Thursday I will be co teaching a workshop called the Colloquium on Head and Neck Cancer at the College of Medicine at Moffitt. My RO, Dr Trotti, requires all his students to attend and he said over 100 will be there. Obviously Trotti will handle the technical side and I am to address the patient side. The workshop is scheduled to last half a day so I will have plenty of time to address our issues. Some of the time I am "up" will be devoted to a Q and A session and Trotti said to expect a very open and detailed discussion.

This post is taking a long time since my office cat, Annie, has decided to bond with my monitor.

Anyway, I know my problems and since I have been associated with this site I have learned a lot about what other people encounter but it would be very helpful if each of you could perhaps mention 2 of the most important points you would like to pass on to these future cancer docs. I wish Brian's knowledge was crammed into my head one one day but that ain't gonna happen so I gotta go with what I can cram in with your help.

Always let the patient know what to expect from any proceedure even if it is routine to you or should seem obvious. Ex: I may have to cut off your nose and you will not be able to sneeze for the rest of your life.

Introduce yourself in plain English to the patient and any visitors. Tell them I am Dr. Q, a sinsterkeritonologist. I specialize in toenails of the left foot.

OK serious stuff
BEFORE hospitalization or treatment let the patient know what kind of aftercare, therapy, special equipment, etc. MAY possibly be required so that possible arrangements can be made. Surprises add to stress and written material is often not read or absorbed. A nurse reading discharge instructions should be a reinforcement, not a substitute for oral instructions from the doctor.
Have the patient or care giver practice any procedure, wound care, etc. before discharge.

Tell them they should use plain English, understandable by the patient, whenever possible. Ask patient to repeat back them to see if they really have understood.

Tell them to treat it as though they are a parent talking to young kids about sex--give them as much information about their situation as you think they can take in and understand at one go.

Tell them to use simple diagrams to help illustrate points.

Tell them to ask about who the patient has around to help with driving/note-taking, script filling etc.

Tell them to not let the patient leave a consultation without names/phone numbers and reassurances that there is someone they can contact between appointments about any queries/worries they may have--preferably typed up and reviewed regularly so that it's kept up to date.

Use Malka's wonderful idea of humorous invention of 'specialist' to demonstrate how a patient who has never heard of oral cancer feels on entering this new, confusing world.

And, of course, tell them about OCF!!

Brenda

One thing for sure is to tell them the Dr isn't infallible in his decisions and can be wrong in his treatment procedures. Tell them to all get a 2nd opinion . Don't forget the taking notes and having some one with them to ask questions and take notes. Let them know how their lives wil be changed as far as eating , tasting and swallowing. I know you will do a good job David and know way more than I do, but I want to wish you the best for that day.

One of the big things is let them know how your mind is affected
and how your life will change.

Ditto Malka's post....There is so much about oral cancer that is different from other cancers, and knowing what to expect is vital. For example, nobody told me that when they removed the surgical packing after my maxillectomy that I would not be able to speak or swallow. I was terrified.....and couldn't even express it except with my eyes! I thought I would choke to death. I had no idea what was going on. That was the least compassionate thing I have ever experienced. I was totally shell-shocked, when a compassionate preparation through even a nurse or a resident could have softened that effect. I was the center of attention for the doctor and the residents and fellows, but nobody saw ME.

I would stress the difference between oral cancer and internal cancers......that oral cancer affects not only a person's health and life-expectancy, it affects their appearance and function--how they present themselves to the world--how they perceive themselves. So there are psychological issues with oral cancer that might not be present with other less visible cancers. And there is always the concern about recurrence, so that even MORE of our faces and function might be lost down the line.

Since oral cancer involves function more than most other cancers, Malka's observation about being sure that the patient and caregivers understand how to cope with the changes in function is a great one. I was sent home from the hospital before I was able to swallow, but with no other means of intake. Nobody made certain that I was going to be able to eat and drink......and I couldn't do either. I begged my husband, a physician, to arrange for a feeding tube so that I could get some fluids and nutrition. We tried one more day and finally made a little progress (Bless that man!)

Now that I think about that very difficult time, I realize that my experience could have been made significantly easier if I, the patient, had been considered to be as important as the result of the surgery.

I was rushed to surgery without proper time to assimilate the information about what was going to happen to me, to fit the surgeon's schedule, not my needs. This rush prevented me from having the proper pre-surgical consultation with the prosthodontist, which has caused me difficulties that last to this day. I was sent home......two hours away....after just a day and a half in the hospital, without anyone checking to see that I could eat and drink. I was not informed about what would happen on my return visit to remove packing and dressings, and I was traumatized at that time. I had not had a pre-surgical consultation with the prosthodontist, so at 4:00 that afternoon, the surgeon had a resident call the one they work with, to see if he could see me then. WHAT in the world had he thought that I would do???? with a hole in my mouth, and blood and other stuff running down my chin, and terror in my eyes? What in the world had he expected me to do?? He didn't think. That's what. Somebody skipped a step, and it was ME, the patient, who paid.

And, while he has generally given me as much time as I needed, he came to tease me about my list of questions, so that I was self-conscious about asking all of them. This is a strange illness, and oral cancer affects so much of our lives, that there are many questions, and the doctor must be prepared for that.

Arghhhhh I shouldn't have gotten on such a rant. I am doing fine now, but my path from there to here could have been much smoother and easier on me, if my doctor and his staff had been more sensitive....and organized!

Organized....Every patient will have similar issues. There should be a sit-down session with someone to explain some of the issues....maybe some printed material.....something to explain more of what to expect.

David...You didn't ask for all of this.....but I can't go back and clean it up. You get my drift, I hope. sorry for the rant. I wish that I could come and give that seminar!

XO--Colleen

The one thing that was upsetting to me was in regards to post treatment.

Pre-treatment we got a big binder of what to expect from radiation and chemo. It contained nutritional recommendations and recipes. We had exhaustive meetings with everyone on the team. And, as awful as everything was, and as much as we didn't believe the side effects would pertain to my husband, we were well versed as to what to expect...and, everything they said would happen did indeed happen.

Then, on his last day of treatment, we were sent out to fend for ourselves with no knowledge of what to expect. Had I not had access to this site and specifically your posts, David, I don't know what I would have done.

I, personally, think that if a patient doesn't have a PEG they should be checked daily post-treatment for dehydration. I have no medical training and I really struggled through those first couple weeks post tx. There were times Dan would go to sleep praying he would NEVER wake up. Finally, I arranged for home healthcare and I got him hydrated and things started to turn around.

Bottom line, we got a month of preparation for how to handle the treatments and tons and tons of monitoring during treatment.

Then, when you need them most, the medical team cut the cord and put all of the responsibility onto me. I think they should focus as much on the post-tx care as they do on the tx.

JM2C.

Good luck!

More thoughts,
After reading Colleen's post, I have this to add.
I am grateful that my doctor did an excellent job of informing me and my family beforehand. He told us that I would be in ICU for a few days following surgery so that did not come as a surprise. He said that I would have a tracheotomy and a Nasal tube. He acknowledged when a proceedure such as removing sutures was painful. He informed us how long it would take to get biopsy results. He introduced his residents, interns and students by name and identified their status. They also did the same if they came with a new college who had not met me. Other doctors on the team did the same. If he used me as a "demo" he spoke to the students as though I were part of the team. He was always cheerful and acknowledged visitors. He made sure that we knew and understood everything happening.


Make sure that when a proceedure is finished anyone waiting is informed. I am told that my sister and daughter-in-law were waiting to get results of a procedure while I was already back in my room.
Let the patient know the probable schedule of follow-up office visits, tests, etc.
Identify yourself as either a physician, resident, intern or student.
Say hello and goodby.
Say your name clearly particularly if either you or the patient is not native to the region.

David,

The one thing that I know I don't have to add to your comments is the relevance of good nutrition and hydration. You are a good example of the dark side and then the healing that began when you followed good procedure.
I had the benefit of this board pre-treatment and I know that pushing everyday to get 6 cans of Ensure (sorry, insurance company provided this not VHC ) and at least 48 ounces of water into Bill, made all the difference in his recovery. He was not with it enough to keep up the schedule.
So...I guess that would lead to the importance of the caregiver in a good outcome. I know it must be huge...doctors need to query their patients to make sure they have someone to get them thru treatment.

On that note, I reread Bill's initial reports from Moffitt and each doctor made note of the family situation, i.e....was there a good support system??? Very important. Deb

David:

Its an honor you were asked to speak about oral cancer.

I would suggest that the doctors make sure the patient really completly understands how much their life is going to change and it may not go back to how it was before. This needs to be started upon the first consultation, before treatments start so it sinks in. The patient needs to know that recovery for this type of cancer isnt a few months it can be years.

The doctors also need to know if there isnt a caregiver available what to do. My hospital sent a visiting nurse, which was helpful but not the same as having a caregiver. I had no one telling me or helping me to eat, drink, with medications, or with the PEG. Im very fortunate, Im here to tell about it, someone else may not have gotten thru it as well.

The doctors also need to give their patients all the info as to how bad it will get. They may be afraid of scaring the patients, but thats better than not telling them. I was told some things, but I was not prepared for the terrible side effects of fatigue, nasuea, eating problems, mouth sores, etc.