We got back from Sloan at about 6:30 or so and stopped in New Paltz to pick Emily up from Jim’s sister’s house. It was a long, mostly horrible day.
We left at 5:30 and got to the hospital at about 8:00 a.m. Ana wasn’t able to eat or drink anything after 6:30 (two hours before the test was scheduled), but she didn’t get the scan until 11:00 due to some delays – the biggest one being that somewhere along the line someone forgot to have her drink contrast, so when we went down to get the scan, she had to be sent back up to pediatrics for the contrast – and then sit and wait an hour for it to go through her system.
She also had contrast injected into her I.V. (she had an I.V. placed in the morning when we first got there). The study itself only took about 15 minutes. Here she is, about to get scanned.
Radiology was on the 2nd floor of the hospital and Pediatrics was on the 9th floor, so we did a lot of (hungry) running around until we finally sat down to meet with Dr. Laquaglia at around 1 pm or so. By then Ana’s scan was back and he went over it with us.
Unfortunately he was unable to tell us with any certainty that he would be able to resect the tumor. The problem wasn’t the veins being involved as we’d been told at Westchester. He saw an artifact in the right lower lobe of her liver (the lobe we thought was clear of the tumor) which he couldn’t identify. If this is tumor, then there is no way to save Ana’s liver because (according to Dr. Laquaglia) resecting the liver and leaving the tumor in the right lobe is basically just setting her up for a transplant later on.
Apparently there are radiologists at Sloan who only look at livers and these people are going to review the scan and work with Dr. Laquaglia to determine what this mass is. There is a possibility that it’s an enlarged bile duct but Dr. Laquaglia didn’t say this with much conviction.
Ana’s case will once again be presented to Sloan’s tumor board either this Thursday or next Tuesday and he’ll follow up with us to let us know if he recommends she get a liver transplant or liver resection. If she needs a transplant, we can’t go to Sloan (they don’t do transplants).
And…more discouraging news – the chemo did not seem to have much of an effect on the tumor. It appeared to be minimally smaller (1 – 2 cm) and it also showed some calcification which means that some tumor cells likely responded and the tumor may have collapsed in on itself a bit, but there was no significant shrinkage. Dr. Laquaglia explained that this type of tumor is unresponsive to chemotherapy because only about 20% of it is made up of typical tumor cells. Mostly it’s made up of..other…stuff. Inflammatory stuff. Fairy dust. I don’t know what the hell he was saying.
When I asked if this was considered cancer he couldn’t really give me a straight answer. He said it falls in a grey area – the cells of this tumor are inflammatory and the “other” cells and are not malignant in the typical sense, but these tumors can sometimes become malignant (and spread). Whatever it is, he said it is a very serious tumor.
THANK YOU DR. GENIUS. I don’t need to be a world-renowned liver surgeon to come to the conclusion that this is a very serious tumor.
So the next steps are (and as I type this, I’m taking a very deep, very defeated, very frustrated breath). ..
Jim needs to bring Ana back to Westchester to get an infusion of a drug called Pentamidine – an antibiotic that she needs to get once a month as a preventative measure since her immune system is compromised. He’s going to bring a copy of the CT scan with him for Dr. Hochberg. She’ll hopefully be able to compare it to the original CT scan and let us know her thoughts on continued treatment (in terms of chemotherapy). Since the tumor doesn’t seem to be responding to the chemo, I doubt she’ll be getting any more of it. Dr. Laquaglia said that these tumors rarely respond to chemo and that the only known “cure” is surgery. This is something we knew – the chemo was a shot in the dark JUST in case.
We will also send Ana’s CT scan to Dr. Kato, the surgeon at Columbia who does the ex vivo procedure. We just want to get his opinion at this point – we are likely not going to go with ex vivo (especially if her veins are not as involved as we originally thought). Ex vivo resection won’t work if there’s tumor in the right side of her liver anyway since that would mean her entire liver is affected.
I believe that the course of treatment rests primarily with Dr. Laquaglia and the tumor specialists at Sloan. If they determine that her liver can’t be saved, then we will need to move forward with the transplant. If they believe it can be saved, then Ana will get the surgery at Sloan with Dr. Laquaglia. There is some time sensitivity with the latter course of treatment since the healthy part of her liver may dwindle as the tumor grows, which means if we wait too long, then there may not be enough healthy liver left to save.
There was one slightly interesting, possibly good bit of information. Apparently Ana has an extra vein that is not a defect, but is something rare that only about 5% of people have. This is something that can provide blood to her liver if she does get a resection (I’m probably botching up this explanation). Hooray for spare parts.
Oh and, yes, we did manage to vote today.