Hi - new to posting (anywhere - I work at a computer all day, but never joined forums or "chatted").

Trying to educate myself quickly on chemo-radiation options before I meet with RO. Am in between walking around in a cloud, doing whatever I'm told and freaking out.

Just read through my post and it's looong. Sorry to be windy, but I'm stressing again. Am hoping for tips on how to choose an RO and info on chemo-rad options (induction vs. no induction).

Recently dx Stage 4 BOT + 1 node. Tonsillectomy 10-26 with open biopsies (tonsil was clean; tumor was pressing against it). ENT referred me to surgeon, whose associate at first said they'd operate, then radiate with chemo. A few minutes later, the surgeon I'd been referred to said it'd be 6-7 weeks of chemo-radiation, then I'd see them again. Still in a daze, and asked questions, but (unfortunately) hadn't been doing enough digging to know which questions to ask. ENT set up appt with local RO (I'm trying to learn abbreviations)for Monday at a local RO (just a few minutes from home, affiliated with hospital with cancer center minutes from home (almost all hospitals in my area are with the same group - monopoly or better collection of resources, it's a matter of opinion). Surgeon (1/2 hour away at the University of Cincinnati Barrett Cancer Ctr.) set me up with a University of Cincinnati RO Friday (I asked if it would be better to see an RO with the same center). I have no clue how to choose between the two (both, of course, are well-recommended). Any suggestions? I tried to see what technologies are offered at the two centers, but couldn't find enough info online.

Also, read a member's post saying that they did induction chemo followed by chemo and radiation because it greatly increases success rates. Any ideas on how this works, and why my surgeon said nothing about it?

I've been reading A LOT of posts on this site - even when I wasn't reaching out, it made me feel good to see the way you people are putting care out there to the people whose questions I followed.

Any light on the subject would be appreciated.

Be well, do good.

- Pam M

Hi Pam,
Unlike you, I happened upon this site when my husband was reaching the end of his treatment. Initially we were in a similar state of mind and researching treatment and hospitals seemed overwhelming. I think a lot of decision making in health care is based upon available resources and access to care. In our case, we chose a local cancer care center with experienced staff who came up with a treatment plan and were able to implement each aspect of treatment quickly and efficiently. It was a simple treatment plan (radiation and chemo) but there can be a lot of complications, Looking back, the most important part of the treatment plan was the ability of the team to coordinate the care and communicate with each other and most importantly, with us�an unusual experience given the number of specialties involved�from oncologists to pharmacists to nutritionists to the guy who delivered the cans of liquid nutrition

Cjack,

I feel lucky to have stumbled on this site before I went into my first RO appt clueless - sorry it wasn't the same for you.

Thanks for your reply - I'm amazed at how I'm not familiar with anyone in my area who's gone through this sort of thing (well, within the last 18 years or so).

Am I correct in thinking your husband's treatment began with radiation and chemo for 7 weeks, and the current round is chemo? Was this your original plan? The other posts I've seen looked like they started with Chemo alone, then moved to radiation with chemo. Is your cancer center part of a local hospital?

I have a KY hospital (Saint Elizabeth) with cancer center about seven minutes away from my home. The other RO I'm considering is at UC in Cincinnati, OH (about 25 minutes away). So far, my only game plan is to talk with both ROs and ask about available technology and recommended course(s) of treatment.

Regarding your treatment team ["an unusual experience given the number of specialties involved�from oncologists to pharmacists to nutritionists to the guy who delivered the cans of liquid nutrition"] - do you have a doctor co-ordinating all the movements? I feel like everything's very disjointed already, and I've only made appts with an ENT, Surgeon and two ROs. I'm hoping that I'll see more of a "team" approach like I see in cancer centers' websites.

Again, thanks cjack - my best to you and your husband.

Hi Pam,
I sounds like a good game plan to me.
In our case the Dr.s seemed to reach a consensus easily about the timing and length of treatment. Things moved very swiftly once treatment was initiated. Most of the treatment took place at a local hospital cancer center. The CO's nursing staff coordinated the other services which included a dietician and home health nurse. Our dentist worked with the RO. We used the same pharmacy to monitor possible drug interactions. Our choices were guided in part by insurance, location and a gut feeling.
I wish you well on this journey--it sounds like you're off to a good start already. Please keep us posted.
Pat

We used a Comprehensive Cancer Center. The Medical Oncologist (MO) is the team leader. He coordinated with the Radiation Oncologist (RO) and ENT surgeon to rather quickly come up with the treatment plan. The ENT enlisted a general surgeon to install the feeding tube (PEG). All three doctors shared all notes and test results, and coordinated their appointments so that someone was always checking Dana's progress. I would suggest that you take someone with you to appointments whenever possible to take notes. If you're alone and emotions take over the notes really come in handy! Also, if you go in with written questions, the doc will take you more seriously, and you won't forget to ask something because your emotions are taking over. We didn't find this site until Dana was almost done with his radiation. Count your blessings that you found it early on. There are many people here who can answer your questions, so ask away. I wish you the best on this journey.
Diane

Thanks to both of you ladies - I feel like I want to trap several of you in a room and bombard you with questions. I'll try to look up as much as I can on my own.

Once you met with a RO, how long 'til treatments started? I'm returning to work tomorrow (after RO appt) after two weeks off for tonsillectomy, and need to get my ducks in a row while I'm working.

A comprehensive center would have been my first choice, but it looks like that won't be an option for me (if I can't get to treatments, I can't take them).

Again, thank you - keep trooping

Hi Pam!

It took two weeks from Dana's first RO appointment until his first treatment. There are many calculations that need to be made to be sure the radiation is reaching the right area in the correct dose. Dana had had a previous neck reconstruction surgery with plates and screws in his neck and this was a challenge...how to get the proper radiation delivered without it being sheilded by the hardware in his neck. It took two dry runs before the RO was satisfied with everything. They will also have you come in to have a mask fitted. This is an open-weave plastic custom-fitted mask that will keep you in exactly the same position for each treatment. After reading several posts here, I would suggest taking a low dose xanax before donning the mask. Anything to make this more bearable, you know! Also, eat all of the foods you like and don't be afraid to gain a little weight. Dana lost 30 lbs. during his treatment. Your body will consume calories like crazy as it heals from the chemo and radiation, plus swallowing will become difficult toward the very end of radiation and for a couple of weeks after. Please ask any questions you think of. Everyone here will answer truthfully. The specific type of oral cancer might be different, but the initial treatment seems to be pretty much the same. Come here often for support!
Diane

Pam,

I used this site constantly during my treatment and let my team at the CCC know it. I always had questions on our team day (every Thursday) and days in between with individual nurses and Doctors. Most of those questions originated at this site.

I chose to travel to a CCC 1 hours drive from my house even though there was an option closer. I wanted the CCC approach. I was also on Ethyol so I had to add an hour to treatment time. This really screwed up my work schedule and I had to put in extra hours at home at night but it was worth it. My wife went to every meeting and took notes and then made sure I could get every opportunity I could for rest.

I have a 12 year old son and made sure I kept as close to our regular schedule as I could. I scheduled my treatments so I could drop him at school on the way and made all the Boy Scout meetings and even showed up at some of his camping events (didn�t stay over night).

I had some mouth pain from ulcers but never had to get a PEG. I was back to 6 hours of work a day a week out of treatment, and am now back to 8 hours three weeks out (I still sleep a lot). I am working my way past soft foods slowly. My Saliva is lower then previous but not gone and I can eat some bread with water (had a small burger the other day). My taste left me but I am slowly getting some of it back.

I�m not one of those who �Breezed Through� but I did very well and consider myself very lucky so far.

This is not easy by any stretch of the imagination, but you may find that it is not as hard as your imagination may lead you to think.

Keep your chin up and best of luck.

Kelly

Kelly,

I'm glad to hear you were spared some of the horrors many of the other posters had to go through, even if it was still anything but a walk in the park. Here's hoping your follow-ups are clear. Hearing your experience gives me something to shoot for - thank you for letting me know how a tiny bit about what you've gone through. I am glad to hear that you don't seem to have suffered as much as most others. Assuming having a 12 year old to tend to and a supportive wife helped, too.

OK - just looked up Ethyol. So it was given in hopes of protecing your salivary glands, and it sounds like it did help you - great. I've read that you may recover more, that'd be wonderful. I've been reading (and agonizing over) several posters' descriptions of the pain of inadequate or non-existent saliva production.

So, were you able to eat at least soft foods throughout, or did you need to resort to liquids?

I really was pleased to hear from someone who has fared relatively well through treatment. My son is older, and I was afraid that I'd have to ask him to move back in with me for most of the treatment period (he has a live-in, college, and work, so it would be a hardship for him). Your post helps me think I've got a shot at self-sufficiency.

Thanks - my best to you and yours - do well.

Diane,

It really helps me keep my head, getting pearls of wisdom from those who've gone before.

Thanks for the xanax advice - I've never taken it before, but have to agree that it sounds like a good idea.

I, too, had a right tonsillectomy - it was clear, but my tumor was touching it, so it came out when I got biopsied.

I just did some looking, and read that your husband's PEG tube came out at one point. That must have been terrifying! I'm not really sure what they're like (one person I read somewhere likened it to a button on his stomach with a tube coming out). When did Dana use it - the entire time, or beginning at a certain point? It looks like he had it in for 8 months. Did it take that long for treatments to complete, then his throat to clear enough to eat?

Appreciate everything,

- P