I’ve already posted an update about my liver tumor because my doctor emailed me my MRI results. I was grateful that he emailed me because there was a bit of a delay between my MRI and my follow-up appointment. Usually, those appointments are within a week of each other, but there were some delays in getting my appointment scheduled. So having that email so I didn’t have to worry or stress for all that time was nice. But I still had my regular appointment and I knew I’d get a bit more information then.
This appointment was so easy and simple. My doctor was happy as always that the tumors are shrinking and that only one can be seen now. He has another patient with the same tumors that I do and her tumors weren’t able to shrink at all, so she had the major surgery that I was supposed to have. I know that my doctor and I said that maybe delaying the surgery as I did would allow the tumors to shrink, but it seems like I’m still an oddity with this. I’ve heard from people on social media who have these tumors as well and none of them have been able to have theirs shrink. So I continue to be grateful for the medical miracle in my liver. And I know that it still baffles my doctor that it happened and he can’t really give me an explanation of why or what I did that others didn’t.
My remaining tumor is now in a place where surgery isn’t even an option anymore. Before, we discussed that he could remove the remaining tumor if I had my gallbladder out. But now, my tumor is in the middle of my liver (instead of on the side), so it can’t really come out no matter what. This is actually a good thing because having it inside my liver makes the risk of rupture lower. But I do still have to be aware if I have sudden and severe abdominal pain because that can be a sign of rupture and that’s always going to be a risk for me.
My doctor and I discussed things that may happen in my future that can affect the tumors. Pregnancy is no longer a huge risk (but I will always be high-risk if I’m pregnant) and I probably wouldn’t need a baseline MRI if I got pregnant. Fertility medications are still risky, but my doctor thinks now that they might be an option for me depending on what medications and how long I’d be on them. I hope I won’t need to go through fertility treatments, but I’m glad it’s more of an option now than it was before. And hormone replacement therapy is still one that my doctor isn’t sure about. Because they are replacing hormones (instead of adding them), they shouldn’t be risky. But you take them long-term which is risky. He said that for now, I shouldn’t worry about it and when it gets closer to that time in my life we can reevaluate and maybe there will be more research.
My doctor and I also discussed how he already ordered a repeat MRI in a year. I was a bit confused to see that because I thought after this MRI we were going to wait 2 years. But he said that at the rate my tumors have been shrinking, in one year there may be no tumors visible. 2 out of 3 are already there, it’s just this last one that can be seen. So if there are no visible tumors in a year when I have my next MRI, that will be my last one. Even if the last tumor is still visible, as long as it doesn’t get larger it’s small enough that I don’t need to be monitored. So assuming that everything continues going the way it’s been going, my MRI next year will be the last regular one. I may get them in the future if I am pregnant, use fertility medications, or hormone replacement therapy; but I won’t need another scan unless one of those things happens.
I’m equally excited and nervous that the MRI in a year will be the last one that is scheduled. I’m excited that I don’t have to do these appointments and that it will mean that I have essentially graduated from being monitored. But I’m nervous because I still have that disconnection with my body and I’m worried I will be scared that the tumors are growing and I don’t know it. But I already have those fears even with the annual MRIs so I don’t know if it would be that bad. I know that if I’m ever really worried I could get another scan, but I’d like to be in a place where I don’t think about it. And I’m not going to worry about not having regular scans until I’m told that I won’t be getting them anymore.
The last part of my appointment was getting to see what my MRI scans looked like. This time, it wasn’t as easy as it was before to see the tumor because it’s gotten so small. But it’s still there when you know what to look for and where to look. But compared to all my other MRIs, it’s tiny and I’m still shocked how much has changed between each scan.
And when you compare the tumor from 2016 to now without seeing the progression, it’s even crazier how much it has shrunk and the difference between then and now.
After looking at the scans with my doctor, the appointment was done. My doctor said to just keep doing what I’ve been doing because clearly it is working. But there’s still no medical explanation on why they shrink when other people doing the same things that I do don’t have those results. I’m definitely lucky and I’m grateful that for some reason I’m a rare case like this. And maybe in one more year, I’ll have nothing showing up in my scans and then I can consider the miracle to be complete!
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