T3NoMo Stage 3 Tongue, right, partial Glossectomy & Right Neck Dissection lymph nodes negative for tumor. Tumor Depth of Invasion 13 mm 11/22/2021
Perineural invasion present
Invasive carcinoma extends focally to the deep margin
Nonkeratinizing dysplasia, severe (carcinoma in situ)

I see a lot of people going through radiation treatments here. Is there anyone here that chose to not do the treatments? I am having a difficult time deciding if I want to do the treatments. At this point my oncologist said she removed all the cancer from my tongue and the lymph nodes came back negative. In my mind I'm trying to justify the need for the treatments and living with the side effects during and after. But it's hard to do seeing recurrence in people here with the treatments. I'm seriously thinking about taking a wait and see approach with close monitoring. I'm sure everyone here has gone through this tough decision. What made your mind up either way? I haven't discussed with my oncologist yet but will be doing so in two more weeks at my second follow up appointment. I went for a PET scan yesterday as a recommendation from radiologist didn't get results yet. I should mention I am 67 years old.

I received a call from the radiologist today informing me that the PET Scan came back clean with no indication of other cancers outside of the oral area.

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.

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.