In February of 2020 my husband was diagnosed with well-differentiated/dedifferentiated gross retroperitoneal sarcoma. He had surgery lasting 6 hours, and, fortunately the operation was a success. He had CT scans every six months and until this month these were always clear, showing no return of malignancy.
This time it was a very different story. The scan revealed that the original disease in the retroperineum had returned, and that there was a secondary on his lung. He was discharged by the surgical team, which had been following him as an outpatient, and referred to Medical Oncology. The result was that we were told that the disease was now "incurable" and that the only possible therapy was chemotherapy, which very toxic, and of limited effectiveness. I am heartbroken and devastated. I manage to 'hold things together' most of the time, but sometimes break down in tears. My husband is now 81, but seems a lot younger. He is active both physically and mentally and a loved husband, father and grandfather. I do not know how I can ever live without him (I am 75 and we have been married for nearly 50 years).
Does anyone have any knowledge of radiotherapy, targeted therapy or immunotherapy for treatment of retroperitoneal sarcoma which has spread? At the moment there seems to be only one secondary tumour. However, the hospital have put him on 'surveillance' until April this year, when he will have another scan to see how quickly the tumours have grown/spread. I am very fearful that by that time the disease may have spread to the brain and/or the liver. I used to hug him a lot, but now I tend not to do this, as this makes me cry. I cannot bear the thought of losing him. He is presently very fit, and symptom free, and, I believe, in denial about the seriousness of his situation.
Would it help to seek a second opinion?
GMswife
