Proton Radiation vs Continue Chemo Only Decision Help/Experience with

Hi,
I have had both proton and photon radiation. I was diagnosed esophageal adenocarcinoma stage III ( T3N1M0) at the GEJ junction in July 2023. I had 28 proton chemoradiation with FOLFOX x 3 cycles. Afterwards they found a supraclavicular node that seen on work-up for esopahgectomy. I then had salvage chemoRT w/ weekly carbo-taxol (Carboplatin and Paclitaxel) per CROSS regimen (completed 12/28/2023). I am currently NED 1.5 years since the last treatment. I am on active surveillance to see if the cancer comes back. If it does, maybe I'll get the surgery. I have not had immunotherapy.

I didn't notice much difference between the two radiations. They say that the proton is more focused so that it does not injure the heart and lungs. Could you have two different types? Alternately, can they focus the beam first on the esophagus then on the supraclavical node? I am not sure if they can, but that might be an option.

I too am very active. I teach indoor cycling and yoga and love outdoor bike riding. This ordeal has affected my energy level. I get very tired.

My situation is a little different than your mom's but I'd be happy to chat.

@lsheehy333, we recommend not sharing personal contact information on the public forum. It is safest to share personal contact information using the secure private messaging function.

@ctinad22, you are in good hands at Mayo Clinic. By sharing here in this discussion, you will get responses from many members, like @lsheehy333 and others like @dtaylor75 @puprluvr @lori57216 @dsh33782 @davidwrenn and many more.

It is fantastic that your mom has had such a great response. But now you're in that challenging spot of having to choose between 2 treatment options that both offer good options. How the treatments are delivered and their side effects differ. It can help to hear from the experiences of others and how it was for them.

Your wise to think about your mom's preferences, lifestyle and quality of life. How many proton treatments are being suggested? Would chemotherapy and immunotherapy be options if needed at a later date?

Thank you Colleen. I didn't know how that worked. I appreciate you keeping me safe.

My case was not as progressed as your mother's. Mine was confined to the esophagus and staged as III. I had only chemoradiation and forewent the surgery. However, I'm one of the few who've had both types of radiation - IMRT and proton. AFAIK, the choice now is either IMRT or proton. I had one week of IMRT and 4.5 weeks of proton, so I can compare the two. Take the proton is all I'll say. I'm a little puzzled about long-term effects of proton. I've read about some brain effects like edema, but those are almost vanishly small. I had fatigue, skin peeling and late onset esophagitis. As a consequence, I have scarring and decreased lumen, which can be corrected by dilation, or, if necessary, surgery. To me, it's a small price to pay for the dramatic results I had from treatment. Also, my age is a factor. I'm 86 this year and face hip replacement if the cancer treatment is successful. It happens that my former wife died of EC. (Hers was adeno at the junction; mine is squamous.) I observed her recovery and rehab and I didn't want to spend the time in battling the aftereffects of the surgery. I'm very happy to hear of your mom's remarkable response to treatment. She sounds like a champ and wish you the very best...

My husband just finished three weeks of proton radiation. Not exactly the same situation, but I just wanted to share that he had very minimal side effects from the proton radiation. Best of luck to you and your family.

I had proton radiation treatment in Knoxville, Tn. along with 2-2-1/2 hrs. of chemo every Friday. I was lucky to not only have Stage 1-2 and not have any in the lymph nodes but also to find "on my own" that Knoxville had a "proton" radiation treatment center!! I was all set up to have "photon" treatment when I found out about the proton center 8 miles from where I was living!! The photon oncology people NEVER mentioned it!! The treatment went very well and the personnel at the center were wonderful! I of course did experience fatigue after both treatments but all my scans have been positive. I would absolutely highly recommend PROTON treatment if you have access to it. In finishing after moving to Brunswick, Ga. and some continued "testing" I was found to have Barrett's with some dysplasia and I was told I would need cryoablation! Unfortunately there was nobody in Brunswick who could do this procedure. As a matter of fact it is "very" specialized and there aren't many gastroenterologists who can do this. I was very lucky in that I found a WONDERFUL "lady" Gastro. specialist in Jacksonville, Fl. at the Mayo Clinic who could treat me. I have had endoscopies to see what was going on and cryoablation when needed. My images and biopsies have been clear and as that happens each time my treatments get pushed out a bit farther so if Barrett's is a concern I would "try" to find a specialist who can perform cryoablation. My Dr. Swathi Eluri and her whole medical team at Mayo have been wonderful!!! My "battle" with this God awful disease started with surgeons (met with 4 of them) that wanted to "cut me" right away. After reading about the length of the surgery and the recovery from it I said "NO WAY"! I was 75 at the time and I told them if I could get 3 more years doing radiation and chemo treatments and have some good quality of life that's where I am going. At the end of Sept. I will turn 78 and "knock on wood" I am feeling pretty darn good and am pretty active. As a matter of fact I am going to start golfing again and am actually tihnking of signing up for slo-pitch softball!! I wish you ALL the very best in your fight against this "monster" we face and hope you win whatever battle YOU choose!!! I know; long winded but I felt some of you out there needed to hear my tale!! Thank you.

5 weeks of proton radiation was recommended (so 25 treatments in total) and the proton radiation would be in conjunction with some type of chemo drug it was suggested maybe "capecitabine as a radiosensitizing agent." Yes she is at a crossroads of basically do I go for the more aggressive route of radiation for perhaps a more sustained response of keeping the cancer "at bay" but also perhaps lowering my quality of life or keep doing the maintenance chemo which has been overall tolerable and we know is "working" thus far (but also we know it will not work forever...) She was very intimidated by mention of the side affects of proton radiation such as extreme fatigue, loss of appetite, esophagitis, trouble swallowing, weight loss possibly necessitating feeding tube placement, skin issues, lung inflammation, cough, shortness of breath. Late onset effects such as scarring of lung tissue, chronic shortness of breath, pulmonary fibrosis, radiation pneumonitis, ulceration or narrowing of the esophagus requiring dilatation. Permanent skin changes, esophageal damage, liver damage and rare risk of heart damage.
We know everyone will react differently but just trying to get an idea of what people experienced and if it really did lower their quality of life etc., The radiation oncologist said that she would receive an aggressive regimen in a large field as all areas of previous involvement would be targeted...(so main tumor in the GE junction and all of the areas of lymph node involvement mentioned in my original post).

I was diagnosed Dec 2018 at stage 3 esophageal cancer because one lymph node was detected. I had 25 rounds of proton radiation with the only side effects of fatigue which I battled with walking at a local gym and using a treadmill at Hope Lodge in Rochester. I also had once a week chemo for 5 weeks.
I had surgery April of 2019 at St Mary’s. I’m a 6 plus year survivor who is thankful to God and greatful to Mayo Clinic!

I was diagnosed in February 2024 with stage 4 adenocarcinoma at the GEJ 4cm mass with spread to lymph node in my neck. I also started on and was only was able to stand Folfox and Oxaliplatin and for 8 cycles. I also had a complete response with clear CT scans for the past 4 times.
I am currently on Opdivo and FU5 for maintenance for about 30 cycles.
I have never been offered Proton therapy. Just a question as to why they are offering Proton and what benefits it would have?

I would ask why not proton. Proton and IMRT seem to be equally effective, but proton has fewer side effects, and not just the transitory ones. Since it expends its energy in the tumor, rather than tearing its way out of your body, through your heart, for example, it's superior. I had one week of IMRT (photon X-ray) and 4.5 weeks of proton. There's no comparison in side effects...