing. I am trilled with them all.

I'm just offering out to those that you can get great care and outcomes via non-CCC and as Brian states the reality in today's health insurance market puts CCC alternatives out of reach for many but that does not doom one to a death sentence. don

I'm not sure why we are having this discussion. Everything being said is a forgone conclusion. Go to the best place you can based on insurance, HMO and personal ability.

All things in the US are not equal, and some do not meet and treat to standards. In all things there is a bell curve, some great, some horrible, and the bulk in the middle. As to saying that any cancer is a run of the mill thing, I personally think that is a mistake. No one knows enough about it all when they get diagnosed to make that decision. No one knows if in their particular case something catastrophic is going to change in the middle of treatment. No one knows if they are someone that is going to be unresponsive to conventional established treatments and need something outside the box that may only be available in a clinical trial center. There are a lot of "no one knows" when you are a non medical person who just got a cancer diagnosis.

I don't think anyone here has beliefs that are outside all this until I read that someone thought that a CCC might "over treat a patient" That comment needed correction. More than that we all agree. We are all locked into certain choices given our services that we can afford, or systems we are in. That is the reality of the situation and in the US that is not going to change.