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July 13, 2013 at 8:11 pm #21447Sandalwood36Participant
Just curious if anyone can tell me the ‘standard’ protocol for follow up after receiving a Stage IIB diagnosis (deep tumor but no ulceration or lymph involvement).
Am wondering if Bob’s stomach tumor could have been found while it was still treatable if periodic CAT or PET scans had been done during the 3 years between Stage IIB and Stage IV diagnosis.
He saw his derm and onc religiously, but all they ever did was examination and blood work.
As a result his stomach tumor was only discovered after he became severely anemic due to internal bleeding.
Thoughts?July 13, 2013 at 9:57 pm #61794tbeauParticipant
Hi Sandalwood. I am so sorry for the loss of Bob. I have followed your posts and they have brought many tears to my eyes. You were a wonderful caretaker. I am a Stage 1b and I do not know the normal protocol for a Stage 2b but I know that most in 1b do not receive follow up CT or PET scans unless something comes up to warrant the scan. I think you bring up a very valid point and I’m sure there are many here who are more qualified than myself to weigh in on your question. You are in my thoughts and prayers.July 14, 2013 at 6:55 am #61795msue5Participant I was Stage 2B with 3mm tumor and was followed with alternating Pet/Ct and Ct of chest, Abd and pelvis every 3 months. That was going to be for 2 yrs but had groin node recurrence in less than a year. At the time it was still controversial(2010) and was not being done by my Melanoma Center. The tests were ordered by my Medical Onc who was in private practice. BTW I found the enlarged node myself in Dec after a NED scan in October. If his was in the abdomen I doubt he would have found it himself. Don’t know if this is helpful because I don’t want you to think If only we had……etc
Mary SueJuly 14, 2013 at 6:11 pm #61796Catherine PooleKeymaster
Cat and Pet scans are normally reserved for a baseline reading for stage III. I am assuming that was what the doctor was considering. It is hard to tell if these had been done early on that they would have prevented the progressions of disease. Hindsight is so difficult with melanoma, I do it a lot when I think of patients but it isn’t helpful now unless it helps someone else. I am sure you are reprocessing the journey you’ve been on and what could have been done differently. I’m sorry that you have had such a loss, I know how it feels. take good care of yourself.July 14, 2013 at 10:55 pm #61797AnonymousGuest My Rachel was originally technically diagnosed as Stage 2C. We did base line scans for PET, brain MRI and from the neck down CTs. Pet scan were scheduled for every three months.
She went to stage IV at the very first follow-up Pet scan. There was a thickening in her stomach seen in the subsequent CT but I recall the oncologist saying it’s fairly hard to spot melanoma tumors on/in the stomach until they’re larger and we would just watch the area on subsequent scans. So, unfortunately, I’ve a feeling the outcome would have been the same.
Yeah, I can’t tell you how many times I’ve found myself wondering ” If we only did this….”. It’s a natural thing to do. But please avoid or try to catch yourself doing it especially if you start beating up on yourself. That does no good.
It takes time but you will feel better and those thought patterns will slowly fade. But it takes time.
JeffJuly 15, 2013 at 1:05 am #61798Sandalwood36Participant
Thank you all for your input. As you suspect, I am definitely second guessing the care that Bob received before he was diagnosed Stage IV and we turned to MSKCC. I am a computer programmer and in hindsight,it just doesn’t seem logical to me that he wasn’t more closely followed after his original diagnosis. We were totally blindsided when the melanoma was found in his stomach after 3 years of being told that he was NED. I’m certainly not a doctor, but I believe that annual or semiannual scans might catch metastasis at an early onset, when it is more treatable. Thank you all for your support and prayers, and God speed to all that are still battling this devastating disease. Rest assured that ‘Team Bob’ will continue our fund raising efforts until a cure for melanoma is found.
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