← Return to Proton Radiation vs Continue Chemo Only Decision Help/Experience with

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@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?

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Replies to "@lsheehy333, we recommend not sharing personal contact information on the public forum. It is safest to..."

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

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).