› Forums › Cutaneous Melanoma Community › Clear PET/CT but diagnosed stage IV
- This topic has 7 replies, 5 voices, and was last updated 6 years ago by
MelanomaMike.
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- May 30, 2019 at 1:18 am
Hello! I’m relatively new to this forum. My husband was diagnosed with stage IV melanoma last month after having a small melanoma on his neck removed by wide local excision in 2016. At that time they told us no further treatment was needed and we went on our way. Earlier this year he had a spot on his abdomen that looked like a cyst, after asking the dermatologist take if off-we thought it was growing-we found out this diagnosis. He is 33 years old and we have an 9 month old daughter. At the first meeting with his oncologist his PET/CT scan came back clean but he is starting Keytruda next week. The first oncologist we saw made it sound like this diagnosis was a death sentence. We got a second opinion in Iowa City and really liked the doctor there, but when I asked about his prognosis I was quoted the standard scary survival rates of 35% after 5 years. Long story to ask, why are we being so freaked out if the cancer was removed and the scan was clear? I get that there can be small cells that the scans don’t pick up right away. But isn’t it a really good thing that his scans were clear? Looking for some encouragement as we go into his first treatment next week. Thanks!!
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- May 30, 2019 at 3:30 am
Oh, Hanaln, I know exactly how you feel and I’m so sorry you have to get on this road with all of us. The whole situation just knocks the wind out of your sails. I too progressed straight from Stage 1 to Stage 4, two weeks after delivering my daughter, and was only 32 at the time (I’m 33 now). It’s beyond a lot to take in, but don’t worry you both will adjust over the next few weeks to this new normal and you’ll start to feel better again (don’t worry, I promise that’s true!).There are a few pieces of advice/insight to take into consideration:
– Do whatever you can to see a Melanoma Specialist (preferably at a Melanoma clinic, I believe you can find a list of all those sites on this website). This is VERY important. Things are changing rapidly in the field of Melanoma treatment and it’s more important than ever that you see a specialist.
– The fact that your husband is NED is VERY good news. One thing we do know is that immunotherapy works better in people who have less disease…so no signs of disease means that immunotherapy should work even better in him!
– I have been Stage 4 for 15 months now and never once was I given a prognosis — not when I had a lemon-sized brain tumor, not when I met with my radiation oncologist and not when my lung tumors started growing a bit while on Opdivo and we had to change treatments. I’m doing very, very well right now with no signs of active disease and feel like I have every reason to be hopeful and your husband does too! So, I always wonder about any doctor who gives a prognosis. Each patient is different and treatments are changing so fast that I don’t think any doctor could give a proper prognosis based on what we know today. So, PLEASE try to take that with a grain of salt.There is SO much great information on this site and so many kind, knowledgeable people here. I’m sure they’ll all chime in with everything they know but we’re all in this with you. Ask as many questions as you need to! The people on this board often answer my questions better than any doctor and, in turn, my doctor is always amazed with the insight and questions I come in with.
Take care of yourself and keep us posted!
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- June 1, 2019 at 1:10 am
Amanda,
Thank you so much for your advice. I can’t imagine going through that with a newborn baby. You sound like an extremely strong and kind woman. We have found a melanoma specialist and do feel good about the team we have now. We go to his first treatment next week. I’ll be thinking of you and sending good vibes your way!
Holly
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- May 30, 2019 at 4:20 pm
I’m not blaming you for wanting to know more, but if you pin the doctor down on offering a prognosis, the only facts they can offer are the statistics. There are average survival rates for a reason. Fortunately, your husband seems to be towards the high side of that average since he has no current signs. Plenty of people have survived for many years after the stage 4 diagnosis and some never have to deal with it again.My suggestion is to try not to focus on the prognosis and possibility of negative outcomes in the future or you might miss out on the good things now. Focus on treating what you can treat, kinda like the AA Serenity Prayer.
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- May 31, 2019 at 8:16 pm
This has been my mantra since being told I was stage IV last July: “My diagnosis is not my prognosis!” Take things one step at a time. Yes, it is a very good thing that his scans were clear. Now, you should find a melanoma specialist and decide what the next steps, if any, are. And come here if you have any questions or worries (those, too, are normal).Good luck!
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- June 2, 2019 at 4:31 pm
Hi Hanain, that is truelly great news for your hubby! God only knows Not having active, relentless tumors pushing against nerves or squeezing arteries like a Anacanda stopping much needed blood flow, i pray for the day im NED at any stage!
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Tagged: cutaneous melanoma
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