Is it better to do DART Radiation after TORS Surgery or just Follow Up

I'm just over 2 years post cancer. My tongue cancer surgery included reconstruction and neck dissection with lymph node removal. I healed up great an my speech and swallowing were great. Then came radiation. Radiation fibrosis which has effected my neck and tongue has created real challenges for my speech and swallowing. I was much better off function wise before radiation. If I had your choice I would ask my oncology team if they could describe how they would respond if my cancer returned. Is a 3 month interval often enough to catch the cancer at its early stage? What kind of surgery might be necessary? I would ask for as much detail as possible. I was not given the option. I did the full treatment. But the effects of radiation are like a second disease. They are with you forever. I know some folks on this forum have been able to stop radiation early due to successful treatment. Maybe ask about that as well.
You have so much to consider. Its a tough decision.
You are in my prayers.

@cara5 you have a good question here, and everyone being different with different levels of cancer can offer some valuable experiences. As one who is 14 years out from ear canal SCC, surgery, and radiation with targeted therapy, I agree with @sandy8043 about fibrosis, dry mouth, etc post radiation. I am just now dealing with fibrosis of neck, shoulder and facial muscles. However, I have metastatic SCC and my first met to my lung was surgically removed but showed lymphovascular invasion. I had a followup surgery to remove more lung tissue 18 months later when a new met showed up. But my cancer is not HPV associated. HPV SCC is usually quite susceptible to radiation. If I were in that situation knowing what I do now, I would choose the DART therapy. Radiation side effects will be much less. Did they offer or discuss Proton vs Photon radiation? Proton is not available in many areas, but may have fewer side effects. Consider a second opinion, even with a video visit with a large cancer facility or referral center. Another doctor may have a different opinion. They are the ones reading the studies and knowing the results of each treatment. Everyone is an individual though, and making this decision is tough.

@sandy8043
Hi Sandy, thank you for sharing your personal experiences and providing some helpful questions to ask. From what we have gathered so far, should the cancer return, and depending on where it returns, he would possibly need surgery again and he would also need the full radiation treatment and in addition the cure rate falls to ~70% after that. Also, he has sarcoidosis and from what we’ve read, people with this condition have a higher risk of getting cancer compared to the general population. He had to do lung biopsies prior to this surgery to find out if what they were seeing on the scan was the scarring from the sarcoidosis or cancer. So, should there be any visual changes from his last scan, they would have to biopsy for cancer again as well. The radiologist at Mayo has said that most of his patients doing DART at 30 gray, for 2 weeks, 2 x day tolerate the radiation pretty well but there is always that very small percentage left with dry mouth and swallowing issues.

Anyway, congratulations on reaching the 2 year cancer free milestone! I hope that you remain cancer free from here on in. Thank you again for all of your help.

@sepdvm Hi Sue, first let me say thank you for volunteering as a mentor for this group. It’s a wonderful way to help others going through the challenges of cancer.

I appreciate you bringing up some valid and helpful points. I forgot to mention that his DART Treatment would be done at the "30 gray level", for 2 weeks, 2 x day with baby doses of Docetaxyl. They would target just the neck. No one we spoke to mentioned Proton or Photon radiation, and maybe they felt DART would be the least harmful of the treatments??? We may have to look more into that, but the clock is ticking and we have about 2 weeks left in his surgery recovery to make a decision. I believe Mayo Jacksonville (which is where he received treatment) won’t have Proton available until 2027.

My husband spoke to the radiologist at Memorial Sloan Kettering in New Jersey, and they recommended adjunctive radiation. MSK is offering a trial at 30 gray, once a day with Cesplatin for chemo. Unfortunately, my husband has tinnitus and Cesplatin could potentially leave him deaf or with reduced hearing, so the DART radiation in conjunction with Docetaxyl is the better option for him.

In addition, my husband spoke to a friend who is an oncologist, and he mentioned that we can talk to many radiologists and oncologists and half will recommend radiation while the other half will say wait and observe. Nothing about this seems to be clear cut but I feel he is leaning towards doing DART.

Thank you again for your help. 😊

@cara5 - Hello, I'll weigh in in hopes my experience might help you process all the potential choices you have in making your best decision.

My case is almost identical to yours. I am a 65 y/o man who was diagnosed with Metastatic Oropharyngeal Carcinoma (HPV16 p16+). Stage 1 (pT2, pN1, cM0, p16+) Tumor size 26mm. Total positive lymph nodes 2 with no vascular invasion present. Largest tumor 35mm.

I was evaluated at Mayo Rochester early November and was enrolled in the DART 2.0 study and scheduled for TORS / cervical excision to remove 42 lymph nodes. Surgery was completed mid-November. After post-op evaluation I was scheduled for the de-escalated chemo/radiation arm (Photon IMRT, 30gy, 2xdayx10days with Docetaxol x 2 weekly). My radiologist explained the Proton vs. Photon choices and felt comfortable with Photon for my situation, and I was comfortable with his decision.

The rest of my comments are 100% personal opinion based on on my experience and not a recommendation of any sort. I was initially naive about the potential for serious side effects and permanent changes resulting from radiation therapy. My rad/onc and staff did an excellent job preparing me for what to expect and how to manage the very unpleasant weeks after treatment was completed.

During the two week time I underwent my 2xday radiation treatments I experienced little in the way of any symptoms until the final 2-3 days. Primary symptoms were fatigue, changes in taste/appetite, and the beginnings of mouth ulcers. The following two weeks were very unpleasant but, again, my team had prepared me so well not only by explaining what to expect, but providing me with the pain management meds and hydration support I needed to get through the rough stuff. The chemo (Docetaxel) was not difficult to tolerate but it did contribute to the taste/appetite deficits I experienced.

My treatments concluded just before Christmas. Today I'm almost 5 months out and getting more normal every day. Specific to the radiation treatments, I now have to use upper/lower dental trays every night to apply 1.1% fluoride to my teeth to prevent potential issues that might lead to radio osteonecrosis of the jaw. That will continue for the rest of my life. My taste is now back around 75% after my taste buds were destroyed. I still deal with meaningful fatigue especially after a workout or hours of yardwork. I lost close to 25lbs and I am maintaining the lower weight with a healthy diet and regular exercise. I bicycled around 2000mi/year prior to getting sick and I am on track to getting back to that and will ride a nice 40mi later this morning.

Several weeks ago I completed my first quarterly evaluation in Rochester and my PET scan and NavDX was negative...huge relief! Like others have mentioned on these pages....the fear of recurrence never really goes away but I am working on managing the anxiety I experienced prior to my first post-treatment NavDX/PET scan.

Now it all circles back to you. I have the ultimate confidence in my care team in Rochester. I read your comments about the tumor board feedback about no radiation treatment in lieu of monitoring. It gets nuanced when trying to make the best decision between 10% recurrence risk vs. 5% recurrence risk with chemo radiation. In my world I would have loved to avoid the radiation treatment issues I will deal with for the rest of my life, but dealing with a recurrence could be life altering as well.

My hope is that you are able to consult with your radiation oncologist and care team to discern the treatment option that is the most compatible with YOUR life. I just typed out the basics of what I experienced, so if I can ever be more helpful you are welcome to PM me....even if it's just a sounding board.

Prayers for discernment and peace with your decision!

@rebgen
Who are all the members of your Care Team at Rochester Mayo?
Why did they not recommend Proton vs Photon after-treatments?

@rebgen Thank you for taking the time to provide these insights that my husband and I found very helpful. They will provide us with a good basis for questions for his doctors. Because my husband has Sarcoidosis, we did some reading and there seem to be some studies that indicate the sarcoidosis makes him more prone to cancer, but there isn’t a whole lot of information out there about people with HPV Cancer and Sarcoidosis. However, that is one of the drivers for pursuing the DART Treatment, along with the thought that if his cancer returns, the effects of weeks of radiation at 70 gray would be more devastating than what he may have as a result of the 2 week DART Treatment. Like yourself, we both lead very active lifestyles and would like to continue to do so.

I was wondering if your doctors gave you the choice of treatment or no treatment? Were your surgery margins negative? And, did your treatment involve radiation just to the neck or was it elsewhere? Thank you for the kind offer for reaching out, we just may take you up on that.

And finally, congratulations on your good results from your PET scan and NavDX! Cheers to that and a 40 mile bike ride! May you continue to receive these wonderful results.

@gangcarotid1

My primary team post-op is lead by Dr. David Routman, MD who is a radiation oncologist at Mayo Clinic, Rochester. He and his staff have provided me absolutely outstanding care that is both compassionate and exceptionally competent. When we discussed photon vs. proton, I felt I had free choice to go either route. The bottom line was with where my tumors were located (and not), his experience was that photon provided excellent results with minimal collateral side effects vs. the minimal additional potential benefits of proton. The kicker for me was that scheduling proton would be significantly more difficult and not add much more benefit in my case. Reasonable people could make either choice....in my case I received prudent counseling and wouldn't change anything if I could have a "do-over."

I hope that helps!

@cara5

* I was wondering if your doctors gave you the choice of treatment or no treatment?
No. Based my case I was enrolled in the de-escalated arm of DART 2.0. * See my comments to another poster this morning.

* Were your surgery margins negative?
Yes. Clear margins after a couple attempts.

* And, did your treatment involve radiation just to the neck or was it elsewhere?
Yes...only the neck area to include the primary tumor site in the OP and the lymph nodes.

I can empathize with you with the difficulty in parsing out the nuances of your unique circumstances. My saving grace was my rad/onc and medical oncologist earned my confidence early with their frank and compassionate counsel on how to frame the best course of action for me. They supported everything with data and extensive experience, not just "here's what I think." All this is deeply personal and they get that.

Based on what I now know, I would not wat to endure the near and long-term issues with 70gy radiation over several weeks if there was another prudent alternative....2 weeks @ 2xday was more than enough for me. I'm inspired reading the stories of others who have/are navigating that bravely and positively. I'm incredibly grateful and humbled to have the choice I did.

Best of luck to you as you work through to your best decision! I love to hear about your active lifestyle. The emotional, spiritual, and physical benefits of a vigorous active lifestyle pay incredible dividends and help insulate you from some of the more debilitating realities of being treated for cancer....or anything else for that matter 😉

Continued prayers for discernment and peace with finding the best path for you!

P.S. It's sunny and in the 70's today so I'm off to ride another 50mi and soak up the good stuff.

Enjoy the ride!

@rebgen
Yes very helpful. I, too, am a patient at Mayo Rochester. In 2024 I was diagnosed with a tumor on the bifurcation of my carotid artery. My team unanimously said, "benign" as an educated guess (& they were right) but the endocrinologist felt there were too many symptoms for a small benign tumor so ordered full body CT. Found 2 tumors on my left kidney. They removed the tumors Oct 2024 (I put the neck tumor on back burner of course). 9 mos after that, they removed the neck tumor successfully. They also took a lymph node. ENT recommended thyroid testing and biopsy with multiple nodules Found on thyroid. So far, benign.
I go every 6 mos for kidney checks (rt kidney now has 'suspicious neoplasm') & now once yr for thyroid check.
So, I have drs on my team from urology, endocrinology, HNC (head & neck cancer). They are all top-notch; SAINTS. So grateful for them all.
Wishing you the very best in your healing.