OK, I have questions, someone please please, help. After posting on the intro forum, I got several responses. Now, I am thinking maybe I should see someone who deals with this thing all the time. I'm so confused.

I have questions though for all of you.

1. How do I choose a specialty center to go to? Just by location? By cancer type? By staging?

2. If I decide to go - how do I initiate it? Do I have to get a referral from my ENT? If so, what if he refuses?

3. If the ENT refuses to refer and I somehow still can be seen by them - how do I go about getting all my records to them? (I've not really needed much medical care in the past - just allergies and mild asthma - which only requires a 10-15 min visit -with my ENT coincidently each year).

4. How do you be confident in your decision. What if I get radiation and it still comes back? Then, what? And, if I don't get it - and it comes back - then I have to go through this all over again. It's just so hard to believe it is still happening.

5. What are the effects of radiation now? I can't be left with a dry mouth so dry that I have to carry water everywhere - b/c I work in a hospital lab and osha rules prohibit ANY food or drink in the work area. We have to go to a different room altogether to drink or eat and with the work flow you only get a dinner and a few quick breaks on the last half of the shift.....so, if left with a severe dry mouth like that - I might not be able to do my job. (I have to be on the phone a lot with the nurses - and right now, dry mouth and my speech don't mix too well - I'm sure it would be even worse then).

6. What about insurance? I have a Humana HMO which is very good if you are in network - but I'm not sure they cover anything if I go out of network. How would I deal with that? I can't possibly pay for treatments without that coverage.

7. Last question: My resection was on January 25th. Even if I get in to another treatment plan - it likely wouldn't start for another few weeks. Would it already be too late by then - or is there really a tight time frame?

Sorry for all the questions - but I am just baffled.

Amy, I read what you posted in the Introduction section and I think you shouold probably be more concerned about getting a second opinion at a CCC right now and not be worrying too much over the details of radiation, since it's possible they will agree you don't need it.

I'll try to answer some of your questions (since I'm up at 3 am with a bad cold might as well do someone some good!)

1. If I were you, I would go to the nearest comprehensive cancer center. The National Cancer Institute web site has a list of these. If there's a choice of two equally near, there are some rankings of them that you can refer to. These are on the web too but off the top of my head I can't recall where and don't have it bookmarked. Maybe someone else can help you there (it's quite possible there's a link from some page on this site if you look around).

2. When you decide which to go to, almost all of them have a patient phone number on their wesbite that you can call to set up an appointment. You don't need a referral from your doctor, although maybe for the purposes of your insurance covering it you will (you should call your insurance provider to find out). Some CCCs even have a web form you can fill out requesting an appointment and then they call you. It's really very easy.

3. When they speak to you, they'll tell you the records and other stuff (probably pathology slides)they need, whether you can bring them with you or if they need them ahead of time, and how to send them. You then need to go to the hospital and doctor's offices and request that those records/slides be sent. You need to sign forms for this, releasing the information. This happens all the time. There's no cost to you except the cost of some legwork. Allow a couple of days for them to do the sending, though sometimes if it's a matter of faxing something it can happen right away.

4. If the advice you're getting is from a CCC you can be confident it's good advice. My impression is there are some gray areas even so in terms of how aggressive you want to be with radiation in early sytage cancers(this is from my experience and the experience of others I've seen posting here in the year I've been here). In that case, it may be a tougher decision and I think it's important to ask yourself how you would feel if the worst-case consequence happens and you made the decision to radiate versus if you did not. But you may not have to make that kind of hard decision, the decision is likely to seem much clearer after you go to the CCC and get their advice.

6. There are people here who have had radiation and reported little to no severe drymouth only a short while after. I had IMRT radiation and I take salagen every day and, 8 months out, I actually don't get severe drymouth all that often except at night when I sleep (my mouth is always a little dry but I've gotten used to it). There are also sprays and other stuff you can use in your mouth that might not qualify as food or drink by OSHA standards. But everyone responds to radiation differently and it is possible you'll have some serious drymouth issues, at least at first,I don't want to sugar coat it.

I was concerned about doing my job too when I was first told I might need radiation (I'm a college teacher at a place with a fairly heavy teaching load and I LOVE the classroom). Fortunately, my workplace has been fantastic about giving me leave (and the union has banked sick days that they gave me after my nown ran out) and, now, allowing me to teach online and do some other stuff in lieu of classroom teaching. I still don't know if I'll ever be able to be in the classroom regularly several times a day again(I get hoarse when I talk for a length of time now) and if I can't it will be a great loss to me.

But it's way better than having recurrent cancer. Life is still sweet overall. Way too sweet to not have fought hard to get to keep it for a while. This is my thinking about these things anyway. Your job is important but it needs to be kept in perspective when you're talking about cancer.

6. Insurance questions I really can't answer except to say you should call them and ask them. If they give you a hard time about soemthing and you're at a large workplace where they're all buying into that plan, you may want to see if someone in your human resources department can call and argue with them for you. They might ahve more clout.

7. Another few weeks to start raidation would not be too late, although you don't want to delay more than absolutely necessary, and if you really need the treatment even late is better than never.

I know how scary and confusing this all can be, Amy. Keep asking questions here if you need to and, if you haven't already, look around the OCF site at all the other info. they have about second opinions, radiation,etc.

Nelie

OK. I've made up my mind to call the Ohio State Cancer Center in the morning. My question now, is how long do you usually wait for an appointment and how long does one take? I read on another post that a second opinion at MD Anderson takes 5 days. I had surgery on the 25th of January and it has already been a month since that date. Do I still have time to start radiation if that is what they recommend?

Amy, You still have time though it will be important, if they do say you need radiation, to get going as soon as possible (but it won't be overnight even so because it takes them time to set up a radiation plan).

For my second opinion, I sent ahead pathology slides, which were reviewed before I went there, and the consultation and examination itself took maybe 2-3 hours. It took an afternoon pretty much--and that included filling out all their paperwork. If I'm recalling right, it took two weeks to get the appointment from when I requested it, but it may have been that long a time because I actually had surgery here within that two week period, so that was the absolute soonest I *could* have gone for a second opinion as it turns out.

Other CCCs may operate a bit differently from MDAnderson. When Barry was diagnosed on June 21, 05 -- surgery done at a local hopital by his ENT -- the ENT called Hopkins that afternoon and got him an appointment for the 24th. We ended up going on the 27th, the doctor with whom we were to consult had an emergency. That was just as well, Barry felt pretty sh-tty after the tonsillectomy. After that initial consult, this doctor (a surgeon) presented Barry's case to the tumor board -- he also had us set up appointments for the next week with HNC medical and radiation oncologists. He called us back Thursday with tumor board recommendation, but we already had been prepped that it would be chemoradiation and no more (pre-treatment) surgery.

When we asked the Hopkins doctor about getting a second opinion, he recommended Sloan-Kettering in NYC, and a specific oncologist. We called this doctor's admin assistant on Wednesday and she called back Thursday with an appointment first thing Tuesday morning (Monday being a holiday, the 4th). Both CCCs wanted all the MRIs and CT scan plates, the surgical report, path report and also, the original slides. Actually for S-K the local hospital cut new slides as Hopkins still had the first set. We took the train up to NYC with plates, slides et al.

I was very impressed as to how quickly both CCCs operated and how seriously they took the situation re fitting these appointments into the doctors' already busy scedules.

But note -- although each individual consult took only 2-3 hours, the actual process was longer -- involving the tumor board, re-reading of slides by resident pathologists, examination of scans by their radiologists and final arrival at a treatment plan recommendation. This is probably why MDACC says 5-7 days for this all to take place. That is, from first consult to final appointments where you meet and have a treatment plan laid out for you.

After agreeing on a treatment plan (we had some decisions to make re chemo drug and also, whether to enter an offered trial) Barry had his initial simulation on July 18. In that time span he also met with a dental oncologst to be sure no work needed to be done on his teeth before radiation started. (He had none, but if had needed extensive work this might have delayed things.) They also took impressions for his fluoride trays.

A that point we went up to Maine for a week to kick back and relax before the "show" began. The only glitch was that Hopkins somehow lost (strayed ot stolen?) Barry's finished trays and he had to go in as soon as we got back to have another set made, asap.

He started treatment August 10, which was 7 weeks after diagnosis. They could have started him a week earlier if he had wanted, but no sooner than that (it takes two weeks for them to do the planning after initial simulation).

Gail

Wow - I called the CCC at Ohio State (Arthur G James Cancer Center) and they scheduled my appointment for this Thursday. I am really surprised how quick they got me in. I am not meeting with a whole team (at least to my knowledge). The nurse talked with the medical and radiation oncologist and right now - I am scheduled to meet with the radiation oncologist only. They will do a review of my pathology slides and determine if they think I need radiation. I guess chemo isn't really necesasry for treatment at my stage (I borderline II).

The radiation oncologist is definitely the one you most need to see. It's great they got you in so quickly. Let us know how it goes!

So- what do they typically do at a radiation oncologist consult appointment? They said to plan on 2 hours - but I don't think I'm meeting with anyone else. However, I could be wrong about that.

Amy,

When I met with my R.O. prior to treatment, she showed me around the facility, introduced me to all of the technicians and the other R.O.'s on staff. She also went over step by step the procedure and what to expect during the treatment. I had a series of photo's taken, kind of before and after I guess. I took my wife and parents with me and they had questions for her as well. The R.O. really spent a lot of time and answered anything we through at her. I would say that I was there for over two hours.

On my next visit, the tech's made the mask that I wore for the radiation treatments. This visit also was in the two hour range.

Good luck with your treatments,

John

When I went for my second opinion, there were all three sorts of folks there: ENT-surgeon, RO and MO. The ENT examined me pretty thoroughly, then most of the rest of the time was the discussion with the RO, who made a good case for why I needed radiation, talked about the most likely lasting effects of radiation, and about the difference between IMRT radiation and general field radiation. He also talked about the need for dental care beforehand, and possibly losing teeth, and why that was, and what other sorts of things I would need to do (fitting the mask) before radiaton started and how long that would take and how important it was to get started as soon as possible.

He didn't do much showing me around because the rad. facility wasn't in that building and I wasn't necessarilly planning on going there for rad.

Then the MO made the argument for concurrent chemo, which I was not prepared for at all, and which he admitted was an aggressive recommendation given current standards of treatment but he also made a good argument for why it would help (backed up by a conversation I later had with my MO here).

Now that I think about it, all this took at least three hours I think. Good luck with it all Amy!

Nelie