I have a question, actually kind of a survey...do you all visit an ENT on a regular basis? I had my first visit with an ENT since my tongue cancer diagnosis (due to an earache) and he was quite taken aback that I had not been having regular visits with an ENT. Of course, I told him I will definitely come in to get checked, I like getting checked. I know it is weird but that's me. I still get my regular checks from oral surgeon and onocologist. Please let me know what you all do about the ENT? Thanks so much! Carol

Carol,

Hi there - I see my ENT every 3 months at this point. He is the leading doctor of my cancer team I suppose because I kept getting referred from internist to surgeon finally to ENT. He has said I will see him from here on out. That's just my experience.

Pam

I'll be seeing my ENT the most for followup, I think. I also have an oral surgeon but he isn't the one who did the biopsy (that was an about-to-retire oral surgeon who is now retired), or even someone I saw until my entire treatment was over (if I'd seen him before he would have recommended pulling more teeth than were pulled and I'm not sure if I should be glad I found him so late in the game or not ebcause of that). So I basically view the oral surgeon as someone I'd go to if I or my dentist thought I needed oral surgery or possibly if the ENT saw something that needed a biopsy on my tongue or on the gums or something. So no regular checkups with the oral surgeon.

My radiation oncologist apparently views his role as only being that of an involved doctor during radiation. I swear when the breast radiation ended he sounded relieved when he said "there's no reason to come here for a checkup again".

But my medical oncologist is still wanting me to come in every two months and on the months I don't get a checkup from him I get a checkup from my ENT.

I have seen my ENT once a month since the end of treatment. He's told me this will go on for a year then be changed to once every 2 months this will be until 5 years are up. I am in the UK so our health care might be a little differant.

Carol,
I saw my head & neck surgeon every 6 weeks for almost a year, then every 2 months in year 2, 3 months in year three. He just informed my I am now going in every 4 months. The other docs (MO and RO) saw me at the same frequency until the major after effects subsided then moved me to semiannual visits. I get semiannual bloodwork and an annual chest x-ray and MRI.

Pretty much in line with the NCCN oncology practice guidelines.

I would skip the oral surgeon and switch to the ENT if it were me.

I am getting close to year four, and see only the ENT every six months, which I understand will be forever and ever more. I was followed by the Rad doc for the first year then discharged there. I e-mail the MO annually to tell him that I am alive and kickin' and he replies that he is very glad to hear from me -- apparently those of his patients who survive don't want remember him. I pop in to see the Rad people annually for the same reason. Carol, I completely understand your liking to be checked. I got to know these people so well and they did such a good job for me, that it is a pleasure to visit.

Wow, thanks for your replies! I guess I have been totally naive about the importance of the ENT Doctor in my ongoing care. I totally rely on my oral surgeon and trust him so much. I will now be seeing the ENT doc every 3 months for check ups, I see my oral surgeon in January for a check up and my oncologist again in March for a 6 month check up. I am glad I had that earache...Thanks All, Love, Carol

Hi Carol,

I went to see an ENT on my own, even though it was not suggested by my Head & Neck Surgeon. I had been seeing my surgeon every 4 - 6 weeks. The ENT scoped me and I intend to see him once a year for peace of mind.

Happy Holidays

Jerry

Hi Carol,

My original biopsy was done by an oral surgeon. There weren't clean margins and it was invasive into the floor of my mouth, where he wasn't comfortable working in his office setting. He referred me to the ENT who did the clean up surgery and alloderm graft so I wouldn't be tongue tied and my neck dissectomy. I adore my ENT and see him next in April to celebrate the 3 year mark. I would be happy to see him monthly again if I could justify it!
Sincerely,
Lisa

I see my ENT every three months now. Recently graduated to that from the monthly visits. Like Lisa, I have a very good relationship with my ENT. I actually enjoy the offcie visit. He takes an interest in what else is going on in my life and always has time to talk about anything that I want to bring up. He treats my family like gold. Couldn't have made it this far without him.

JOhn

I originally started with an Oral Surgeon (it is my impression that Oral Surgeons are on the "dental" side of the house and ENTs are on the medical side of the house) for suspicious lesions under my tongue -- At one point, while traveling, my InsCo didn't like me selfreferring my self to an oral surgeon (didn't have any in the state I was in on their list) so I went to an ENT. Been doing that ever since.

Since my recent tumor removal finally resulted in clear margins, I am having radiation but not chemo as a preventative measure. Since there is no medical oncologist (MO) involved, the ENT is by default taking the role of Ringmaster for the entire treatment. Based on history with Oral Surg and ENTs, I expect I will be seeing my ENT at least every six months forever.

Because I travel a lot, I have gathered all of the pertinent pathology reports, etc., and now even my CT scans on disk, so if I am somewhere else, I don't have to start a new ENT from scratch just looking in my mouth. My current ENT said that I should consider myself one of the "experts" in my treatment.

BTW, I have already applied the philosophy in the above paragraph to my other medical work. I keep paper or computer copies of all my lab work and keep a running summary on a few sheets of paper of pertinent stuf like cholesterol, BP, thyroid, PSA, etc. so a new doc (or even a current one) isn't wasting time shuffling thru a fistful of lab reports -- He/she has the numbers and trends right on one sheet for one kind of test.

Pete

Pete - your approach to your records is really good. I learned early on in the military to get copies of everything from dental records to medical reports and test results. I took them by hand everywhere I went. When the military ships you to 3 different duty stations around the world in less than 18 months, your medical records and personnel files never get there until you are already on your way to someplace else. Not all patients can tell the new doctors everything about what has happened to them in the last year. Cancer patient

Great idea about the laminated card - what about those medic alert bracelets - would that work for this kind of thing?

Brian, I should have mentioned that my habit of collecting my medical papers of course grew from my military experience of carrying records between duty stations.

I hadn't thought of the cumulative effect of radiation in regard to other medical treatment.
This will be something to discuss with my RO when next we meet.

Pete

Gary, my husband has a dog tag like thing that has his doc's name and number and other important info. He got one for me but I don't consider it a very sharp fashion accessory. Let me know if you want to know where he got it.

Pete,

When I moved here, I brought my CT scans, chest xrays and mammomgrams. When I found an ENT here, my ENT in Ks sent him all my path, visits, labs, etc. My ENT is going back to the Midwest to teach at the University of Missouri in Columbia so I asked for ALL of my records. I have them from my FP physician as well. I kept a copy for myself and make one for whomever might need it. I was in panic mode when I found out the doc here in Florida was leaving, but I will be fine. Laminated card is a great idea. I have my precription records on the reorder sheet from my mail order pharmacy, that made it really easy to hand over to my new PCP. I saw her the other day and she said "Why don't I have results from the CT and chest xray you asked me to order?" and I said "Because they are for my 3 year check up." I work WAY in advance!

Sincerely,
Lisa

There is a company just being formed that is trying to put, in a safe and secure database, a persons complete medical history with all scans etc. included. You would have a coded password for any doctor to access all this over the web that you could then give out. I have looked at the Beta version, and it is very complete and can be expanded into more things personal, such as living wills, family contact information, and more.

My dog has a small grain of rice size computer chip in his shoulder. If he ends up at the pound or at a vets office they have a scanner that they pass over his body that reads the tiny chip, and that has a code number it gives out. The vet or pound then can call a toll free number and access all the information about his owners phone number and medical records. It is infinitely updatable over the web by me. I personally would be wiling to have something like this put in me, but it would never be allowed. Fear of big brother and all that. So hence my 3X5 laminated card.

I don't think the medic alert bracelets that are premade would have enough information, unless they gave a first responder or doctor a mechanism for obtaining the massive amount medical data we all have, such as via the new company mentioned above.

Also related to lisa's post, don't think those three year old or 5 year old scans and test results are without value. They offer baseline data to track trends or to distinguish something new from something pre-existing but perhaps not mentioned in a previous report. For instance in my case the radiologist has stopped commenting on the small black spot on my liver for the last three years which has remained unchanged. Without the first one where it appeared, someone reading the last one might think it was something new.

Absolutely, Brian. I have a piece of lymph node under my sub?mandibule that shows up in my two post op scans, and is unchanged thus far. It is mentioned in the two post op scan readings I have, and clearly visible on the scan. It is the first thing I look at when I get the scan to take to the doctor. And as an FYI, I had the scans on CD to take to my physician, but the reader was in Radiology and he wouldn't have an opportunity to view it prior to seeing me, so I stopped at the hospital and got the film. Now I have both! :-)

Technology is amazing. I wouldn't mind having a chip on my shoulder containing all my health information.

Lisa

Another option would be to scan in your records and download onto a flash-card USB device; information could then be downloaded via USB port to any computer. I know friends who have various household data in such a form -- you could also put on a CD. In fact, my MP3 player which has a 20 gig hard drive can also hold these data, just hadn't thought about it until now.

These approaches allow all the records to be in one easily transportable form.

Gail

It is possible to purchase your own web domain name and post your own records to a site accessed only by password. With only a bit of computer savvy there isn't much to it. The domain names are VERY inexpensive, especially the .org names - $7 or $8 per year, and the web site hosting can be done for $3 or $4/ month. In fact, if we got together and shared a site, the cost could be much, much lower for each. Just a thought. I really like the idea of a hosted site like the one Brian mentioned. Tom

You will not get a secure web site for that kind of money. Also there are HIPPA laws regarding the data that have to be complied with as well. While it isn't discussed often, insurance companies have many mechanisms to discover a potential clients liablility to them in future medical costs, and while against the law, they find ways to not insure certain individuals. There was a big stink about this years ago when the AIDS issue and the gay community had problems with insurance companies. Security of the information about you is of significant importance. The OCF web store for instance, is much more expensive than what is being discussed here, to prevent hacking into it, to ensure the security of credit card information, and guarantee that people's private information stays that way...private. The web is a very unsecure place. That is why this company is going through so much to set it up well. Legal issues, and protection.

I have friends that do use the flash drive idea, and they scan the documents and save them as jpegs. This is a 50 buck solution, but you don't want to lose that small drive with all your private info on it.

One of the benefits to the CD's is that on a computer someone can zoom into part of an image and see things more clearly, which is a problem with fulll size films. But nt everyone has the software to read the discs, and film is always a good back up.

I know what you are saying. I was not seeing her as much as my oncol. I thought that was normal.
She makes the appointments though. I am going every 6 months now. I would like to see her more but she says no need. Since I am past the paraniod everything is the cancer coming back stage it really doesnt bother me that much.

Carol,

We see our ENT every other month and the radiation oncologist every otherr month. In essence we have an office visit every month and sometimes in between we see the chemo oncologist.

Also we have monthly exams with a dentist since radiation treatment was used.

I am the primary caregiver to my family member, (T2N1MO left later tongue with dx in 1/05)

Remember that we should be taking a Big Picture Approach to some of these things.

For example, a PCP or specialist may very correctly say, from his/her perspective, that for a patient's history and progress, X months between visits is satisfactory -- However, if I am nervous or paranoid enuf that it is affecting my life, either more visits or some anti-anxiety medicine is in order. Nobody has clear studies, I'm sure, but if a cheerful attitude is supposed to be good for your health, an anxious attitude isn't good.

I consider myself fortunate -- Because I travel so much and a fixed address HMO was not practical, I have a PPO where I pay a deductible and then 20% of whatever's left -- However, altho I get discounts for using the preferred providers, I can see whomever I want as often as they will see me -- There's no administrator standing there with a calculator saying "we see no need for more than 3.6 visits per occurance" or things of that nature. I'm also fortunate because my ENT clearly recognizes anxiety and does his best to deal with it rather than ignore it.

Regarding storage of medical records, keep in mind that as technologies change, we have to change also and the tech has to be good for home as well as for the Doc's office.

A relatively simple solution might just be to get an external 80G hard drive and plug it into a USB port. Copies of whatever can be burnt to CD or DVD and kept in safe deposit or at a relative's house.

Pete

All, thank you so very much for your input to my ENT question. Looks like I will be seeing mine every 3 months for now. Wishing everyone a very, Happy, Healthy New Year!!!!!!!!!!!!!!! Love, Carol

Well, as usual, I'm late to check in on a topic. I see my oral surgeon every 3 to 4 months and plan to continue to do so since he will be the one that does my surgery should I have another reoccurence. My ENT, who is local, gets to see me when I have a crisis. Neither seem to have a problem with this set up. It also allows me to keep all my checkups, scans and other tests at one hospital so the lung dr and the gastroenterologist have easy access to them. I guess I'm unique because I only had a oral surgeon, a RO and a dental surgeon where I went.

Eileen

Hi Eileen, I like you, only had my oral surgeon (whom I love) and my radiation oncologist treat me all along. That is why I was taken back by the ENT saying I should have been seeing an ENT all along, etc.....for this type of cancer. Well, like I said to him, I will be more than happy to come in every 3 months and get checked over! The more checking the better! Happy new Year! Love, Carol