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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.

Last edited by glenn347; 01-14-2023 08:31 PM.

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You don't say what kind of cancer this was. Some behave very differently than others. SCC seldom invades by perineurial invasion along the nerve pathways, other do it all the time like ACC. So it's hard to comment very specifically. If you've had perineurial invasion, it's not possible to say that the surgeon got everything, because they certainly did not chase any disease down nereve pathways where they have a very difficult time actually seeing the cancer.

Choosing not to do radiation that your doctor is recommending is a dicy decision. They are recommending it for a reason, one that their many year of experience is dictating. It comes with downsides for sure, depending on how much, what type and where. It's not universally a problem, particularly if it is very targeted and avoids vital structures, and could be at lower doses. So there is no one size fits all answer to your question. If you don't do it and this comes back, these cancers are much harder to deal with the second time around. The only people that Ive seen here that did not have radiation as part of their treatments are those that were very early finds at very early stages.


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 your reply, my cancer is Squamous Cell cancer.


glenn
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I’d like to hear the results of your PET, which is not diagnostic for cancer. Just cells that are burning sugar faster than others. For sure cancer does this, but so does inflammation in cells. But there is a reason that radiation is used after surgery even w clean margins. (Except very small stage ones) There are cells outside of the margin likely, that are not malignant but dysplastic, so half way to becoming cancer. It’s a product of field cancerization as many SCC are not completely focal. It may take months or a year for them to go completely to the dark side. Washing an area around the original cancer with radiation ensures they are also killed.


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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Thank you for clearing this up for me. My problem is I have not talked to my doctor that performed my surgery since she called me to let me know the lymph nodes came back clean. I have an appointment with her on January 30th. On the phone she said they got all the cancer but as an "icing on the cake" measure with radiation, she would like me to talk to a radiologist. I had the appointment with the radiologist. He did mention about the abnormal cells that could turn to cancer and about microscopic cells at nerve endings that could follow nerves and form a tumor. He suggested radiation and to consider chemotherapy also. He ordered the PET which I did on Friday and should get the results tomorrow. Not talking to my doctor, and pretty much thinking I had a clean bill of health without seeing the pathology report, and reading into all of the side effects of radiation I was confused as to why I need to go through the radiation especially a lot of people here have the cancer return even after the radiation. Both of my older brothers had Leukemia and one passed away. It especially got me nervous when I read radiation exposure is one risk factor for most kinds of leukemia being that it runs in my family. I didn't want to cause more harm by doing the radiation in addition to the other side effects and still have a 15-20% chance of the cancer returning anyway. I'll keep you posted on my PET scan.


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Just remember you are talking about a cancer that we don’t always know why it occurs, and there are lots of different types with different risk factors and etiologies. While radiation is one of many potential risk factors, not for every type.

I would be more concerned with family history. That would be a bigger issue to me. A genetic frailty or predisposition you have no control over. And you don’t want to die of a different cancer while you are concerned with one you do not have.


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 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.


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Great news. Now you have a personal decision to make. I don’t think any of us here can help you with this. But know whatever your choice, we are here to support you. B


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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Thank you


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Well after 10 weeks from surgery a new growth came back in the same location which tells me my surgeon didn't get all of the cancer from my tongue. So, I'm going on February 9th to have this new growth biopsied and removed at the same time. Then I will be looking into radiation. When I had the first surgery my surgeon told me she removed it all from my tongue. Being new to this, with that news and supposedly clean lymph nodes, I figured I would take my chances and not do the radiation. However, learning now the possibility exists that some cancer can be left behind after surgery changes my mind about the radiation. Hate to do it but I believe I have no choice at this point.


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