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Proton Radiation vs Continue Chemo Only Decision Help/Experience with
My mom was diagnosed Dec 2024 with adenocarcinoma of the GEJ (7 cm mass). Stage 4A (T3N3) with spread to distant lymph nodes (1 supraclavicular node was furthest lymph node spread). Started FOLFOX and Opdivo Jan 2025 (now only on 5FU and Opdivo due to bad reaction to Oxaliplatin after 9 cycles) and just had her first follow up PET/CT scan at Mayo Clinic in Rochester. She had a complete metabolic response and we cannot see the main tumor or lymph nodes on the PET/CT. The oncologist said this was a “phenomenal response” and she is in “a very rare group.”
She is eligible for proton radiation but the side effects (especially long term ones) are scary. The radiation field would be large in her case (main tumor, supraclavicular, peripancreatic, periaortic, retro peritoneal, perigastric lymph nodes). The other option is to continue maintenance chemo and immunotherapy since it’s been working.
The radiation oncology and oncology team thinks both are good options and the decision is up to my mom. We got the idea that proton radiation MIGHT lead to more sustained long term control of the sites. But we also have to weigh side effects/quality of life. My mom is very active (runs, plays tennis, hikes).
-Does anyone have any advice?
-Has anyone had to make a similar decision?
-Would anyone who has had proton radiation and been at a similar stage and lymph node spread be willing to private message or talk?
Thank you all and wishing everyone the best!
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I'm 6+ yr survivor of Stage 4 ESCC. Since my initial diagnosis in 01/2019, I have undergone extensive photon ( IMRT/SBMRT) radiotherapies along with several cycles cheotherapies initially with Folfox, then in 2021 Folfox+ Keytruda which precipitated a catastrophic adverse immune response which required 3wk hospitalization followed by 2.5 months in-patient rehab at the height of the COVID pandemic. Pre-discharge CT-MIPs scans showed that i experienced an excellent clinical response. I resumed second line maintenance therapy with FOLFRI for multiple cycles and my serial scans showed continued disease control with the last three Ct-MIPs and PET scans showing no evidence of disease.
Unfortunately, in April 2024, scans demonstrated that I had suffered a recurrence of disease with new nodes demonstrated in my left upper mediastinal area near my left main bronchus, pulmonary artery and aortic arch, abdominal, para aortic, retroperitoneal and pelvic areas, Due to prior radiotherapy indiced fibrosis, further radio therapy of any type was contraindicated and surgical removal was recommended. I underwent SBMRT, which I completed on 12/31/2025, to address the abdominal and pelvic nodes with a good clinical response.
After a brief recover period I underwent an aortic attempted surgical removal to remove the medistinal nodal mass via robotic assisted surgical thoracotomy (RATS). Due to excessive radiation induced fibrosis, the nodes were inaccessible for removal as they were enmeshed in a fibrotic web that involved my left main bronchus, pulmonary artery, aorta and esophagus. I'm currently recieving all of my treatments at Duke University's Cancer center. As they or UNC's Cancer Center do not offer proton beam therapy, I'm exploring possible highly focused Proton Beam therapy at Emory and in Knoxville as this seems to be the most viable option to treat my oligomeric disease. I am also exploring relative newer technologies in clinical development for problematic nodal ablation such as such as MRI-guided histotrypsi, or microsound guided intracellular lytic bubble formation.
As always, I try to maintain a mental attitude in my fight with my disease despite the occasional set backs. I'm currently 72yo. I intend to live into my it's and beyond with God's grace and on-going advaces in therapies for ESCC. I don't intend to die from ESCC.
I wish you the best of luck in your treatment of your EC. Keep fighting despite the occasional setbacks you may experience! PMA, all the way, every day!
Thanks for sharing