Standard therapy vs de-escalated therapy vs Clinical trial

wdidg

Friends, I have been recently diagnosed with SCC tonsil (right) with p16 positive. There are multiple enlarged lymph nodes on the same side with largest being 3.7cm seems to be a conglomerate of 2 nodes. Recent CT also showed enlargement in left tonsil and few lymph nodes on left as well. They lit up in Pet too, but my doctor thinks there are more reactive. I have been talking to my local oncologists and mskcc. At local, they are suggesting the standard care of 35 rads, 7 chemos. Mskcc is suggesting they could do de-escalated 30gy and 40gy if I become eligible, along with chemo. The tumor size on right tonsil is 4cm and it seems to be spread deeply into soft palate. I am confused on which Tx plan I should take. Is it worth shifting to NJ to be treated at mskcc with possibly reduced doses? Is it even an option in my case considering the size of tumors. Any suggestions/inputs are greatly appreciated!!🙏

LuvnTN

From my own experience, there seems to be two approaches to radiation. Some are proponents of the de-escalated, lower-dose, and others stick with the higher dose tried-and-true approach. Unfortunately for you, you are left to decide which way to go... and I say unfortunate, because I can imagine it feels like your life literally depends on making the right decision. But, maybe that is not exactly the case. Both the IMRT and Proton doctors made reference to those low-dose approach doctors out there.. but, both of my guys were proponents of the higher-dose way. I really pleaded to consider lower dose... at least on the side with no presence of cancer. They pretty much stuck to their guns though. But, each case is different. What I would consider is getting a third opinion on your case. More input into the decision-making process could help you to make a decision and feel confident that you did all you could. A lower dose sure does sound appealing. Boy oh boy, how nice it would be to only get 30-40gy... and then, you also want to make sure that you only have to do it once. Good luck! Sometimes too many options just gives me a headache. Ask specific questions like: what % chance is there for recurrence with each option? What is the research that supports that approach? Is this a tried-and-true protocol that you have done with others? Is this a tumor board recommendation? I am sure others have good questions to ask the care teams to help make that decision. Again, I guess you have to wait to see if the de-escalated plan is even an eligible option for you. While you are waiting, maybe you can contact another facility and get that 3rd or even 4th opinion.

wdidg

Thanks LuvnTN, I am planning to get another opinion too. But concerned that time is running out to get the treatment started.

wbcgaruss

From what you presented here my opinion is are you confident in both facilities and doctors?

If so go with your gut choice of treatments and facilities.

But be aware this should be a one-shot deal.

You want to go through this once and only once and eradicate the cancer and come out cancer free.

You don't want to do this a second time.

Personally, I think I would feel more confident with the standard care.

I had 35 rad and 3 chemo but I guess with the 7 chemos it is probably the same just more doses.

Wishing You The Best on your decision.

Pray on it-There is Power in Prayer.

Take Care, May God Bless & Watch Over You

Russ

wdidg

Thank you Russ🙏

Quiet

Msk is a good choice. The doctors and nurses there are fantastic.

I see you indicate NJ. When I was treated at msk they worked with the NY Proton center (located in Harlem). not sure if that is a better option for you compared to NJ.