I had an appt. with my ENT a couple of days ago and instead of scheduling another appt. for a month from now, he said to make the next appt. in two months. I was a little surprised by that as I had thought he had said he would see me every month for the first 6 months but I'm also seeing my RO for followups and have another appt. with him in 3 weeks so I figure between the two I am getting seen every month.

My question is, what should I expect my ENT to be doing to do a really thorough check for cancer at these visits and when should I expect he will start doing these things? I am just three weeks past the end of radiation (in my 4th post-rad week) and still am struggling with phelgm and mouth sores from mucositis.

I'm more scared I suppose by reading elsewhere of someone having a possible recurrence only 8 weeks out of rad. At my appointment, my ENT noted I had two patches in my mouth, one below my tongue near where the original tumor was and one above my throat that are red and irritated looking but that he "didn't see anything that looks like cancer".

I assume the red patch above my throat is mainly remianing irritated because I have been vomiting almost every day since rad treatment began either from chemo, amifostine or (lately) phlegm that gets caught in my thorat and makes me gag). As for the lower tongue, I thought that was raw because it was the focus of the radiation. The RO hasn't made any comments about it looking unusually irritated. But I couldn't tell if the ENT thought these might be patches of dysplasia that needed to be watched or why else he would have made that comment. He didn't seem to think any action on anything was needed at the moment.

I mentioned to him I was scared of a recurrence and he said "well you should be. you had a very aggressive form of cancer". but didn't explain to me what he'd do to try to catch a recurrence. Not very reassuring. (His bedside manner is not the best many times)

Anyway, he did an visual exam of my mouth and felt my neck but didn't look down my throat with a scope. He has actually never scoped me in an office visit, only when I've been in surgery. Shouldn't that be part of a follow-up exam in the future? I know that in September he wants to do a PET scan or MRI to get a baseline and that he has mentioned he'll run checks on my thyroid every now and then but I'm not clear on how important the scoping part is.

He is not an ENT specializing in head and neck cancer, although I know he has treated other cancer patients in the area. He's a good surgeon and seems to know his stuff about oral cancer in general. He's the one who suggested I get a second opinion when the first RO at the hosptial said I didn't need radiation and the reasons he gave for why he thought I DID need rad were right on the money--the same as what the specialists at Dana Farber ended up saying--so i trust his knowledge. But much of his business is kids who need ear tubes. I'm just concerned that i get a really thorough and good follow-up exam from him and that he's doing everything that needs to be done to do a really thorough check for possible recurrences.

I too have been wondering alot about followup visits and I intend to ask tomorrow, as I have appointments with both my chemo onco and radiation onco. Basically, I'd like to know what the plan is for followup care for the next year...like when I can expect to be scheduled for scans and exams, so I can plan my life accordingly.

On the other hand, when the appointments for seeing the doctors get spaced far apart after treatment is over (and during treatment, it's like you are overwhelmed with doctors appointments) it feels like everybody suddenly abandoned ship leaving you the only one on board.

Anyway, in my case, I'm being treated at a major cancer center so I never see my ENT treating kids needing ear tubes. However, I'm not clear as to why I need to continue to see the chemo oncologist when I'm going on my fourth month post chemo. (Except that I know my ENT refuses to write most prescriptions because SHE (the chemo onco) prefers to do it. Some of this stuff gets pretty confusing.

Basically, when I go into the chemo oncologists office, I have to wait close to an hour to simply have her listen to my lungs, my chest and poke underneath my armpits. I know I'm up for yet another bloodtest so I'm hoping to have it done in one stop at the first appointment. SO if they are going to draw blood, I'm going to need to inform them to be sure to get enough for the radiation departments needs all with the same poke.

Hopefully, some of my questions will get answered tomorrow. If any of them do pan out useful information, I'll come back and post. ha ha ha.

Jen

Yes, I'd be very interested in knowing what they say. I keep thinking of I were at a major CCC, my docs would coordinate things more. Maybe I'm worng about that.

Oddly, I hardly ever saw my medical oncologist all through the concurrent chemo/rad treatment. In part becuase he IS a well-trained oncologist (worked at sloan-kettering before moving here) and is in high demand by everyone in the area. He has a nurse-practitioner/oncology nurse who is second in command and really knows her stuff and she was who I saw for checkups during my chemo. But then after treatment ended when I had a high fever while I was neutropenic and ended up in the hosptial the med oncologist was great about coming by every day and keeping me informed.

So I felt like he was kind of my main doc for a couple of weeks there. Now I'm not sure WHO is. Except I know I can't count on the RO because he's from Roswell Park and only here 3 days a week and there's no way to get through to him whne the office isn't open.

The medical oncologist has been the one who has done most of the prescribing, esp. of pain meds, which is fine with me but I wonder when/if that switches over to the ENT. It seems like once my bloodwork looks normal again, it should switch to someonme else. It's all very confusing.

But what really concerns me is the ENT is clearly the one best qualified to look in my mouth and down my throat and say if it looks like anything is a recurrence and I want to be sure he does what needs to be done thoroughly!

I understand your confusion. I'm at a "cancer center" and there's no official guidebook or coordinator. A friend of mine who's a nurse, asked me if there was such a thing as a patient advocate or "case manager" that helps keep track of where you need to go and when. No such thing where I'm at and every department is different.

They sold me on the "team approach" and sometimes I do have to wonder if all the team members are informed sometimes. I know my file is inches thick by now, but sometimes it's like they duplicate the same questions and the same tests.

Now when I was engulfed in treatment, I never thought about asking for the complete game plan, but tomorrow when I go in there, I'm hoping one of the two doctors will tell me what the followup treatment and schedule will be.

Like you, I'm always worried about recurrance etc. and want to be on the constant lookout for cancer, BUT on the other hand, it sure would be nice to make plans to enjoy some life again.

Jen

"it sure would be nice to make plans to enjoy some life again."

I hear you. Unfortunately, I seem to be still fighting the same stuff I was fighting the last week of rad in terms of symptoms. Phelgm attacks don't lead one to want to go out and be in public a lot and I'm still totally dependdent on the PEG. I tried eating a little yogurt today and it stung horribly. So I'm feeling like I want to make sure someone knows they are repsonsible for getting me BACK to normal life first.

Nelie, really, I have always been somewhat jaded by the whole "medical world" anyway. I never got a sense there'd be much hand holding, and sometimes for this being a science, I wish that I would get more accurate answers.

Not one of the members of my medical team has pushed me to get off the PEG, but slowly and surely, my appetite is coming back and I make it a point to eat even if I'm not hungry. I've become a big fan of those buffet places that I can pick and choose what might work for me foodwise and they always have a soft serve ice cream machine that I make it a point to get several helpings of.

However, I am going to ask tomorrow about the followup plans. It would be so nice if there was a guidebook. Heck, I'm finding anymore that some of the most valuable information I get is right here on this particular forum. It definitely helps me ask better questions and at least understand the stuff.

To tell you the absolute truth, when they draw blood... I have NO clue as to what they are doing in the way of blood tests. Isn't that goofy? I've been getting my blood drawn all the time and I'm just clueless.

Jen

There are actually specific NCCN oncology practice guidelines for followup exams and other scans, etc. See:
http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

The first year the Head&Neck Surgeon or ENT will become the primary physician and will see you the most often. The oncologist (who was the primaty during treatment) and radiation oncologist will track you fairly closely as long as you are having side effects from the treatment. I am just year 3 and I now see the H&N Surgeon every 4 months, the other docs every 6 mos. I have been scoped twice post Tx and that was after I had recovered a little bit. I have had 2 MRI's post Tx and now get an annual one as well as a chest x-ray.

I have lab work done every 6 months to coincide with the oncologist visit. They test for liver function (this might be just because I have Hep C as well), CBC, and TSH levels (in the beginning of post Tx they also tested kidney function). I also had 3 hearing tests because I was treated with Cisplatin. Since chemo can damage kidneys, liver, bone marrow and radiation can damage the thyroid there is a lot of blood chemistry to watch (and it is very difficult to make sense of the numbers). The further you get from Tx the less lab work will be required.

The physical exam is mainly look-see with special mirrors and palpation (initially inside the mouth but now more external, looking for enlarged lymph nodes etc.

It is normal to see all kinds of things in early post Tx and the doctors dutifully record it. The majority of the time it's either just the normal healing process or maybe thrush. Don't let these kinds of comments shake you up. I even had lousy MRI's in the beginning because of the scar tissue.

By the way, MRI's are the scan of choice for H&N cancer and there is no radiation involved which is a good thing. Some folks here get PET or PET/CT's as well.

Since we are all different doctors may utilize different followup protocols. Many other factors enter into this as well such as staging, tumor type, location, etc.

I just hit my two year mark since my surgery (radiation 2 year mark July 10th) and I only see my ENT. I see him every 2-2 1/2 months. My radiation techs were awesome but the doctor himself was kind of a bore. He never seemed real interested in me and I had NO interest in him. I went for one follow up visit and I never heard from them again! My ENT handles all my care. I have my thyroid function tests and have had 3 chest xrays. No scans. He does a very, very through and hands on exam each time I see him. Mirror down the throat, all that fun stuff. He spends at least 15 minutes on the exam and 10 minutes talking with me. Everyone should have this type of doctor, he's wonderful.
I had many, many things that went on in my mouth right after radiation ended. It gave me many, many sleepless nights and anxiety filled days. Brian warned me that there would be many things that would pop up in my mouth after radiation and he was correct. I had red patches, I had literal open lesions and sores on my toungue after the mucocitis had cleared up. One sore stayed there for over 4 months. My doc would always tell me he didn't believe it was cancer but the lesion he biopsied to be extra careful. Two years later I continue to get sores in my mouth and on my tongue. I'm battling one right now on my tongue that is finally resolving and healing.
The fear of cancer coming back is a horrible thing to deal with. It's so much worse right after treatment ends but it does get better. You will get to a point where you still think about cancer every day but it doesn't rule your thoughts.
Take care,
Minnie

One of the problems I had in the first couple of years after treatment was that some of the strange pains and sensations I felt were apparently the result of nerves regenerating after long periods of numbness. It was hard to sort out the things that should really concern me vs. the ones that were just the interim stages of healing.

Also, I occasionally still find something new on my tongue or in my gums that looks like it shouldn't be there. My oncologist and oral surgeon are always good about seeing me on very short notice if that happens. Just a couple of months ago there was a new spot on my gum that was causing some problems and wouldn't go away. After ruling out several possibilities, my oral surgeon biopsied it and (thankfully) it turned out to be benign.

For routine followup purposes, my oncologist has been my primary care doctor ever since I finished treatment. He coordinates any followups that might be necessary with any other specialists (even those that are unrelated to my cancer history), and I know he has a huge file at this point with years of history on me all in one place. I see him at least twice a year and typically see my oral surgeon once or twice a year, and my periodontist twice a year. I also have annual followups with my radiation oncologist. I continue to have annual chest x-rays, and my oncologist has been tracking my TSH levels fairly regularly over the years.

It's been very important to me to have good continuity with a handful of doctors who know my situation well and seem to be very attentive to any warning signs.

Cathy

Reading this thread has really helped calm me and my husband down quite a bit. I am the one who started the thread below this one. The more I think about what transpired the other day, it just doesn't make sense and I think the radiation oncologist has unnecessarily frightened us. He didn't really do anything more than a quick look-see and then put on a glove and felt the area at the base of the tongue for a few seconds. He felt the lesion, thought maybe he felt a "tiny" lump. Based on this, he told us he thought the cancer was back. After proceeding with this discussion for a few minutes and calling the surgeon and ordering a neck cat scan, he then saw how much he has scared us and came back and said, oh, but you know, it could also just be a non-healing spot that might need to be treated with hybaric oxygen. That he really didn't know. I'm beginning to think that our R.O. was just really out of line with the way he presented this to us. I mean, how could he know by just poking a finger down there? And also, wouldn't it be pretty unusual for a recurrence to happen this soon? The R.O. told us it wasn't. However, I just read a report on 2 large studies (close to 500 people each) that showed for T1 tumors that had both surgery and radiation, the cancer did NOT recur at the local site (site of surgery) about 90% of the time. I've also read the recent full Anderson M.D. study (published May, 2004 I think) on the use of surgery + IMRT radiation that had a similiar number cited. So, it seems that the odds would be against this. Also, its not like this spot ever healed and came back. He had the surgery in Feb, it was starting to heal, he had the radiation and then it started to feel worse with each passing week. By the final week, it was very painful, and it has never healed. Thanks again for all the info above, it seems to support the idea that there may be no worries here after all. Still waiting to find out when they are arranging the appt with the H/N surgeon next week.