My Dad has Stage 4A BOT cancer. He is currently being seen at Mayo in MN and we are having a hard time deciding a treatment plan. The surgeon says his tumor is operable....but he suggests doing chemo and radiation with it as well. He said if we elected to not do the surgery the results could be the same with just a tad more chemo and radiation. We are at a lost to decide wether or not to do the surgery. Did anyone else have to come to a decision such as this? what did or did not sway your decision?

We are not doctors. When in come time to make a decision, the person with the most information is your doctor. That means ask him if he was your spouse what who you do?

That being said, in my opinion, if the Doc can go for clear margins and no chem/rad, then I would have gone down that path. But Being HPV+ BOT the chance for good outcome with just Chemo/Rads is favorable.

My doc said go for Chemo/Rads only. He's thoughts were high rads BOT and neck was his best chance of no reoccurrence. Lower rads may be enough but why risk it.

Having surgery will also delay the start of chemo/rads, and you are going to radiate the surgical area. Surgery also introduces it our risks.

Chemo/Rad is brutal it will consume 6-8 months dealing with various issues. Please start doing all of the suggestions you has read on these posts. Having cancer is a full time job. So is care giving.

My advice is post often. The more the fine people know about your situation the better the advice is.

Good luck and see on the boards.

Welcome to OCF. You have found a great site to help you with info and support. While we would like to help, this is ultimately up to the patient. I know its not easy to select the treatment plan. It may help to go for a second opinion.

Please understand that we would like to assist but this choice is not ours to make. The best thing I can tell you is to get educated from both the forum and main OCF pages and learn so you can help in making an informed decision.

Best wishes!

Has the Primary been tested for HPV?

Are there nodes involved?

Has Hockeydad says none of us are docs only battle tested and Mayo is a well respected place so he's in good hands.

He is HPV+ and there is lymph involvment. Well at least one of his lymph nodes is swollen so I guess we don't know if it's spread there or not. He had one last final talk with the Dr and he wouldn't tell him either way which he would choose. We are afraid of the risks with surgery. but afraid that the rads and chemo won't get it all indefinitely. This is an agonizing decision. Can anyone tell me why they decided against surgery? Or why they wanted the surgery. I know he's in good hands...but we just dont know which hand to choose.

Because Chemoradiation is just as effective killing this type cancer as surgery is, especially with HPV, plus the BOT is integral in swallowing, and can be impaired from surgery, and not function as well or at all, and be debillitating, and surgery can be reserved as a last resort, if needed. The extent of surgery is not really known until it's being done, and can be quite extensive due to the deep musculature of the BOT, and they would have to do the split lip surgery, if not by TORS or Micro laser surgery for small tumors. It's the patients decision too, not that I don't listen, and got several opinions for a recurrence, and wound up taking the 3rd offer that I thought would be the safest, with the best outcome, which was even more aggressive than the first two offers. It's your choice to make an informed decision between the offers, and you have to trust and have faith in your doctor, whoever you choose, and once committed, don't look back or 2nd guess yourself.

Good luck.

Most of us diagnosed with HPV+ SCC BOT Primary with nodal involvement do NOT have BOT surgery and FEW even are advised to have a Neck Dissection before chemo/rad.

Everyone is different. I had an unknown primary, most likely oropharynx, HPV+. My team felt that surgery first was the best bet. Their logic was, "If we remove 99% of the cancer, that's less treatment we'll have to do." I had a selective neck dissection and the tumors were extracapsulated so I had chemo/rads anyway but 30 rads and 6 weekly chemo infusions. based on the aggressiveness of my cancer, I'm glad they went in and got it.

Good luck, positive thoughts and prayers whatever is decided.

"T"

Ditto... if it's non HPV you should be okay without surgery, I would ask them to make sure they give your dad cisplatin or a cisplatin Erbitux combo, then because it is the gold standard. I know Erbitux is offered, however from what I gather it only works on people with certain markers. Cisplatin or carbo has a more potential issues with it but it is tried and true. best of luck,

Cheryld I don't quite understand what you are saying. If his tumor is not HPV, then he's fine without the surgery? His tumor is HPV+ and surgery from what we have researched is not the treatment status quo for most HPV+ tumors. This Dr at mayo is one of the very few in the world that will reccomend surgery for HPV+ tumors. So we decided against the surgery and will stick with the main stream trmt plan of 35 rad trmts at 70grys with 3 doses of ciplatin. Im frusturated that there isn't more evidence of a cure rate with the surgery and decreased amount of rads/chemo. Verses just sticking with rad/chemo trmt. I wish there was more research done into both trtmt method options so that people can look at concrete evidence when they are faced with this decision. I was frusturated the Dr just kept telling them the choice is theirs. I felt like with his expertise on this he should have steered them one way or another. Now we are always going to wonder what would have been if we stuck with the surgery route. Ughhh!!!!