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.

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, thank you for your reply, my cancer is Squamous Cell cancer.

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.

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.

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.

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.

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

Thank you

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.

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.

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)

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

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!

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.

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

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?

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.

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.

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.

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

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.

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

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.

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.

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?

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.

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.