I have recently been diagnosed with stage 4a SCC of the maxilla & nasal cavity. I've already seen several doctors, most recommend surgical resection, reconstruction, and radiation. I've decided I'm not going to go through surgery and reconstruction. I'm very interested in proton therapy, has anyone had this type of cancer treated using proton therapy only. If so please let me know how successful it was and if there has been any recurrence. Thanks for any insight you can provide.

Thanks for any feedback.

Welcome to OCF! Selecting a treatment plan is a difficult decision. Unfortunately with our type of cancer, we often do not have much of a choice if we want to eliminate the cancer and survive. Physicians at comprehensive cancer centers (CCCs) work together using a team based approach. They will determine treatment plans by using the NCCN guidelines.

When first diagnosed with cancer its not easy to figure everything out. Many times Ive seen patients decline when they have a choice on getting a feeding tube or port. These tools help make treatments easier to get thru. Maybe its because they feel like their life is so out of control that when they finally get something to make a choice they say "NO"! Im hoping you will listen to everything all of your physicians have said before making a decision to go with proton therapy instead of the conventional treatment plan. When a patient is Stage IV they shouldnt wait too to start getting treated.

If you use the SEARCH function in the upper right corner of the forum you can find many posts about proton therapy. Not many members have had this type of radiation, its usually IMRT. Im not sure what the reasons behind this are but it could be its not as effective on our type of cancer. Thats just a guess. In the results from a search you will find many posts about proton therapy.

Heres a link to the Head and Neck Cancer NCCN Guidelines to read about treatment plans in detail.

NCCN H&N Cancer Guidelines

PS.... PLEASE click on the tiny flashing envelope next to your My Stuff tab. That is located near the top of the page, in the middle of the menu bar.

Thank you!

dmbart,

I had proton radiation for a local recurrence in 2013, and was my last, hopefully. It's highly precise, and more radiation goes to the tumor bed, and less to nearby structures and skin, and no exit either (hair loss). There were restrictions for its use in head and neck cancer, like prior therapy failing, but some head and neck cancers can have it due to critical areas involved and or in clinical trials, but that could have changed in this fast changing field.

The is also new Proton Therapy called IMPT, and Pencil Beam, which has the ability to change radiation fields, pretty much like IMRT does, which cuts down on treatment time, changing nozzles.

Good luck

Thanks Paul, hopefully there will be no recurrence. I've heard that proton is suppose to cut recurrence rates in half. I'm scheduled to start my sessions later this month.

Good luck with your treatments, dmbart! If you have any questions, ask here, besides with your medical team.

I wanted to post an update about my experience. I was diagnosed with stage 4a SCC in march 2016. The doctors I saw recommended a partial maxillectomy, by that time I had already lost 6 teeth so the maxillectomy would have been pretty extensive and I decided not to have surgery. I had heard about proton therapy and did my research into various treatment options and with 2 NCIC ENT cancer surgeons and 3 proton therapy oncologist. All recommended surgery followed by radiation except 1 of the proton therapy organizations. I was very impressed with the doctor at this proton facility, he spent about 2 hours explaining his background treating this type of cancer, what areas would be treated, and answered all of my questions, so I choose this facility for treatment. I knew going in that this type of cancer had a fairly high recurrence rate, 40%-60%, for which I was told that if it did recur the area could be retreated.

I went through 42 proton therapy treatments, my post treatment MRI showed the sinus was full of something, probably infection, so they couldn't see if there were any signs of the tumor. I had another biopsy in February 2017 with the original ENT surgeon, which showed cancer cells still in the maxilla but the sinus looked clear. I contacted the the proton doctor about treating the area again and he said he would have to check on it. I contacted him several times to see if proton was still an option, however he never responded and I eventually gave up. Shortly after the February biopsy I developed a knot under the skin on the side of my nose and a blister on the skin that started oozing puss. I was on 3 different oral antibiotics but it just got worse, the surgeon said he believed the underlying cause was the cancer and it would not heal properly until the cancer was removed. At this stage of my life I'm still not considering surgery, which is likely to be more extensive than originally thought. I am considering chemo since for SCCHN chemo is require before you can be treated with the new immunotherapy drugs.

The point of this post is do your research before deciding what treatment option(s), if any, are right for you and thoroughly check out the doctors you will be working with. I found one who told me what I wanted to hear to get me in the door but, from my perspective, forgot about me once my original treatment was completed.

Thanks for your update and detailed explanation of how thoroughly you researched before selecting your medical professionals and treatment plan. Im hoping at this point in time you have done well with your recovery and are able to get back to your regular routine.

My husband was in a phase 1 immunotherapy trial in 2014. Prior to that he had radiation and two doses of Cisplatin (the third dose was not given because he developed deep veined thrombosis in both legs). Unfortunately for John, the trial did not help him.

Are you being treated at a comprehensive cancer center? The reason I am asking is that I wonder if there is still a chance for you to be present at your own tumor board meeting where you can actually ask questions about your treatment and get answers from doctors from various disciplines. One forum member, Donfoo, did just that. If you search his name, you will be able to read his posts.

If you are going to go the immunotherapy route, I strongly suggest that you speak to an MO and find out what the response rate is for head and neck cancers. There are all kinds of statistics available from drug trials. That way you will know better if it is the right treatment at this juncture or what kind of chemo is best to start with.