Thank you for the replies, it is very much appreciated. We went to OHSU Knight Cancer Institute which is a comprehensive cancer center in Portland, Oregon. Our physician is the assistant professor of Head and Neck Oncologic surgery at OHSU and is the Director of Head & Neck Clinical Trials there as well. He said that OHSU just completed a trial that said the outcomes of surgery vs. radiation as the primary treatment were almost identical. But for our own peace of mind, I have contacted the Otolaryngologist who first diagnosed my husband to get his opinion as well. Dr. Funk was the head of Otolaryngology at the University of Iowa Hospital and specialized in oncologic head and neck cancer before he moved to Oregon to semi-retire. I value his professional opinion very much.

Christine and Stef, your advice of not rushing into a plan has made me feel so much better. I only want what will be the best outcome for my husband, so I will be making plans for a second opinion. He did receive good news from the dentist today- all of his teeth are great except for a bottom molar that will need to be removed because it could cause trouble down the road. They took impressions to fit him with fluoride trays so he can get fluoride treatments everyday after radiation.

Thanks again everyone. I feel so much better conversing with people who have a great knowledge of this and offer great advice. I will keep you posted!

Jennifer

Regarding surgery post radiation question - is it possible that the surgery the oncologist was referring to was a neck dissection for lymph node involvement?

My understanding is that with HPV+ tumors that decision can be made after radiation/chemo. Often the lymph nodes respond completely to tx and that surgery will not necessary.

My treatment for tonsil cancer, and two lymph nodes, in 2009 was adjunct chemo, followed by Chemoradiation for preservation of swallowing and function, which was popular at the time instead of the morbid split lip surgery. If there was residual cancer or it recurred then they would do "salvage surgery" or "surgery as a last resort" as it's called to the primary or lymph nodes where there was radiation.

Over the years, I've heard of both, upfront surgery before treatment, which I believe MSKCC was doing before undergoing Chemoradiation in 2009, and mine at Mt Sinai, both top CCC, were doing Adjunct and Chemoradiation, and surgery as a last resort, and other variations.

Mt Sinai were also one if the first to do TORS, which I inquired about, but was told it I couldn't do it due to the number of cancer areas involved. I think at the time, TORS was just for tonsil or BOT primary with no neck dissections, and may have since changed. At a later time, another possible recurrence, I was told I couldn't have TORS because of my limited mouth opening from radiation

Subsequently, I needed salvage surgery to my neck for a recurrence. As far as the neck dissection, it was supposed to be a modified radical neck dissection, but during surgery, everything was all twisted up from radiation, so I had a radical neck dissection, which removes the lymph nodes level ll-V and the vein, nerve and neck muscle.

There are positive and negatives with both, one negative being radiation does make structure changes as mentioned, so surgeries can be a little more difficult, and with TORS, Microscopic Laser Surgery, and Endoscopic surgery, the idea of surgery being upfront seems popular again too, and heard of other variations with no chemo, lesser radiation, etc. depending on other negative or positive features. .
.

Jennifer, travellottie brought up an excellent point. The surgery after rads can sometimes not be for the tumor but a neck dissection to remove lymph nodes. I suggest you confirm the surgery specifics with the physicians who are treating your husband. It could be exactly what travelottie suggested.

Here is a list of the countrys top 69 cancer centers (out of 1500) . On the left column you will find the type of cancer center either basic, clinical or comprehensive. This tool may be helpful to you in seeking out another opinion. Since OCF has members from all over the world, finding someone who is near your local area to pass along doctor info may not happen right away when you need it. Plus, what one patient thinks is ok another may not and its that particular patients opinion, not scientifically ranked. OCF doesnt rate doctors or hospitals (other websites are dedicated to this) but we do go by the NCI list of the top facilities in the US. There are also organizations out there that help cancer patients with free or low cost air travel and special lodging for cancer patients who must travel for treatments or other opinions. Ive put both links below in case you (or anyone reading this) needed further info about these things.
Best wishes!!!

NCI top 69 US cancer centers

Main OCF Website... Financial Assistance including Air travel/Lodging

Travelottie and PaulB,

Thank you for your input and for sharing your knowledge. I did call and ask about why the surgery, if needed, would be done after treatment and they told me exactly what you guys did. It would be a neck dissection since the nodes in level ll, lll, and lV are involved. There was so much information given to us in our consultation that we are still processing most of it.


ChristineB,

Thank you for the list of cancer center and the OCF website link. It will be very helpful! I was very happy to see that our cancer center was in the top 69!

Thanks again everyone for your input...I am learning so much from all of you and am grateful to have people that I can ask questions and get advice!

Jennifer

Sounds like it could be a "planned neck dissection," which is done after treatment no matter what the outcome is with Chemoradiation being three nodal levels are involved vs watch and wait approach.

Good luck

Jennifer,
It is so much information; you may want to use your cell phone and record audio from office visits. I do that when my partner can't join me as sometimes it is too much detail.

Your husband is so lucky to have your support and care! Wishing you both the best through this journey.

Stef

Always ask the doctor before recording anything. Some physicians are not willing to have their sessions recorded. Others are only too happy to accommodate the request. Its a great way to be able to go back to review everything you might have missed.