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TORS, radiation, and chemo—choices
TORS+ vs Radiation/Chemo
I’ve been diagnosed with p16 (HPV)-positive oropharynx cancer, stage one (cT2N1M0 p16). I have one positive lymph node infected, a likely second positive node, and a questionable third node—all on the same side as my tumor which is at the base of my tongue.
One option is the TORS route. I would have TORS (robotic) surgery done and concurrently a neck dissection to remove the infected lymph nodes. Some people can get by with just the surgery, but my surgeon says that adjuvant de-intensified radiation therapy is “likely expected” about 4 weeks after the surgery, and there is the possibility of adjuvant concurrent chemotherapy.
On the other hand, I could just choose de-intensified radiation therapy with chemo. They say this treatment has outcomes equal to the TORS. If I choose this route, I’m being treated with two modalities rather than a possible three. The more types of treatment, the more chance there is for negative long term effects with swallowing, eating, etc. One treatment (TORS), is better than two treatments (radiation and chemo), and certainly better than three (TORS, radiation, chemo).
In addition, the TORS surgery sometimes leads to range-of-movement complications in the arm and shoulder.
I’m looking at the University of Michigan cancer program/team for this work because it’s home, and because they offer deintensification treatment.
I’d love to hear your thought on this choice and your experience with any of this.
Thanks for any thoughts you can share—Mickey
Comments
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Hello, WWMickey, and welcome to the CSN H&N discussion forum.
If you would choose de-intensified radiation therapy with chemo, would you still need the neck dissection?
I am of the mindset that if you have cancer in the lymph nodes, they should be removed surgically, but I am just throwing this question out there. Confer with your doctor.
If the outcomes are considered equal, I would think that de-escalated adjuvant radiation therapy (DART)would be a good choice and eliminate the procedure of surgery.
Especially since either choice you make will involve follow-up radiation and chemotherapy.I have seen on here in recent years talk of de-intensified radiation therapy.
There have been some postings and discussions on it.
I did a search of the site and found a few.Here is the search link for de-intensified radiation therapy...
There are 10 results per page, at the bottom you can click next for more pages.
It looks like the first 5 discussions for sure cover de-intensified radiation therapy…
Post 1.
Post 2 is the one you posted
Post 3.
Post 4.
Post 5.
I hope this is a help to you!
You can also try some different search terms. Just click the search magnifying glass in the upper right and type in your search.
No matter what decision you make, it is going to have to yours alone, but you are doing well by doing plenty of research.
Also, your care team can give you lots of great guidance and support.
I would just like to finish here by adding that no matter what choice you make, you want to be sure this is a once-and-done one-shot deal, you don't want to revisit this in the future if at all possible..
WHY?
- To be sure you got the optimum treatment for your case leaving virtually no chance of surviving cancer cells
- You only want to do this once
- As my Radiation Oncologist told me "This is a One-Shot Deal"
- There are a lot of functions in the H&N area and the more treatments and operations you have in that area the more chance of malfunctions and permanent issues (You only want to do this cancer deal once and done) This is not something you want to risk revisiting if at all possible.
- No matter which method you choose make sure your care team verifies that this treatment will mop up the rest of your cancer and you will be cancer-free. Or as close to that as possible. I don't think they can guarantee anything with cancer but you want to be as sure as possible such as 99% sure.
- Take the surest route to be cancer-free.
- Did I say you want to be sure and only do this once?
Wishing You The Best
Take Care, God Bless
Our Motto Here Is NEGU (Never Ever Give Up)
Russ
I would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.
I would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.
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Hey Mickey. Sounds like you have a similar Dx as I did. My post linked above details most of my process and treatment, and I just added to it a bit.
I am/was part of trial HCC 22-030 using various DART options following TORS. I’m pretty grateful for the reduced rads. You can easily find details on this trial with a brief search. Reduced radiation following a successful TORS seems to be becoming a standard of care, for patients in the appropriate stage/risk category.
I hear the MI program is excellent. I’ve been fortunate to live in Pittsburgh and have the Hillman center’s resources.
Feel free to reach out directly to me with any questions at all, or just post them and I can reply so everyone can see.
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Thanks much to Russ and Jowdy. I've been able to to take a cursory look at all the information you've provided. There's so much there, and so much for me to take in. I'm most concerned about losing arm movement. Luckily I'm right handed and the TORS+neck surgery would be on my left side. Still, though I'm 75, I still play tennis 3 times a week and would hate to go through shoulder problems for very long. My surgeon said there is a 10% chance of SOME permanent damage to arm range-of-motion, and 50% chance of temporary loss of motion. I just read "Radiotherapy Versus Transoral Robotic Surgery for Oropharyngeal Squamous Cell Carcinoma: Final Results of the ORATOR Randomized Trial" and it doesn't really mention the arm issue much if at all. Otherwise the two approaches seem to come out equal with overall survival, quality-of-life (swallowing, especially), and other adverse events, though the TORS had more pain and the radiation therapy more hearing loss. Deintensification was not part of the ORATOR trial.
Russ, you ask "if you would choose de-intensified radiation therapy with chemo, would you still need the neck dissection?" and I believe the answer is "no." I'll ask when I see the radiologist.
Jowdy, your arm trouble gives me great pause at going the TORS route, but I just don't know. They want to get me scheduled on Friday for Feb. 5 surgery. I see the radiologist on Thursday, and hope I get enough information during that meeting to make my decision one way or the other. The surgeon and radiologist are on the same team, I'm quite sure, but I'm also quite sure that neither wants to make my decision for me. At this point, my only certain decision is that I want the least intensive radiation possible (with good outcomes)—whether that radiation comes after TORS or along with chemotherapy.
Thanks again you guys. I'll read more, and I'll check back when I can. Everything seems to be moving pretty fast right now.
Mickey
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Mickey, I wanted to clarify some details about my shoulder/arm issues resulting from the neck dissection. I was “fully functional” even two weeks after surgery, which is when I started physical therapy — that is, I had near full range of motion, and could fully engage in PT, even mountain biked a few times the week before radiation began. But the SAN irritation did “shut down” my SCM neck muscle for about two weeks, and my trapezius muscles for much longer… but these aren’t absolutely required to be fully functional to be active and sporting. I expect your left backhand may suffer a bit but my complaints are very specific to my expectations set by my surgeon, and my high demands on my body for work, and my vanity.
I’ll follow that up by saying that my reduced radiation which was also only for three weeks, was quite difficult. I would say more difficult than my recovery from surgery. And even as a very healthy person in my 40s, still dealing with lots of stiffness and pain that resulted from the radiotherapy. I don’t know anything about chemotherapy at all. But I do know that I still think I would prefer surgery to radiation. Just my take.
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I had tors surgery for left tonsil and base of tongue hpv with neck dissection. And low dose radiation for about 30 treatments.no arm or neck problems. Still have some trouble with my swallowing at times but all in all I'm good. Wasn't sure I'd be able to eat at all.had a feeding tube for about a month. Can't say which route to go is best. But I chise tors and radiation. No chemo.
Good luck on your journey
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Thanks, Segall, and all. This is all good information. I have now talked to two of the major players—the surgeon and the radiation therapist. I've also seen the dentist, gotten a swallow test, and another PET scan all in the last week. Today I have a virtual meeting with the medical oncologist. I'll need to make my decision this weekend.
I've been thinking more about the TORS/neck dissection as my route, partially because choosing that route in this study (named Customize) is the route where I'm least exposed to radiation and chemo (if chemo is even necessary). I need to protect my kidneys because I'm stage 3 CKD. I think the chemo, while tolerable, might degrade them a bit more, or at least has a chance to, compared with trying to avoid it altogether which the surgery route will allow.
I'll talk with the chemo guy today and see what he thinks.
Again, thanks for your time and thoughts.
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Well, WWMickey, you certainly had a busy week.
Such is it when the diagnosis of cancer hits.
Appointments, tests, scans, blood tests, etc.
Glad you have it all done and talked to the surgeon and the radiation therapist. You have certainly done your homework to guide you in your treatment decision.
So sorry you have to deal with Stage 3 chronic kidney disease on top of all this, and it certainly plays into the whole thing to be considered when choosing the path for cancer treatment.
I am praying for God's leading and guidance in making your decision, and the same for your doctors and medical team.
I know your final decision will give you peace and the confidence to move forward.
Wishing You The Best
Take Care, God Bless
Russ
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Hello all. I had TORS surgery Wednesday and they got clear margins after 3 passes. At least I think they did. I’ll double check that. I know I’ll be doing radiation after the neck dissection heals, in about four weeks is my understanding. Right now I’m learning how to swallow again! Very difficult. I’m going home today or tomorrow with a nose feeding tube but I hope I don’t have to use it. I’m going to try building up my swallow strength with Boost drink. I’m writing on an iPad now and will stay in touch a bit more when I’m back home. Take care—Mickey
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Hello, WWMickey, I am very glad and celebrate with you for a successful surgery with clear margins.
Good luck on working on and strengthening your swallowing.
But don't hesitate to use the feeding tube if necessary, that's what it's there for.
Also, you can do swallowing exercises anytime for H&N cases, not just when you have a feeding tube or are recovering from surgery. In fact i think there are H&N folks that do them just to help keep their swallowing enhanced and to always counter the effect of head and neck treatment.
Swallowing Exercises and Postures Dysphagia Treatment Swallowing Exercises For Patients with Head and Neck Cancer Starting Cancer TreatmentNow to go home and heal up from the surgery.
Then, follow-up radiation to mop up any hidden cancer cells.
Wishing You The Best
Take Care, God Bless
Russ
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