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Thank you very much Brian you have been a big help and quite a relief to some of my concerns.


glenn
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Meeting with my radiologist two days prior to my surgery I asked the question if I can skip the surgery to remove my tumor that came back after incomplete primary tumor removal and just begin the radiation to remove it instead. She told me they always like to remove the tumor surgically if possible. She said they can learn more by removing it. They can study the depth and size and if it started to spread from the one side of the mouth to the center or over center. Knowing this they can concentrate on the areas needed to be treated. Also, by using the radiation to remove it they might have to adjust the radiation dosage higher to do so which is risky to other areas in the oral cavity. With this surgery much more of my tongue was removed than the first time.


glenn
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So the issue is always when you use a destructive technology like laser removal or radiation, you are going to destroy the tissues being impacted. So the doctors point is correct. I’m not for laser removal for instance of early stage one cancers vs scalpel removal for this very reason. You want to know everything there is to know about the cancer at that first opportunity, not vaporize it leaving nothing behind. That small tumor can yield a lot of information, like etiology for instance.

I’m assuming that all that they know from your first pass at treatment, which was surgical. The argument that they may have to dial up the gys of radiation, perhaps. But the area that is going to get exposed, is necessarily going to be bigger than the focal tumor. After all, not getting it all, and the potential for surrounding tissues to contain dysplasia means that the field is not going to be limited to just the tumor bed.

Nevertheless, outside of the issues for you, it’s no harm to do what should be a simple surgery, as long as delays in radiation waiting for healing do not impact any aspect of the ultimate complete resolution this time.

Hoping this all gets dealt with promptly and successfully. B

Last edited by Brian Hill; 02-13-2023 07:34 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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I was thinking the same thing they should have learned what they needed to know from my first pass at treatment, which was surgical, being she said she got it all. But honestly, I'm thinking how could they have known all of that if some of it was left behind. Where was that heading? And could that information be learned from this second go around? This second time she said she got it all! I'm having a follow up appointment with my surgeon on the 20th and hoping I'll find out.


glenn
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They knew what type it was, most likely squamous cell carcinoma as the most common one that occurs in that location. They probably sent the removed tissue to pathology which is where they saw malignant cells in or very near the margin. Those are very easy to identify under the microscope because of the very large nucleus. They could have, but likely did not explore this further. They still have that sample because they are required to keep it x number of years to refer back to.

The list of what they could have explored is very long, some of it very expensive. Were it other tissue from something more dangerous and aggressive in their minds, that could have included genetic testing that would have revealed the innermost secrets of it. This location is not known for it, but they could’ve looked for it being p-16 positive, which be a common question checking for HPV etiology if it had been on the base of your tongue in the lymph tissues there. And if you ultimately needed any kind of immunotherapy, that sample would give them the genetic markers to determine you were a candidate and for which one. So they will be keeping that sample long after u are out of the woods.


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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I am currently into my 18th Radiation treatment with 12 more to go and my 4th Chemo treatment and 2 more to go. I had a 2nd follow up appointment yesterday with my surgeon since my second surgery on Feb 9th and she said the tongue looked good, except for my mouth sores from the RAD treatments. My Radiologist office is wanting me to sign up for Genetic Testing Consult. I'm not sure how much information I can provide that would help me. My mother had cancer and both of my brothers but that's as far as I can dig for info. Would it really benefit me to take my precious healing time up for all of this? How will or can it benefit me at this point? Don't they need to draw a lot of blood for this (another thing to go wrong)? I asked my radiologist if I really needed to do it and she said if it wasn't covered by insurance don't worry about it. Well, it is covered by insurance. So here I am wondering if I really need to get myself involved in this with all that I have going on. And it would mean me travelling for this. I'm wondering why the big push for this now. I have heard several people talking about it. Is it just a money grab? Is it a push by the govt to get dna data in a database to help solve criminal cold cases, etc?


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A genetic test will give them the necessary information to see if a current or in clinical trial immunotherapy treatment will work for you when other options are not possible. Those therapies are many genetic based ideas. There is no government database of individuals genetic data outside of medical use, and most of that is localized to the hospitals that collected it, if it was a trial drug, the genetic data is cataloged with a number not your personal information, and kept by the pharmaceutical company that was running the trial. There are regulations that govern your private info, they don’t get it. What you are describing at a governmental level is conspiracy theory nonsense popularized in social media. There are plenty that believe it though. But there is no practical use of the data outside of drug development. The government can’t keep track of simpler population information as it is, let alone millions of genetic profiles.


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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Hello Glenn,

As far as your genetic testing requested, there more likely is benefit for research purposes I would think, rather than helping you personally. As to your concerns about the money grab and government digging etc. probably all are true also, but I don't believe any of us thinks we have privacy anymore. Evildoers will always be there seeking more.
Radiation has a cumulative effect, that is, there are limits over our lifetimes to a maximum accumulated dose, after which a medical physicist involved in your care will decide with your care team of physicians that you should not receive anymore treatments. After that, only diagnostic studies will be allowed to evaluate progression or hopefully resolution.

For me personally, after 103 radiation treatments, close to 30 chemotherapy doses and one surgery I was told that I could not expect any further surgical intervention, nor radiation treatment. That leaves only some sort of systemic therapy if the disease persists or advances. I have tried and recently stopped 2 separate immunotherapy trials after continued progression. Radiation effects and surgical scarring are what makes the doctors reluctant to intervene now because there might be greater harm than good done. I am less able to heal now because the body has been through so much. I learned all these thing over time that weren't expected of course, because at the very beginning after diagnosis I was told there was a 60-70% change of "getting it", but at this point I fall into a category of limited options going forward.

I hope this helps you in your decisions and wish you all the best. One thing I've learned to appreciate (and I have worked in hospitals for over thirty years myself) is the unbounded kindness of others trying to help.There's always something to be grateful for. Good luck.


HPV 16 positive October 2020.
Since diagnosis, have had 3 courses of radiation therapy, including IMRT, and chemotherapy, as well as one immunotherapy/trial that possibly caused locked jaw and was stopped.
I am currently in second/new immunotherapy trail (2/2023)
I had neck lymph nodes removed surgically (6/2021)
I have a chest port.
I now have PEG tube, February, 2023 after a failed swallow study and am NPO. Weight loss 145 lbs.
Married 36 years, two great chidden and wife are all supportive.
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