- This topic is empty.
January 13, 2014 at 7:40 pm #21743triciachesParticipant
I recently had my 2nd melanoma removed. The first was in 2009 on my left shoulder, the 2nd on my lower left leg. After wide exsision, SLN & margins were clear. My official diagnosis statis is “Stage 1B” (T2a NO MO)
I wanted to find out what the standard protocol is for both imaging tests (PET, etc.) as well as treatment protocols others are using.
I fully appreciate that, at this point, I am considered early stage…and I am profoundly thankful for that. But given that I have now had “2” primaries, I would sleep better if I were given a PET scan or something to put my mind at ease!
.January 13, 2014 at 11:49 pm #63351tbeauParticipant
Welcome to the forum. I’m sorry to hear about 2 mels! I am also a stage 1b and I too wanted further testing, as it seems as though keeping your fingers crossed and hoping it hasn’t spread is not being proactive enough. I believe the standard protocol is not to have a baseline CT scan for stage 1b. I don’t know if it is the best protocol but I guess the reasoning is that it exposes you to so much radiation.
That being said I did have a CT scan about a year after my diagnosis as I was having a lot of pain in my groin area and my mel was on my leg. It turned up a very small spot on my liver and then I had an ultrasound and it was determined not to be mel.
I am also thankful that at this point I am an early stage but too I strive for something to put my mind at ease. Even the CT scan hasn’t done that. Instead I now wonder if the spot on my liver is mel. This disease is not for the even mildly paranoid to say the least.
I am sure others will post with their experiences and thoughts. Take care.January 14, 2014 at 2:46 pm #63352triciachesParticipant
tbeau- Glad I’m not the only one that feels this way!! Do they check your LDH periodically? If so, (if you don’t mind sharing) what have your levels been? Mine was “219”…January 15, 2014 at 12:16 am #63353tbeauParticipant Tricia
I have only had my LDH levels checked when I’ve had visits with the oncologist. I would share them with you but I do not know what they were. I’ve only been to the oncologist for melanoma 3-4 times. They’ve only said that the levels are normal.
I definitely think that a baseline test of some sort would be helpful and would go a long way to help with putting your mind at rest. Unfortunately, the medical profession does not agree.January 19, 2014 at 4:13 am #63354kab07011Participant
I am stage 1B and have never had a scan, besides a lung x-ray before my WLE was done in 10/09.
From what I understand LDH levels are not good for determining if the mel has just slightly progressed into a small tumor, but if the LDH levels are off it means that mel has progressed greatly and you would be feeling other effects from it. I wish there was a “blood test” for melanoma. Hoping in the future!January 20, 2014 at 4:38 pm #63355Webbie73Participant
One thing my dermatologist told me when I was diagnosed with stage 1a Melanoma was that early stage melanoma will not show up in scans and blood testing is for late stages of melanoma. It stinks that there are no tests for us early stage folks but that is the way it is. Maybe someday in the future they will come up with a blood test. In the mean time why exposé yourself to radiation and the cost of the scans when the results will not show metastatic melanoma?
- The forum ‘Melanoma: Newly Diagnosed – Stages I & II’ is closed to new topics and replies.