Cait
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More of the same confirmation from me – I was intrahepatic, 9 cm tumor in my liver, and the only blood marker that was elevated was my CA19-9 tumor marker. If they had looked at liver enzymes alone without the CA19-9, they might have thought I was fine even though 83% of my liver was tumor.
You are correct about PETs being more accurate for intrahepatic. They’re also incredibly sensitive and can light up from such innocuous things as someone reading a book before the test and the repetitive arm movement causing the arm to uptake more of the solution. For this reason, biopsies are the gold standard, but CT’s and MRI’s are also used to visualize the mass and see if it has some of the physical characteristics of cancer (i.e. calcification).
Not a radiologist either, just a patient who’s read a ton. Kudos to you for seeking more information and advocating for her! If you ever start to get a gut feeling about things, second opinions are wonderful tools!
That’s wild! I don’t think I have a similar hobby that got easier in chemo, I just had some pretty bankable flu-like symptoms. I should have payed more attention when I was watching Jeopardy… 🙂
Huzzah! Super exciting. 🙂
Congrats to Rick and team for an awesome end result, and thank you for your efforts in getting this new site up and running. Everything looks great!
Hi Scott – not sure if you ever found your answer, but I have a similar situation. Prior to my diagnosis I was basically without symptoms, but I feel like we’ve poked the bear so to speak, and I have pretty frequent very manageable pain. My CA19-9 has been coming down, and scans do show some shrinkage, so I’m hoping that is what’s causing this pain.
Lainy – thank you! That helped put my mind at ease, and tell Orville he’s a punk and currently the only ‘person’ on #teamtim. The anti-Tim hashtags are too profane to print…
Marion – Thank you for the reassurance and resources. I will definitely read the pamphlet before our chemo teaching appointment tomorrow so I can better follow along. I’m finding the more I know going into appointments the better I understand when the doctor is explaining next steps in my appointments. Knowledge is power!
Cait
Hi everyone,
Been a whirlwind of a few days. Went to work today after a half day yesterday to head to Rochester to meet my new medical team. I felt really good talking with my surgeon and my oncologist, and they both seem to have a lot of experience treating CC. They said the biopsy gave them the definitive diagnosis, and the second biopsy they did of my healthy liver looks great. They didn’t talk about doing any other scans though to make sure it isn’t anywhere else. Is that normal? Should I ask for things like a PET scan to be sure?
Tomorrow is a meeting with a fertility specialist then our ‘chemo teaching’ appointment to understand how that’s going to go. Next up is the PVE on Thursday and hopefully home sometime Friday to rest over the weekend. Then back to work Monday and Tuesday before heading back to Rochester next Wednesday for my first round of chemo. Feeling pretty nervous about that one, but other than that I feel like I’m in good spirits. I have a ton of support, so I know I can lean on others when it’s time (even if it isn’t normally my way).
My surgeon did share some good news that he has seen patients who have remained cancer free for years after their resection. He said one patient in particular was about my age 12 years ago when she was diagnosed, and she is still cancer free and sends him a card every year. He then told me I can send him cards too once I’m cancer free.
Lots of good stuff, but also exhausted and still quietly nervous at all the ways this can go awry. Shooting for surgery at the end of January. God willing.
Cait
Thanks to everyone for the quick replies and resources. I would love to hear each of your stories and will poke around the site more tomorrow to see how things are going for each of you so you don’t have to retype. We’re leaving for New York at 5:00 am tomorrow morning, so I’ll have some time in the car to do more digging in preparation for my appointment. Good news on the doctor front – the surgeon I have an appointment with on Monday was the head of the liver department at Barnes, and his former team was completely enamored of him. Here’s hoping he lives up to the hype!
We are also only about an hour drive from Roswell Park, so we’ll be reaching out to them this week as well to get a third opinion (Lainy – thank you so much for the suggestion). I have a great support network around me, but you all are right that the missing link is folks who know what we’re facing. I am so thrilled/relieved to have found this community so quickly and to already see responsiveness in its members.
Take care all for the night and tomorrow, and I’ll check again tomorrow and probably post after my appointment on Monday.
Cait
