Hi
I'm a member of a group of head and neck patients setting up a support network in New Zealand. From talking to our (at present small) group, it looks like the biggest unmet needs are in post-treatment dental care and information. Patients want more info. They don't want it drip fed from diagnosis but told to them honestly right from the start. Apparently some patients are called "blinders" because they don't want to know but does that mean the rest of us cannot be informed more thoroughly? What do you think?

This is a topic that is very patient-doctor specific. There are doctors who prefer to not divulge too much detail while others offer more. Doctors are far more scientist than therapist so it is not surprise they do not ooze empathy.

Then there is the patient, covering the spectrum from bag on head to full face at the fire. Some really are so scared they have zero interest in knowing what is going on and really do not want to know any of the details. Then there are those (like me) who got as much education as fast as possible and went to every meeting with a list full of questions.

As to post treatment issues, many of the staff who see you through treatment just do not follow you along afterwards. And those that do are mostly trained to get you through treatment.

Finding professionals who specialize in post treatment issues is a challenge. I am just now 3 years post and still see both my MO and ENT. Fortunately, my only post treatment symptom is the typical tight neck muscles where the radiation was targeted. Neither really offer any specific recommendation - just a nod acknowledging they've heard it before.

Dental issues is something you definitively need to advocate for yourself. The main thing is to ask if the dentist or oral surgeon has treated a fair number of oral cancer patients who were radiated. From what I've seen here those who were treated with surgery only or chemo but no rads generally don't have post tx dental issues.

Don here describes what I have observed as well. To the treatment team I would also add the pharmacist. The pharmacists at my local drugstore took a lot of time to educate me on the effects of the multiple medications John was taking, the possibility of conflicts and how best to take certain meds to ensure that the patient reaps the full benefit. They told me that they were happy to take the time because I was interested in learning. I think that's the same with doctors and nurses. If I showed that I knew something about what I had a question about (even using some of the medical terms like "postural hypotension") they were much more inclined to give me more info and to have longer discussions. John was not an uninterested patient, but it was just too much complexity for him to keep the details clear in his head. I felt that as caregiver/case manager, it was a vital role for me to play.

Somewhat related, The American Cancer Society has newly formed Head and Neck Cancer guidelines, as was mentioned here, "The Forgotten Patient, New Guidlines Help Those with Head and Neck Cancer." Further information can be obtained from ACS covering subjects from A-Z, pretty much what OCF has already covered through the years, but ACS do have Guideline for clinicians.

http://oralcancernews.org/wp/forgot...s-help-those-with-head-and-neck-cancers/

I was and still am the type of patient that wants to know everything right away. I had some doctors who would not give out test results (ex. biopsy) over the phone and others who would. When I was first diagnosed with OC in 2005 it was difficult to find reliable information about our cancer and I did not find the OCF website and forum until 6+ months after I was diagnosed. I sure wish I had found OCF sooner as I know I would have chosen a different treatment path such as heading to a major cancer center for treatment.

Every patient is different. I have a good friend who was diagnosed with thyroid cancer a few years ago. I advised her to go for a second opinion, but she elected to stay with her local doctor who recommended an "easy" treatment. Sadly within a year she found out the cancer had spread and now needed more treatment. I've know her for 20+ years and she knew all I went through, but yet kept the "blinders" on and went for the easy treatment.

Paul - good article! Thanks for posting.

Thank you for these responses and the very useful link. I've found OCF invaluable ever since my first big surgery in 2009. New Zealand has a different medical system - which is why we need our own support network - but the underlying principles are the same. When people warn about the dangers of the internet (really!) for patients, I always think, "but I found OCF on the internet".

Now I am engulfed by the flames of late effects, I better understand why doctors don't tell us all that we will face. For everyone I know, I have yet to see any 2 with the same issues. Why worry everyone when in reality they will only have a few of many possibilities? Even considering every bad day, the good far outweighs the bad. If I had known what was ahead, could anything have been done different to prevent it? I don't think so. It has been invaluable for me to have email and mobile numbers for my medical team. We get more done through the messaging component of the electronic charting system than face-to-face appointments.

Thanks Susan, it's pretty significant, lengthy, and believe it's part of some type of care/after care written plan required of doctors/hospitals maybe by CMS for all cancers as I've seen other types too. I've seen the proposal awhile back, but don't recall all the particulars, besides, cancer survivorship is now a big part. I see all types of meetings, programs for survivorship for patients and medical personnel, and going to an all day cancer survivorship program in July myself..

Alpaca, have you seen the Optimal Cancer Care for People with Head and Neck Cancer from the Australian Government? If not, it may be if some help. Seems like a problem connecting with a link, buy I have it on email, and works.

http://www.cancer.org.au/content/ocp/health/Optimal_cancer_care_for_people_with_head%2520and%2520neck_cancer.pdf

Thanks, Paul. We have our own guidelines in New Zealand too but I was interested in the Australian document. I like the American Cancer Society link above, "The Forgotten Patient". As for our local guidelines I find them "aspirational" rather than actually carried out. I feel my care has been ad hoc with no post treatment plan of any kind. I have had to be my own advocate. No one spelled out for me what a severed facial nerve would entail, what would happen to my teeth or how to avoid ORN. I've been fortunate enough to have access to a support group initially run by the hospital where we have been informed quite well about H&N cancer by some excellent speakers but I grieve for my own case where there has been no continuity of care and each new doctor is confronted by my complex notes and can't tell me anything about prognosis.
As far as honesty goes, I've witnessed a hunger for information in quite a few in our group. There's a contradiction though, that I feel in myself too. We want to be told the truth like adults but we want it done in as positive and hopeful a way as possible. Another theory I have is that I come across as a bit naive when I'm in the consultation room so they go easy on me, thinking I'm not intelligent enough to understand the info or brave enough to face it. No matter how I prepare for consultations, there's no guarantee I can act like a rational adult while in the room. I'm even worse if I have a support person!