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A couple of questions
One, I'm curious about NETs pain. Do they themselves cause pain or only when they are pressing on or blocking other things? I have lung NETs and occasionally have what I'd call a dull ache in the lung area on either side. I also have some rib pain on the left side only. It seems mine are awfully small and mostly in the wrong areas to create the pain I feel so I'm at a bit of a loss on what to think.
Two, looking at surgery next week with a 3 day hospital stay. I'm trying to create a list of what I'd like to get done at home before leaving and what to put in a bag to make the stay easier/more entertaining. Anything not so obvious to add to my list from those of you who've been there, done that? TIA!
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I can’t say for sure if NET’s cause pain but from personal experience I will say yes. I don’t recall asking my oncologist about it directly although I have mentioned the pain at previous appointments. I have had a reoccurrence of my NET and this time it’s in my right lung. I have had an occasional dull pain in my lower right rib area.
I can say when I first was diagnosed with NET in my thymus a couple years ago the one thing that made me get checked out was a squeezing pain I had in that area. I waited months before I ever said anything as the pain would come and go sometimes being more intense than others. When I had the NET in my thymus it was a sharp squeezing pain. In my right lung it’s been more of a dull pain.
Interesting. I get all that. And totally understand waiting to get it checked because it's so random. I've been telling my team from the start my lower left ribs hurt. They don't think it's related to NETs. At first they told me I might have thymus involvement but that didn't check out. How did they treat your thymus tumor and how long before you got another tumor in your lung? Will it need treatment soon or still in watch and wait mode?
They treated me with chemo and radiation to shrink the mass. My last treatment was in November 2022 and I had a very extensive surgery in February 2023. They wanted the mass to shrink because of its size and the proximity to my heart. The reoccurrence was discovered in February/March this year. I am currently getting injections once a month until my next PET in September and depending on the scan my doctors will reevaluate things then.