Hi. I want to write an article about the patient experience of appearing before a tumour board. (We call them multi-disciplinary-panels here in New Zealand.) I've appeared in front of one twice and think that first one was one of the weirdest experiences of my life. It's like some nightmare experience of being a celebrity at a press conference.

It's gratifying to know that about 15 to 20 (?) medical professionals care about your case and make the best possible decision. But what a daunting experience it is.

I would appreciate any of your comments about the experience from a patient point of view. How did you feel? Is it all a blur?

Here in Auckland a group of head and neckers is formalising its support group and, from next year, producing a proper newsletter. I thought a range of views (anonymous) might give me useful material:)

Hi Maureen, we found the experience completely overwhelming.
We have also been there on 2 occasions. I dont think anything prepares you for that level of scrutiny.
It could even have been a job interview. Will they offer treatment? Won't they? Can they treat this? I remember sitting in that crowded room praying that the team would offer treatment , praying for them to just fix this.
I was staring out the window not wanting to look. One of the Team said to me,
" come over here and look at this tumour". My goodness, that was the last thing I wanted to do. I didn't even want to be in that room, let alone look at my Husbands tumour!
The 2nd time I knew what to expect. I watched the surgeon as he examined and scoped Kris, intently. I knew from his facial expression and his quick glance at me that this was not going to be an easy fix.

Tammy

I was never asked to attend a Tumor Board Meeting, although there were probably around 7 such meetings through the years where my case was discussed at. I guess if I asked or was unsure of the treatment or process, maybe I could have attended, but it doesn't seem to be a practice where I was treated nor have I heard it discussed by other patients. I know patients have attended the Head and Neck Cancer Support Group Meetings to hear the patient aspect to help decide treatments, and ENT had me speak to a patient going through a similar surgery as mine.

Thank you Tammy and Paul. Maybe you don't have meetings with the patients present in the US. In NZ we are placed on a raised platform in the front of the room while numerous medicos come and have a look at our mouths and throats. Surgeons feel the tumour, the dentist looks at the teeth, other people come up and ask politely if they can have a peep. There's some sort of screen with a camera attached I think so everyone can see the tumour, but I'm not sure, it's hard to notice details while your life is in their hands. After this scrutiny, we wait for many hours while the docs discuss all the cases they've seen that morning and then call us in to tell us what decisions have been made.

I'd be interested to know if people in other parts of the world do indeed appear in front of the panel.

In Ontario, Canada we don't appear before the tumor board.

That's interesting, Alpaca. Not sure I would like it though. I'm not sure either if my experience is similar with every center here. Sometimes I did have to see another specialist during some of my initial visits, each recurrence, time permitting or the doctor had them come see them/me for a quick consultation in the room like ENT, Oral Surgeon, pathologist, Speech Pathologist, Dietician, but never all at once. I have heard, especially those from out of town, who saw everyone in one or two days. Also, I pretty much knew most of my treatments before the tumor board meetings as one of my doctors was the co-chairperson of such, and said what my treatment would most likely be, and usually were, so that helped.

Paul, I see you as someone who could probably have coped with it and asked intelligent questions. From the reaction here and after searching the internet, I have concluded that it's not international practice for the patient to attend.

I wouldn't like to see the patient excluded because it seems to me that seeing the real person in front of them will give medical professionals a better insight into treatment needed. Lots of people come up and ask if they can look at the cancer site. They then go away and discuss the people they've seen. After many hours of waiting the patient is brought back into the consultant's room and given a treatment plan and a date.

I think it's a good scheme but there's a lot of room for improvement in the way they handle patients before, during and after.

Hi,

I was lucky to find this forum right after being diagnosed and was able to do sufficient research to get educated about the disease and the processes. Tumor board was mentioned so I made sure to mention my interest in first knowing that one was being called for my case and second informing them I wanted to attend.

I learned a lot by the time of tumor board from numerous visits with my medical team and discussing things in detail so there was nothing that was a surprise.

Even still, the level of dialog went over my head from time to time and it freaked out my wife when two doctored had different opinions on a specific topic. It was only a positive experience for me as it is so impressive to have so many medical professionals in one place, all focused on the specific and unique condition you have.

Another benefit is the ability to second guess afterwards is greatly diminished. It is easy to know that whatever you think up would have been a better decision is hard to hold up against a room full of experts.

I was going to say that it could be beneficial for the patient to attend the tumor board meeting, some cases, maybe not. In my case, if needed, it would have been beneficial due to my age and physical appearance since most say they would never know what I've been through if I never told them just by looking at me, and look strong and healthy. At the same time, I was denied consultation at a top or the top cancer center in the U.S. after they reviewed my records, which was required to be sent even before a consultation date was set. I guess I was too risky/complicated case on paper to become a patient.

I don't ask many questions, go alone, and mostly watch, listen, and don't take notes to cause disruption in the conversation, but may jot down a note or two after I leave. Forget about recording, I wouldn't like it and neither may they, and some may be guarded in their conversation, and not as open as they are. I pretty much know as much as I can before any of my visits, including the doctors background, which is most of the work, have all the material/tests they have, so I may ask for clarification on a point or two, if needed.

Maybe if they see a fit, healthy looking patient they can factor that into the treatment plan. I find your approach to consultations interesting. Having a list of questions is what most people advise. Instead of that I've sometimes written a paragraph and forced the doctor/dentist to read it. I'm often struck dumb in a consulting room and find a written explanation of my woes useful in extreme cases. I have a tendency to want to get in there and out again with a clean cancer slate if possible instead of discussing quality of life issues that they may be able to help me with!

We do things similar. I know appearance helps in many areas, besides just cancer. One of my oncologists told me once to get/keep in shape, being I had so many recurrences, she said, so I won't be refused treatment, and also help in my recovery. I do write out questions for myself to ask, its just I don't usually show it, and rehearse them at home, and then again in the waiting room before I see the doctor, think of plans/answers A, B, & C, and keep the list on my person, and even look at in the exam room when the nurse leaves. I also have a written timeline, similar to our signature, including who else I saw since my last visit, and my current prescriptions and highlight ones I need. Which I do keep in hand, including current blood work that may have been ordered by another doctor.

I like doctors that have residents, physician assistants or nurse practitioners. I tell them more than the doctor, being their time is more limited, and let their assistant decide what is important to say to them. Often they bring up items for discussion or the doctor knows to keys in one of the areas I mentioned, if not, I bring up important matters myself.

It's a lot of work just to stay healthy, and on on top of any issues, and have lots of experience, unfortunately, with 9 different hospitals, including 12 current specialists, and just finished my last dr appointment today, at a new CCC, where my doctor was recruited, totaling for the year with 95 doctor visits, 1 hospital stay, 1 surgery, 3 procedures, 3 scans,12 blood tests, 2 swallow Studies, 20 SLP, 2 EMG/nerve study, and 10 physical therapy, and it was a quiet year lol.

Good luck formalizing your support group, and hope this helps.

I can't add to my comment, but wanted to mention that I may have confused different levels of my meetings between those thar are initial visits for 2nd or 3rd opinions vs the rest which are mostly follow-up now, and developed a relationship with the doctor over time, and know how they operate/want. For my initial visit, I do go all out like a job interview. I have all my records, well most, since their in the 400 page range, including all my cd scans, reports, doctor notes, if needed.

Today, my 6 month follow-up, my doctor got a kick out of my radiation mask I decorated as spiderman, and asked me to e-mail a copy to him, and then we spoke about a recent abstract of his I found he published between doctors in regards to the early feasibility of receiving Proton Therapy for HNC, which I'm part of follow study, so he was happy to speak about that, and a concern of mine is to keep my doctors happy with me, and speak of other non related health items deepening on time, but it's two people having a concern/respect for each other, and I don't want to loose any, and most look forward in seeing me. Contrast MRI in January and PET/CT in June.

I agree with Paul.
I know that appearance and level of functioning is a very important consideration of the team when deciding whether to offer treatment or not. I also think that they like to see that you have an active support person on your side.
Kris had a stroke when he was 12 and has a residual hemiparesis. He was interrogated as to his level of functioning. They were particularly concerned when offering chemo or not and he was tested quite extensively for limb/nerve functioning.
The Tumour Board also felt a lot like a conveyor belt. Being as how all the patients initially waited together in the waiting room. Then were sent enmasse down to X-ray for the dental Panorex X-rays. then we were all put in little consulting rooms and waited. We could see the others being led up the corridor when their turn came to be examined.
Boy was that examination room crowded. It seemed like every man and his dog was there. Waiting for a glimpse of the tumour. Wanting to get a look at Kris. Lots of questions about his general health and symptoms. Lots of the surgeons coming to look and feel his lymph nodes. The radiation guys getting in too. Then Bob the Dentist examining and saying what teeth needed to come out.
Then off we go for a coffee and come back in an hour or so. More waiting
Trepidation. Who will come to see us and tell us the verdict?
I felt we only got a very brief explanation of what treatment entailed, and what to expect. Really we had no idea and we just floundered our way through.
I do think that this could be done better. I think the Nurse specialists should come in after the Dr's and give a much better and detailed explanation of what treatment entails and what side effects to look out for. Who to seek help from during treatments.
Personally, I would have loved to have talked to someone who had been through treatment. This was such a fearful time in our life..
Tammy

Thanks again, Paul and Tammy. I like the idea of having a medical history at your fingertips and forging a relationship with the doctors as time goes on. I can also identify with the conveyer belt and "every man and his dog". My son was with me for the last one, sitting in the front row. He put his head in his hands when the doctors discussed how "lumpy" the tumour was and the nurse comforted him not me! I noticed how the fellows and registrars were very proactive, perhaps vying to prove their ability (not very charitable) or, knowing they would do a lot of the legwork, they wanted to familiarise themselves with it all. I sat there with my fingers crossed and my heart in my mouth. It was bearable though, because I knew they were looking out for me, however clumsily.I thought that I might not have received much post panel explanation because there were worse cases there. It's bewildering and follow up is essential.