The oncologist from Stanford called me first this morning to apologize for what happened with my tests, and I got the full explanation for it. When Alta Bates took the original core biopsies they set them up in a block of paraffin. Totally normal. When Stanford requested access to the biopsy, Alta Bates took 10 thin slices off the paraffin, set them up on slides and sent them to Stanford. Again, totally normal. But those samples weren't good enough for the kind of testing they needed to do in Ireland. Alta Bates won't release the full block to be shipped to Ireland (which is annoying, but also standard - due to legal stuff, Stanford wouldn't have released it either if it was going the other way).
So they tried 5 times with the samples from the slides and couldn't get what they needed, and of course completely destroyed the samples in the process. Mollick (Stanford oncologist) said that he totally understands if I want to drop out, but that if I want to stay in we could do a new biopsy tomorrow, overnight it to Ireland, and that team has committed to working through the weekend if they have to in order to get it done on time for me to start on Tuesday.
So I thought about it. We're still well within the window that everybody said I'm safe to delay, so I asked him if he wanted me to come in today we could do the biopsy and get another 24 hours of a buffer on the testing. I have basically cleared my calendar this week so it wasn't a big deal, he was really surprised and said he'd see what he could do. Called me back ten minutes later and said that Wapnir (the surgeon from the tumor board) would do it on her lunch break if I could get there around noon. So we did that.
And it was pretty much the same as the other biopsies I've had - lidocaine, wide gauge needle in from the side, weird pushing sensation as they tried to punch into the tumor, now it feels like a deep bruise and I can't take my bra off or shower for 48 hours.
The whole thing was kind of nuts in its own way - Wapnir is a well respected surgeon and certainly qualified to do this, but she hasn't done a biopsy like that in forever because these are typically handled by the clinics. And she brought another surgeon with her to assist, which was pretty much the same situation, so they were both running around the room, pawing through cabinets looking for supplies. PeiGen (study coordinator) was there with all the shipping materials in hand, and had it packed up and ready to ship before I was even dressed all the way. Bob was sitting in the corner watching what was going on.
So, next Tuesday. Mollick offered to go talk to Wexler today to explain the situation, and ensure that both Alta Bates and Stanford will have the right thing ready for me Tuesday morning, whether I'm on the study or not.
Weird good outcome, next Tuesday evening and Wednesday are a dinner and all day working meeting (I don't have to present, thank goodness) for a high level group I've been invited to join at work around M&A. It could be a big thing career wise and it's the last thing that has really worried me. I checked in with my sister and asked her what she thought and she said that taxol, especially the very first dose, won't hit me hard until Thursday, so I should be good to go to dinner and attend the meeting. I am pleased with that, at least. And vanity-wise, I'll still have all my hair firmly attached to my head. But I'm also impatient about the rest. The thing isn't growing at nearly the speed it was a few weeks ago, but it is getting bigger. Still doesn't hurt. Still mostly just tired.
I don't think I've mentioned it here yet, so a quick note about why I really want to continue with this study even with the delays and even if I end up in the control arm. Leasha and I are relatively rare in being white women with this type of cancer. The "normal" patient is of Latino, African, or Afro-Caribbean descent. When Leasha had it five years ago there had literally been no studies done on it, even though it had been known for several years. Nobody has said so, but it seems like there's a great neglect in the research due to racism and the demographics there - the majority of patients who are triple negative don't have money or good insurance and have been left behind. That sucks, and I want to help reverse that if I can do it without damaging my own health further.
I expect it to be a quiet week. PT on my knee on Friday, and otherwise just waiting for email updates from PeiGen on how the testing is going.
So they tried 5 times with the samples from the slides and couldn't get what they needed, and of course completely destroyed the samples in the process. Mollick (Stanford oncologist) said that he totally understands if I want to drop out, but that if I want to stay in we could do a new biopsy tomorrow, overnight it to Ireland, and that team has committed to working through the weekend if they have to in order to get it done on time for me to start on Tuesday.
So I thought about it. We're still well within the window that everybody said I'm safe to delay, so I asked him if he wanted me to come in today we could do the biopsy and get another 24 hours of a buffer on the testing. I have basically cleared my calendar this week so it wasn't a big deal, he was really surprised and said he'd see what he could do. Called me back ten minutes later and said that Wapnir (the surgeon from the tumor board) would do it on her lunch break if I could get there around noon. So we did that.
And it was pretty much the same as the other biopsies I've had - lidocaine, wide gauge needle in from the side, weird pushing sensation as they tried to punch into the tumor, now it feels like a deep bruise and I can't take my bra off or shower for 48 hours.
The whole thing was kind of nuts in its own way - Wapnir is a well respected surgeon and certainly qualified to do this, but she hasn't done a biopsy like that in forever because these are typically handled by the clinics. And she brought another surgeon with her to assist, which was pretty much the same situation, so they were both running around the room, pawing through cabinets looking for supplies. PeiGen (study coordinator) was there with all the shipping materials in hand, and had it packed up and ready to ship before I was even dressed all the way. Bob was sitting in the corner watching what was going on.
So, next Tuesday. Mollick offered to go talk to Wexler today to explain the situation, and ensure that both Alta Bates and Stanford will have the right thing ready for me Tuesday morning, whether I'm on the study or not.
Weird good outcome, next Tuesday evening and Wednesday are a dinner and all day working meeting (I don't have to present, thank goodness) for a high level group I've been invited to join at work around M&A. It could be a big thing career wise and it's the last thing that has really worried me. I checked in with my sister and asked her what she thought and she said that taxol, especially the very first dose, won't hit me hard until Thursday, so I should be good to go to dinner and attend the meeting. I am pleased with that, at least. And vanity-wise, I'll still have all my hair firmly attached to my head. But I'm also impatient about the rest. The thing isn't growing at nearly the speed it was a few weeks ago, but it is getting bigger. Still doesn't hurt. Still mostly just tired.
I don't think I've mentioned it here yet, so a quick note about why I really want to continue with this study even with the delays and even if I end up in the control arm. Leasha and I are relatively rare in being white women with this type of cancer. The "normal" patient is of Latino, African, or Afro-Caribbean descent. When Leasha had it five years ago there had literally been no studies done on it, even though it had been known for several years. Nobody has said so, but it seems like there's a great neglect in the research due to racism and the demographics there - the majority of patients who are triple negative don't have money or good insurance and have been left behind. That sucks, and I want to help reverse that if I can do it without damaging my own health further.
I expect it to be a quiet week. PT on my knee on Friday, and otherwise just waiting for email updates from PeiGen on how the testing is going.
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