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New to this, and worried about my Dad :(

New to this, and worried about my Dad :(

Posted By
MrsBeeks
11/26/2019 3:49pm
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Replies: 2

Hi there! I am very new to this crazy, worrisome thing called melanoma, and thought that this might just be the best place to get periodic advice and support. :) My father, was diagnosed with Stage 3 Malignant Invasive Melanoma in April 2019, it had spread to his lymph nodes on the left side of his neck. He had the melanoma removed, and also had 55 nodes removed from his left neck, and only one of the nodes tested positive for melanoma, so, the doctors were super, duper confident that all would be well. He was sent home to heal, and put on a Immunotherapy Treatment of Nivo, biweekly, with scans every 6 weeks or so. Shortly after he had his first couple of treatments, a lump arrived on the right side of his neck, which the Dr. figured was cancer, but that it was probably psuedoprogression, that she said is fairly common, but she would send him in for another scan to be sure. In the meantime, the lump died right down, and the ct scan showed that it was gone completely by the time it was done, however.........spots were now detected on both lungs. :/ They assured us that it was probably still psuedoprogression/and/or something called histoplasmosis, that is common for people in rural areas, especially farmers to have in their lungs, but, we went back in for another scan to be sure. Fast forward to today......we got the results of the scan, and the spots in his lungs are completely unchanged, BUT, now he has a spot on his liver. :/ Once again, the doctor.......a different one this time.....assured us that as far as they were concerned the results of the scan were pretty good, and that we shouldn't worry about the spot on his liver.............which seems super wierd. So, I am confused at this point........the Dr. seems optimistic and keeps saying there is nothing to worry about, but with all these new spots showing up randomly, it has indeed got me super worried. Has anyone ever gone through this type of experience.......is this what psuedoprogression looks like? Thank you for any advice or support you can give. :)

Hi there Mrs Beeks, when stuff pops up on scans it is normal to be concerned but without a needle biopsy and pathology report there is no way of knowing what if anything is actual going on with your dad. Small stuff can show up on a scans and if it doesn't change (grow in size) from one scan to another or is really small (few mm in size) then a lot of oncologist will watch and wait and depend on any scan changes. Usually if scans show growth in tumor size from one set of scans to another then the oncologist will want to do a biopsy to make sure that they are dealing with melanoma. Psuedoprogression is based on a confirmed melanoma tumor growing while on treatment like immunotherapy early in treatment, then on follow up scans the tumor starts to shrink. This was first reported in the early days of using Ipi (yervoy) where some early patients showed progression on scans based on something called recist criteria but they felt better and the oncologist decided to continue treatment beyond recist criteria, that would normal mean stopping treatment. On future scans some of these early patients started to show shrinkage and the term psuedopression was used to describe this small group of immunotherapy patients. Good luck with your Dad!!! Ed

Thank you so much! I feel better after reading your note, and I had a little chat with myself about being a little more patient and more trusting of the Doctors......he hasn't been on treatments all that long, and in my head, I know that things aren't going to just immediately disappear.....but sometimes my heart gets ahead of my brain. :/ I think I expect the Doctor's to jump and biopsy every single little spot that pops up, and I know that, that isn't reality.
Thanks so much for your information, and for making me feel a little more confident. :)