Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
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:)



1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
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


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
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.



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
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.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
In Ontario, Canada we don't appear before the tumor board.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
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.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
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.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
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.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
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.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
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!


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5