Hi klr, sorry about your Dad's diagnosis. It's fairly common for oral cancer patients to be confronted with treatment choices these days, because there are huge controversies and major developments, especially the discovery of the role of HPV, that are changing the field. I faced this twice. The first time I had to choose surgery plus radiation and maybe no chemo, or radiation and chemo. That's one of the big controversies out there, and surgery is becoming more common now that TORs offers a less invasive option in some cases.

The second time I had to choose between two chemo agents, Cisplatin and cetuximab.

I think it's so unclear which option is better, or whether any option is better sometimes, that docs want to leave the choice to the patient. That doesn't make it easier, I know. But my point is that your doc is giving you a choice because the side effects and risks vary, but the data puts the outcomes in equipoise right now. Unfortunately, there's no easy path to treat this cancer no matter what you choose.

Good luck, and keep us posted --

M

No - if the tumor is HPV - they sometimes forgo surgery becaus HPV related cancer responds well to radiation. Your comments were right regarding surgery not being status quo for HPV related cancers. Go with what your plans are though I would ask your team at moffit why they recommended surgery - maybe they are having more success with it.

[quote=Cheryld]No - if the tumor is HPV - they sometimes forgo surgery becaus HPV related cancer responds well to radiation. Your comments were right regarding surgery not being status quo for HPV related cancers. Go with what your plans are though I would ask your team at moffit why they recommended surgery - maybe they are having more success with it. [/quote]

I don't think there is a status quo right now. UW Madison (CCC) is routinely treating HPV + BOT cancer with surgery followed by radiation, and there seem to be quite a few people with BOT cancer on the forum who have surgery as a primary treatment followed by radiation with or without chemo. The NCCN guidelines don't appear to distinguish treatment options for HPV - v. HPV +, unless they've been updated or I'm missing something. http://oralcancerfoundation.org/treatment/guidelines.htm

My understanding is that most BOT tumours are large at diagnosis.
Surgery would result in quality of life issues and deficits in both speech and swallowing.
Current research and guidelines especially for HPV + ve BOT tumours , show good outcomes with chemo radiation alone.
Surgery is then a backup, or salvage , if treatment fails and /or the tumour recurs.
Please have no regrets. Of course it is Human to do so, especially if you do end up being one of the unlucky ones who do have a recurrence. I do sometimes wonder if we should have initially gone with a total Glossectomy instead of the curative chemo rads offered . But , hey , that's the way the cookie crumbles and we are definitely in the very small majority of people who suffer treatment failure.
Thinking of you and your Dad,
Tammy

We were told it is not normally recommended for surgery with HPV+ patients. There is a norm for it. Tammy is absolutely correct! Although a given doc may have their own way of thinking, but then I would want to know how many cases they have treated.
Kathy

Of the 4 cancer centers and 6 doctors I saw in NYC when diagnosed 1 doctor recommended surgery amd 1 thought he could get it with surgery but wanted to see more from my scans (and they did additional scans before recommending chemoradiation). Every one presents differently and has different characteristics to their tumor. It seems certain hospitals have switched from a surgery first treatment plan to one where the first line is chemoradiation as they have not seen a survival benefit from 3 treatment modalities. For me, they went with additional scans amd recommened chemoradiation due to the potential for tight margins. One thing that was told to me was to try to limit the treatment modalities to 2 instead of 3. So surgery and radiation or radiation and chemo. The ccc that I went with recommended chemoradiation as they thought there was a decent chance I would still need chemoradiation after surgery vs just rads.

Here's a link to a good article that may be helpful. It summarizes studies conducted at Mayo and other institutions on the emerging role of micro laser and robotic surgery, and the pros and cons:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3394169/

Thank you Mama. Another item of mention is with transoral microlaser surgery, it does not interfere with future surgery or radiation, if needed, and can be done more than once, unlike conventional surgery and radiation sometimes.

How are treatments going?

My team decided to try Radiation along with Erbitux. and not do the surgery. Due to the fact that the cancer was stage IV. with met to one node in the left neck at the time. it was explained to me that surgery and Radiothearapy had similar outcomes. Well treatment failed so surgery was what they suggested next. That surgery was a fail. cancer is still just in the head and neck, but very aggressive. Cancer was found.(and I asked twice to make sure I had it right)in 33 of 36 nodes that were removed from the ND. If we only had a magic 8 ball that really worked we could foresee complications and whether or not it will work. But that is just a dream. So get as informed as you can. get second opinions. and make the hard decisions. Best of luck to you. Shawn U.

Thanks Everyone for all of your advice and thoughts. It helps to know I'm not alone in being terrifed that we will not make the right treatment choice and regret it forever. I feel like given the info we got from both the Dr and through extensive research we made the best decision for us. I'm on my knees praying that this was the right one and I get many years left with my Dad.

That being said, he began his first cisplatin and rads trmt today. So incredibly hard to watch him go through this. I have cried I think as much as I can cry. But I am hopeful that he can withstand the side effects and we can just get through each day.The have already given him a slew of meds and the cisplatin hasn't even begun infusing yet. So I hope that all of these will help him. I am terrified and sad, but I have nothing else to do but wait and watch. Any advice on what I can do to help him is greatly appreciated. Keep your fingers crossed for us!