| Joined: Feb 2023 Posts: 7 Member | OP Member Joined: Feb 2023 Posts: 7 | My husband has stage 3 SCC. Two surgeries. One dirty node. Recommending radiation. Surgeon is managing the case and states that we do not need an oncologist on board? Curious for feedback. Thanks
Mary Beth richardson
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | Patients with the best long term outcomes are patients whose treatment plan was developed at a major cancer center and a tumor board that has people from many different disciplines of training and clinical experience. Peer reviewed published papers have found this to be the case in multiple publications.
Very small, carcinoma in situ disease many not require this in some cases. Stage three out of four stages is not this. Stage three disease seldom are surgical only solutions. So radiation is a serious consideration. There can be arguments about adding chemo to that mix, but you should at least hear what the chemo guy is thinking, have him make his argument to the group of doctors if he thinks it has value, then you will have enough information to make a truly informed decision.
Last edited by Brian Hill; 02-03-2023 01:44 PM.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Feb 2023 Posts: 7 Member | OP Member Joined: Feb 2023 Posts: 7 | So Brian, do you think we should request an oncologist? Thank you for taking the time to help me.
Mary Beth richardson
| | | | Joined: Feb 2023 Posts: 7 Member | OP Member Joined: Feb 2023 Posts: 7 | And we do have a tumor board on his case.
Mary Beth richardson
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | I would have thought a proper tumor board would have included a chemo based representative, as today it’s also inclusive of immunotherapeutics. My tumor board had thirteen doctors and allied professional in it, I attended it, and it was a robust argument between all about my treatment plan. There were no specialties not represented in it.
So I guess my question is were you allowed to be part of this, and who was represented in it. Formal tumor boards physically meet, all your scans are in a screen along with all your other work up information. It’s not a discussion by phone, online, or over coffee. And all disciplines of treatment and training are represented. What they decide if it was done that way, is usually not grey. I would go with that.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | I see you are in California. What treatment facility are you at?
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Feb 2023 Posts: 7 Member | OP Member Joined: Feb 2023 Posts: 7 | We are in San Diego with Kaiser insurance. Patients are not invited to participate. Our oncology surgeon said, we don’t need an oncologist, and chemo is not indicated. I’m a nurse with a lot of hospice experience and oncology care. I’m feeling the need to challenge this, I guess. We see the surgeon on Monday to hear tumor board recommendations. Thank you Brian.
Mary Beth richardson
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | So maybe a second opinion? This is the resources link on the OCF website. https://oralcancerfoundation.org/resources/Go to the best hospitals link. It will take you to an independent, well respected, review of all cancer hospitals in the US, you can sort from the national list, then by city or zip. There is one highly rated nationally on the San Diego list you may want a second opinion from. In my experience, no quality doctor cares if you get a second opinion, ones that feel threatened by second opinions I wouldn’t want as my doc. If they’re good, having their idea validated by another doctor is a good thing. Second opinions are normal and customary when you are dealing with things you don’t know much about. You body, your car, and more. Be informed when it’s important. Clearly you have a strong background to draw from. But that also means you know there are lots of variables throughout treatment. The only thing we have total control over is where and by who we get treated.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | 1 member likes this:
ChrisCQ | | | | Joined: Feb 2023 Posts: 7 Member | OP Member Joined: Feb 2023 Posts: 7 | Thank you again for the info and your time.
Mary Beth richardson
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