In about 10 days, we're talking with a team of oncologists. Radiation and Chemo.

We've been there before. 35 Radiation Sessions in 2011, which were sadly debilitating. We've dealt with local doctors and hospitals until this latest relapse - when we were referred to a major teaching hospital in Chicago. After the first hemiglossectomy, our local radiation oncologist told us hubby had already had a lifetime dose and was not a candidate for more. The local chemo guy told us this was not a cancer that would respond to chemo, so that was out as well.

Now, at the new hospital and with the new doctors, and following the 2nd hemiglossectomy (done there) - they want us to meet with their oncologists to "make some decisions". I will say, these new doctors are a world above what was available locally - the latest technology and the best trained doctors and nurses.

But we're frightened and don't understand. Are we to brace ourselves for having to choose how to die? From the cancer or from over-radiation? Good grief, it's hard to put this into words. But I've found this group now, and am forcing myself to reach out.

How on earth do you all deal with the fear of the unknown? Or are we blowing this all out of proportion?

Anytime we deal with the "unknown", it's very easy to think of the worst that can happen - but even the term "unknown" suggests that it could also mean something good. The good I see here is that you have a team approach which means several doctors get together and decide the best approach for the patient. There have been so many advances that can make a big difference in the getting the best care for your husband. Does your hospital have a website? You can find out lots of stuff there about all the doctors, what their experience is, their research and where they received their education. Which hospital are you with? (In case someone else here has had an experience there)
So have your questions ready (yours and your husband's) and bring a notepad to write down what the oncology team has to tell you. . . . if you don't understand something, be sure and say so or ask why. It's only 10 days away so try to keep busy. And find some moments to smile with your husband.

My husband had the initial 70 grays of radiation which is the lifetime maximum for the area that was irradiated. Since then he has had two more rounds of radiation, 20 grays each round, on some swollen nodes. So, it depends. Although as our RO told us, there will come a point when John cannot have more radiation without damage to the spine.

My husband has also had Cisplatin, Taxol and Carboplatin, Capcitabine and two clinical trials. So, I think, again it depends, your husband may be able to have some chemo -- maybe not for curative purposes but to keep him stable.

If you are going to a teaching hospital, maybe what you will be asked to consider is whether your husband will participate in clinical trials?

We have decided that we will take this a day at a time. That is the only way to deal with a recurrent cancer.

You are being very smart to reach out and ask questions. Im glad to see you have changed to one of the major hospitals (sounds like its a CCC).

There have been several members who have had radiation more than once. I even know a few who went thru it 3 times. This is all on a case by case basis with many variables. Usually the 2nd or 3rd rounds of rads its a lesser quantity so its slightly easier to get thru. Plus being experienced with this you already know the pitfalls and what to expect. If doing rads again, focus on what is within your control... intake. By pushing every single day to take in at least 2500 calories and 48-64 oz of water daily it will help minimize the awful side effects.

Lean on us and we will do our very best to steer you in the right direction. You are part of our online family Hang in there!

I'm so glad I posted here about our fears. Your responses are really easing the anxiety for us. Through you, I've been reminded that making decisions can be about things other than life and death, and the term "unknown" could actually lead to something good. I've learned that others have had more than one round of radiation, and lived to tell the story. And the calorie requirements have been firmly reinforced. Sometimes, he feels like it's just too much trouble - so I do need to keep on top of his intake.

The teaching hospital we're using is Rush University, in Chicago. It's not a CCC, but they do have an impressive clinic devoted to head and neck cancers alone. Everything is done as a team there - each recommendation goes to their Tumor Board before it's presented to us. It's a 2 hour drive (each way) from our home, but we deal with it. We were happy enough with our local care, but the ENT finally said he didn't feel qualified to take our case any further. He referred us to Rush, where he said he was trained by the best.

I don't think a CCC would take us, as our primary insurance is Medicare. Our backup insurance is great, but won't cover anything that Medicare doesn't. In any event, we're happy with the care at Rush. So far.

Thanks SO much for your input here. Each time I sit here to type, it gets a little easier.

I've had 7 recurrences in 4 years, including radiation 5x to the same area, which the last treatment ended 1/14, and so far all my scans have been clear since, so I know how these fears are, but had faith that each one was hopefully the last I had to do.

As far as being at a Comprehensive Cancer Center or Cancer Center, there is much confusion about that. Any hospital can call itself a CCC or CC since there are no requirements, restrictions or trademarks for its use, but NCI, NCCN, as well as others, do have criteria for their association or inclusion, which many may be referring too, but not all are associated, and many others are listed as top hospitals in listings like U.S. News Reports Best Hospitals. Rush University is ranked in the top 50 for cancer out of 5,000 hospitals, it's ENT program was highly ranked before, as I know since my first ENT at a top hospital did his residence there upon checking his background, and would consider it a CCC or CC for a simpler term.

Medicare probably do cover all hospitals, I've been to 9 for one thing or another, even those referred to as CCC, CC or associated with NCI or NCCN, but do know that some may only take Original Medicare, not Medicare Advantage, like MSKCC, as I learned, and one reason why I stayed with Original Medicare for more options.

Good luck with everything.

SEVEN recurrences over four years? Oh my, that's way more experience than anyone should have. I applaud you for your positive attitude, and pray it rubs off on me.

Yes, I am definitely confused about what may or may not be a CCC, or CC. I think of those as the special clinics advertised on TV, but it looks like that's not accurate. I can certainly see why the confusion exists.

I'm glad to hear Rush is among the top cancer hospitals in the country. We were SO impressed with everything there. From the state of the art equipment to the unbelievably attentive staffing, everything was amazing. We thought our local hospitals were great, but we didn't have anything to compare them to. Even though every appointment at Rush is a day-consuming drive for us, we know we're getting the best of care. We go back tomorrow, and the news is predicting riots because of the release of a police shooting video - so we certainly hope we're in a safe area. We're country folk and are easily overwhelmed by big city stuff.

As for Medicare - we do still have the original. We always knew we would want the freedom to choose our doctors, so we never changed. Plus, our back-up coverage is good, once the annual out-of-pocket is done.

If it helps, many cancer centers may have overnight housing available and or with The American Cancer Society, although I don't see any Hope Lodges in Illinois, they may have hotel rooms available though their program with Extended Stay America, which may be free like their Hope Lodges are, and can't say enough good things about.

http://www.cancer.org/treatment/supportprogramsservices/patientlodging/index

Here is information on Lodging and overnight stays with Rush University.

https://www.rush.edu/patients-visitors/visitors/lodging-and-overnight-stays

Thank you, Paul. I don't know very much, but doctor did tell us about the Bowman Guest Center there at Rush. I stayed 4 nights earlier this month, while hubby (he has a name, it's Jon) was an in-patient following surgery. It was wonderful - a part of their elevated walkway system, so I didn't have to go out on the streets at all. It wasn't free, but at $125 a night it was a real bargain. All the hotels in the area wanted between $250 and $350, plus I'd have had all the taxi fares. Never in a million years could I figure out Chicago's public transportation systems.

The Center was nice, especially since I'd have been happy with a bed and a shared bath. It was like an efficiency, with small kitchen area, table & sofa, and separate bedroom. I wasn't there much, but it was comfortable when I was. And I loved knowing I didn't have to sleep in a recliner in Jon's room. He needed to see me there, so going home was never in the equation.

Donna, Im not sure if you have been on the main OCF pages. But there is page after page of info that can be a great learning tool. Here is a link to places that may be able to offer financial assistance or other things to help make this easier. I dont know if any would help or not but its worth checking out. There could be something to help with lodging when traveling for treatments.


Main OCF pages---Financial Help

[quote=ChristineB]Donna, Im not sure if you have been on the main OCF pages. But there is page after page of info that can be a great learning tool. Here is a link to places that may be able to offer financial assistance or other things to help make this easier. I dont know if any would help or not but its worth checking out. There could be something to help with lodging when traveling for treatments.


Main OCF pages---Financial Help [/quote]

Thanks for pointing me to those resources, Christine. We've long since determined that this cancer is going to clean us out eventually, and try to leave the resources for people who have already reached that point. It makes no sense for us to use funds someone else needs more than we do. We'll reach that point soon enough, but are eternally grateful we can pay our own way for now.

As I continue to read the threads here, I realize how fortunate I am to have found this place. I have a much better idea of what to expect, and a comprehensive list of questions for the doctors. It was lonesome, facing this without someone who really knows what's going on. I find great comfort here.

Donna, when you are at the hospital, ask about what kind of support they have for caregivers. Don't overlook your own needs. There may be a support group or social worker they can hook you up with. I see a therapist and I have found that tremendously helpful.

So, we've had the dreaded appointments. Wednesday was the Oncology Team and we were pretty much left in limbo. I won't bore you with all the details, but the end result was no to both chemo and radiation. They said they just couldn't recommend putting him through all that when it wouldn't make much difference in the overall picture. We had a worrisome night, but forged ahead with the appointment with the surgeon the next morning.

That appointment was SO much better. He told us last year's tumor and this one were probably related. Even though last year's surgery (at our local clinic) indicated clean margins, and a subsequent biopsy looked clear - there were likely some microscopic cells that got away and formed this new tumor.

This surgeon, at Rush, took a more definitive approach. He not only took the tumor, but also took 1-1/2 cm margins around the tumor and around the old surgery spot. That's a huge margin, but he's positive he got all the cancer this time. He said, in all honesty it could come back next year. Or it could never come back. There's just no way to predict, so we'll remain under close observation.

With the immediate worry behind us now, we can focus on healing and rehab. Doctor says speech and swallow will probably never be really good, but the body learns to compensate. For now, hubby is still on thin purees - but the Rush Dietitian has given us some guidelines and goals. And their Speech Pathologist is working with us on the swallow. We'll worry about speech once we're no longer struggling with nourishment.

Gosh, we love the Team Approach at Rush. They do have a Social Worker for us, Gloria, and she calls every week to see how she can help. Amazing.

Anyhow, even though the immediate crisis seems to be behind us, I do intend to be an active member of this forum. There is just SO much to learn - and the viewpoints and resources here are priceless.

Donna -So glad your appointment was so much better. Sounds like your team at Rush is really awesome! Taking the extra margins around the tumor area is something my son's surgeon did. One of his interns told us that Paul's Surgeon was known to be very "aggressive" because he didn't want to see Paul back again. And that was almost 9 years ago! Paul does have some long term issues but that is better than another surgery. After the surgery, he told us that his tongue would spread out to fit the space it is in and it did! It's true - the body does compensate. And do stay with us. We all learn from each other's experiences.