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This is usually the difference between going to an ent surgeon and going to a comprehensive cancer center. The surgeon has one skill set and that’s what you get, surgery. Most patients in a CCC are pushed towards follow up radiation because of those dysplasia cells that you can’t see. While not always there, because of field cancerization, they assume they are. Sorry you find yourself here, but at least it’s being dealt with early in the cancer development, and that means better long term outcomes.


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.
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My pathology report stated there were dysplasia cells present so I was aware of that. But did this new tumor come from those dysplasia cells that turned into this cancer or is it part of the original tumor that wasn't completely removed? I guess I will never know but a recurrence in 10 weeks sounds like part of the original tumor returned. Like pulling a dandelion out of the grass. if a few roots remain in the soil, you have a new dandelion popping up from the original in about a week. As it stands even if I did opt for the radiation, I don't think I would have been into my first treatment yet so I think this second tumor would have still occurred. Sorry if my explanations and terminology are not 100% correct but I am new to all of this and trying to understand it. These descriptions in my report caught my eye.
- Perineural invasion present
- Invasive carcinoma extends focally to the deep margin
- Additional findings: Nonkeratinizing dysplasia, severe (carcinoma in situ)

Last edited by glenn347; 02-01-2023 12:33 PM.

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This all means what you think. First with perineurial invasion this is a dangerous thing. Most SCC cancers do not spread this way. ACC cancer is the one that does this with routine. It’s very dangerous. You can not image its spread by this method easily until it is well established, also not good. Invasion by this method is not best dealt with doing surgery. This is a radiation solution usually. That there is advanced dysplasia present means that cells that are transforming to malignant but not there yet are NOT in an early watch and wait stage, they need to be dealt with. It is no longer a question if it will become malignant, but how soon. It also is likely too early for a return of cancer, this is more likely disease that was not mitigated during the treatment. Recurrences are most common at around 18 months to two years. And the report says this there is cancer in the margin of the surgery… so did not get clean margins and all of the cancer. Sorry to say all this so bluntly. But you need facts you understand to make sound decisions from.

Medical professionals often talk to us like we are incapable of understanding things. Or they would like to dance around uncomfortable truths about the outcome of their treatment efforts. It is hard to translate all that into a realistic plan and move forward. B

Last edited by Brian Hill; 02-01-2023 02:33 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.
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Brian, thank you for the clarification it really helped a lot. What would have been very helpful is for someone on the medical team to go over the Pathology report in terms that I could understand so that I knew where I stood. I just downloaded it from my portal and tried my best to comprehend it on my own. However, you made me realize from your reply that I am dealing with a surgeon and her job is surgery. She is supposed to be the best out of only 4 in our area and I like her. If I had gone for the radiation from the start, I'm assuming I would have been more informed by the radiology staff as to what my report stated and the seriousness of it. I was just under the impression that I was clean in the tongue and the neck and that it was just normal protocol to recommend radiation thus the reason I decided to take my chances and not do it. I'm 67 years old and never been in the hospital before this first surgery. My surgery again is on Feb 9th and I am meeting with the radiologist two days before surgery on Feb 7th. As with everything communication is key!


glenn
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In most cases patients benefit from, right from the get go, having a multidisciplinary tumor board and resulting treatment team and plan. I sat in on mine and was allowed to ask questions and comment. There were 13 doctors in mine at MDACC. There were some additional residents in attendance to learn. Some were actual treatment people out of surgery, radiation, chemo etc. but there was also a nutritionist, a psycho oncologist, and allied people even insurance and financial people included. (Being able to pay for any given treatment idea in a profit system like in this country is part of the equation) Everyone with different training and experience got to weigh in on what should be done with me to obtain optimum end results. The scans and test results were all on a couple giant screens.

They clearly had very different approaches to the plan, no surprise the surgeon favored surgery, the radiologist his profession. But until they all agreed 100% on the final idea, the arguments went on. There is little question that education and training bias exist in deciding what to do. In no big CCC does any single doctor get to determine what treatment a patient will get. It’s not what is best for the patient, and there is a lot of liability associated with getting a plan wrong. Unfortunately in the US medical system, doctors outside of bigger institutions, in private practice, are legally free to treat people they feel competent to treat, even with complex and multifaceted ideas like cancer.

The argument has often been made by many, that allowing say for instance an ENT head and neck surgeon to do procedures in the cancer realm as a stand alone provider should be limited to minor surgeries, and while most have privileges at some general hospital to have access to a surgical operatory, and they can choose the difficulty and type of operations they do there, that is not best practice medicine. Note the underlying, never said point here is, there are financial incentives to keeping a patient in your own practice. But this is how American medicine is structured.

To any ENT professional reading this, I used your profession as one example. I would say the same thing about a dental oral surgeon and many other professionals. It’s not an attack on otolaryngology.

Last edited by Brian Hill; 02-03-2023 03:40 PM. Reason: Last paragraph disclaimer.

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.
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Amazing how things have changed and are structured here in the US.


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Looking back, I’m wondering if with my scenario I could have prevented this second tumor from coming back with radiation. I had to wait 5 weeks after tongue and neck surgery just to get the biopsy results from my neck dissection. They were negative. I waited another 10 days for a radiologist appointment. He told me if I signed up at that appointment it would be two weeks of prep before we started the radiation. So that brings me into 9 weeks before starting radiation. I noticed my 2nd tumor starting to appear about 12 days before I would have started my radiation. As mentioned before in my previous post this 2nd tumor came back in the same location after about 10 weeks after having the primary tumor removed. If I decided to go with the radiation, would they have started the radiation if I had this 2nd tumor coming back or would they have wanted it removed before starting the radiation?


glenn
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It probably depended on a couple things. It’s obvious that in this time frame this is incomplete primary treatment, not a recurrence. In most cases doing surgery and then radiation on this is just duplicate treatment. Knowing that the radiation would deal with this small area, it’s not like they needed to debulk it before radiation, so outside of financial gain why would they do surgery again?

Surgery serves different purposes. 1. Complete primary treatment in very small focal cancers. 2. After having the maximum radiation exposure, salvage surgery to get what was not eradicated in the primary treatments with radiation. This is where things become often permanently damaging in terms of loss of structure, and compromised functional and esthetic outcomes. 3. Elimination of disease that is too close in proximity to vital structures that radiation would cause irreparable harm to. 4. Occasionally exploration of areas that cannot be visualized in scans adequately to determine the proper course of action. 5. And of course biopsy to confirm what you are actually dealing with, the gold standard.

None of these in your continued case is served.


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.
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My first question when I meet with the radiologist two days before my surgery is do I need to go through the surgery, or will the radiation take care of it if we start with the treatments soon. I assume if I have the surgery there will be a certain time for healing before the radiation can start which will only prolong things even more.


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It would be right to assume they will likely want to see a surgery site healed prior to radiation. What the impact of that will be I cannot speculate on. Thats a reasonable question to ask everyone involved.


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.
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