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Is it better to do DART Radiation after TORS Surgery or just Follow Up
Asking for input on our decision to do 2 week DART Radiation after TORS Surgery or just follow up every 3 month for 2 years.
My husband age 63 had TORS Surgery on April 2nd to remove an HPV16 positive tumor on his right tonsil and also right side neck dissection for lymph node. The tonsil tumor measured 3.2 cm. with Focal LVI (lymphovascular invasion) present but no perineural invasion. The surgeon needed to do two cuttings, first for the tonsil, second for the tongue base. Only one of 37 neck lymph nodes removed involved metastic carcinoma measuring 21 mm. NO extranodal invasion.
The pathology report after surgery indicated that the first tonsil cut showed ‘suspicious for squamous cell carcinoma’ and the second cutting of the tongue base margin came back with 'negative margins for malignancy' and the blood test for HPV Cancer came back negative. He is cancer free at this point in time and for this we are extremely grateful since the doctors caught it early.
The tumor board said that radiation was not necessary given the pathology results and there was a less than ~10% chance of cancer returning. However, they left it up to him to decide whether to do radiation treatment which would reduce his chances of the cancer returning to less than ~5%. He qualifies for the DART Program, so he would received radiation 2 times a day, 5 days a week for a period of two weeks. He would be given 2 baby doses of chemo (Docetaxyl).
We are both really struggling with what to do in this situation. All thoughts and experiences welcome and we wish you well as you all go through your own recovery journeys.
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@gangcarotid1
I'm sorry you've endured all of that, but I'm so thankful they discovered the kidney tumors early and dealt with them. As you know, those are silent and discovered way too late in many instances. I'm so happy to hear your other tumors were identified as benign. Unfortunately the surgery to remove them isn't always as benign. So glad to hear you're doing well!
Having access to such competent and compassionate medical care is something I am incredibly humbled and grateful for every day! All the best to you and thanks for sharing your story!
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1 ReactionHello. I'm 76 and had TORS and a neck dissection two months ago for throat, base of tongue, and lymph node cancer. My diagnosis was T2 N1 M0, p16 positive. My goal was to avoid radiation and chemo, mostly because I read deeply about long-term consequences of the radiation but also because I have some kidney issues and wanted to avoid chemo if at all possible. I joined the CuSToMIze trial at the University of Michigan because if, after surgery, it was thought that I needed chemoradiation, I could receive it at a reduced dose (time) depending on the amount of "cleanup" that was needed. My surgery resulted in clean margins, and two of the seventeen lymph nodes removed were infected. After surgery, like your husband, I was (am) considered cancer free.
The tumor board recommended that I not receive radiation, and I did not/have not tried to second guess them on the recommendation. I suppose I could have made the decision to get the radiation, and they would have done so. My surgeon and I discussed the possible need for radiation down the line, and I see that he wrote in his notes that "Radiation would be an excellent salvage option for recurrence, which would be rare." I understand that recurrence runs at about 10%, which you also mention.
I feel comfortable going with my surgeon's and the tumor board's recommendation. I guess it's like playing the odds. I really, really hope it doesn't come back, that I don't need the dreaded and debilitating radiation. I'll go back for a PET scan and second HPV blood test the first week of June to see what's happening. Until then, I'm working on swallowing exercises, using the prescribed toothpaste, and building my strength/stamina back up in case I need the radiation. I'm happy that I'm going to get in a month of (old-guy) tennis before any radiation, should it be needed.
I understand the difficulty of your decision. I decided to follow my team's advice. I just don't want to do the radiation unless it's absolutely necessary, even if it is at a reduced rate.
Good luck, and I'm happy to share more about my ongoing experience if you have any questions.
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5 Reactions@mickeyw Thank you for sharing your personal journey Mickey and congratulations on being cancer free! The decisions surrounding adjuvant treatment are not easy ones and every case can be different so we all do the best we can in making them.
It’s good that you are doing the swallowing exercises in preparation of radiation should you need it. I am wondering what is the special prescribed toothpaste that you referred to?? My husband is going to use the fluoride trays several times/week after he is healed from radiation and then on an as needed basis determined by his dentist after that.
I wish you all the best on your upcoming testing in June and enjoy those tennis games!
@cara5 Thanks for your good wishes! And I send good thoughts your way too. My prescription toothpaste is a 1.1% sodium fluoride paste—just brush as normal with no rinsing. It's called SF 5000 Plus and is made by Cypress Pharmaceutical. It was prescribed to me by a dentist at UMich when the plan was, at that time, for me to forego TORS and just do radiation and chemo. I remember her saying that I wouldn't need some kind of tooth/jaw guard that is somtimes used during radiation. The idea was that I would simply need to maintain the strength of my tooth coating before, during, and after radiation (she said the rest of my life or forever). The trays your husband will use probably serve a similar purpose, but the extra strength toothpaste may be a good thing too—no harm and maybe a help. Good luck, and may the Gods be with you—
@mickeyw Thank you for this information and well wishes Mickey. 🙂 My husband has decided to move forward with the DART Radiation and he begins treatment in a couple of weeks. In the meantime he is meeting with the radiologist, the oncologist and their nurses and is getting fitted for the breathable mask he will wear when receiving the radiation. There is an abundance of appointments in preparation and everyone at MAYO Jacksonville has been friendly, professional and informative.