Roswell seems to be a bust.
Back in February, Dr. Kane told us that he never says never, and if the need for surgery became palliative or obstructive, he’d operate.
The nurse we spoke to on Thursday told us that he says the real reason he didn’t operate in February was the disease was “too extensive” (and therefore, would definitely not operate now when it was surely more extensive).
Best as we can tell, he never read the entire email (or perhaps any of it) that I painstakingly wrote (and nervously sent). He never looked at any of the CTs, labs, reports, etc. The nurse called only to find out where she had the scans done so they could order the CD, which would take days to get. She didn’t know anything about the email or that I’d digitally provided everything needed. Luckily I had the CD on me, and they sent a volunteer up to get it.
Dr. Kane had been in surgery pretty much every day, and was Thursday, so he wouldn’t get to look at the CD until late. But we never heard anything Friday either. The nurse also said that Kane doesn’t do emergency surgery and that it “isn’t a thing”. (How is emergency surgery not a thing?!)
If it’s true that he didn’t operate in February because he thought the disease was too extensive, then he lied to us and intentionally gave us false hope that he would operate when he never intended to do so. Which is complete crap to do to people. We’ve been holding on to him as hope all this time that if nothing else, we could go back to him, and he’d help her, when apparently, he never was going to do anything. *Grrrr! Argh!*
I asked him to please let me know something. But we had to reach out. Days after I got the read receipt for the email. They were never going to call us. This has been an exercise in futility.
Reasons we got for a probable NO here was:
She’ll never be NED. (Well, not if you won’t even try!)
It’s risky. (No, really?)
It’s too extensive. (Let me find you that article about the woman with the 160lb ovarian tumor … which she got removed.)
And so forth.
And, really, how do you KNOW she will never be NED? Sure, maybe that’s true, but if you don’t try, she certainly won’t be! It takes years for some people to get to NED.
He’s the one who told us back in February that everything would be different if a sarcoma doctor had operated first. Yes, we get that, but we didn’t know we needed one. And really, you can’t expect me to believe that everyone who has surgery for what they think are benign reasons (ex: routine hysterectomy) and end up with a “Surprise, it’s cancer!” outcome, are never, ever, ever able to get a second operation? That’s utterly ridiculous.
If you aren’t willing to try, then of course, she will never reach NED! You gotta try.
If you have had multiple surgeries for cancer, especially one that is rare and/or extensive, please tell me HOW you got your surgeon to do more than one surgery? Because we are batting zero, even at centers which are reported to be very aggressive in treating patients, and thus, very aggressive about operating. This is a serious question. We want to/need to know. Sooner rather than later.
In the meantime, while we were up here, Dr. M has been pursuing getting hold of a targeted chemo drug called Cabozantinib. This will target the MET mutation in her tumor (she also has this mutation in her DNA). T says she has a good feeling about this chemo. I’m trying not to be hopeful, because every time I’ve been really hopeful, the news gets progressively worse.
This is an oral chemo which she will take (I believe) daily.
It’s FDA approved, but not for leiomyosarcoma, which is why it can be difficult to get for T outside of a clinical trial. But because of the Foundation Medicine and the Genetics test results, Dr. M thinks she should be able to get it. She didn’t know if we’d be successful in getting T a surgery, so she started working on this chemo as a Plan B.
Dr. M is really awesome. T said she’s glad to be getting back to the safety of her care.
We will get back to Roanoke on Sunday (we’re splitting the trip sort-of in half) and then on Tuesday, we will go back to Abingdon.
On Wednesday, she has labs and an appointment with Dr. M.
On Thursday, she has an appointment called “Interventional Radiology”. It’s painful, and uncomfortable, as I’m sure you all can imagine, for multiple liters of fluid to slowly build up on T’s right lung. And then have to get a large-volume thoracentesis done. The worst part for T is the part after the fluid is drained. As her lung re-inflates, it makes her cough a lot. And if she takes too deep a breath, she has pain from that. Within 1 – 1 1/2 days, she’s usually fine. But it is a lot to go through every 2-3 weeks.
So the outcome of Thursday will be a pleural catheter inserted in her chest wall, so that up to 1 liter can be drained slowly at home by a home health nurse (or, eventually, a trained family member). She will get 6-8 weeks of home health care, done in Roanoke.
These are usually done for patients with malignant pleural effusions, but sometimes now also for benign effusions, when they’re reoccurring.
Hopefully she will get approved for, and be able to start the next chemo soon. Once Dr. M knows about approval, then we can see about getting T a baseline-CT. The closer to the chemo start date, the better.
A friend gave us the name of a surgeon up at VCU (Richmond, VA, area) and he sounds promising. We won’t get our hopes up because we’ve been down the “sounds promising” road with surgeons in the past, but what I’ve read is encouraging. Not just for surgery, but that he may actually be able to offer other options which no one else has so far (like targeted radiation).
It was also suggested that we try to track down Dr. Greene and ask for his professional opinion, since he was the one willing to operate in the first place. That perhaps if we had even a general surgeon backing up a request for surgery, someone may be more willing.
Let me know if you have any questions, or if you would like to visit Teresa once we’re back from Abingdon!
EDITED TO ADD: Like with Duke, we will not be posting any reviews, or writing any public articles, of Dr. Kane at this time. We don’t need any additional road blocks to getting Teresa in to another surgeon. Thank you for understanding.
I don’t know the specifics of the catheter Teresa will be getting, but if you go to the following site, you’ll get an idea of what a pleural catheter involves: https://www.bd.com/en-us/offerings/capabilities/interventional-specialties/drainage/about-the-pleurx-drainage-system/patient-information-pleurx-system