I’ve combined the main Duke posts to this one post. They were published September 11 and September 19, 2018.
Duke Cancer Institute is in Durham, NC.
Last week, Dr. Musgrave & Company began the referral process to Duke for emergency surgery. Dr. M. wants her to have the operation ASAP, especially since, cancer aside, T’s in pretty good health. Some of her labs are a little low, but not horribly so like in August 2017 when she went into Surgery #1 terribly anemic, terribly malnourished — but still recovered quickly. Mom & I joke that she has Buffy the Vampire Slayer magical healing powers!
On Friday morning, I woke up to a voicemail from Karla, one of the admin/registration people at Wellmont Cancer Center. We usually speak with her when we check in. She said that when Trish (one of the people we usually work with when we checkout) had finally spoken with the scheduler for the doctor we wanted. Unfortunately, he told Trish that the insurance verification failed.
I called Karla back and explained how we were in the process of switching T from her employer-based coverage over to COBRA, but that BCBS of TN had said there wouldn’t be any lapse in coverage. (That turned out not to be entirely true.)
She passed word on to Trish. I called BCBS in the meantime. It was supposed to take 2 weeks to get the COBRA paperwork, which was clearly far too long to wait. I explained the situation and got them to expedite the initial processing period down to 24-48 hours and the promise that they would email me the forms instead of mailing them.
Trish called me back and said that Zack, the scheduler for Dr. Berchuck, told her that without active coverage, they couldn’t schedule Teresa. But he was sympathetic about what was going on, and told her that he would call me ASAP Monday to see how the policy re-activating was going. And mentioned that they had spots next week. (Now this week.)
I got the COBRA forms from BCBS TN at nearly end-of-day Friday. Printed them out. Read them to Teresa. Had her sign them. Scanned back to PDF. Emailed back. Called to make sure they went through. Paid for the last week of August and all of September.
Now we were just minutes from end-of-day, so I was told that the COBRA department would put a rush on processing for Monday morning, and the very latest that the policy should be re-activated was Wednesday. However, I could give the direct COBRA line to Duke, who could then call to check, and BCBS would verify to Duke that the policy was processing and that the first payment was in the system.
Monday I waited. And waited. And waited.
And waited some more.
I texted Dr. M. to find out if I’d misunderstood. Maybe Zack was calling her or calling the cancer center back? She said she’d check, and seconds later, Zack called me after all! I quickly texted her back to let her know.
Zack told me that BCBS still showed as inactive. He gave me the number for Duke’s financial group. I called COBRA first. The woman I spoke with said the policy was absolutely active, and had been for just over an hour. If it wasn’t coming up as active for Duke, someone was doing something wrong, and they should call COBRA directly.
Next I called Duke’s Financial Group and explained what BCBS said. I was told it was still not showing as active to them. I said it definitely was on my end when I pulled up her account on the BCBS website. He wanted me to call them back and have them call him. I said they wanted him to call them.
He called them!
He called me back about 10 minutes later and said we were good to go, and he’d put a note in the account!
I called Zack back and left him a message. He called me back pretty quickly.
Teresa is now scheduled for an 8am appointment with Dr. Andrew Berchuck on Friday, Sept 14.
Yup, we’re driving TOWARD the hurricane. I’d much prefer to be going the *other* direction! We’re planning to head down EARLY Wednesday to get to Durhum before the hurricane, or any hurricane-related weather arrives. My understanding is Florence is currently expected to make landfall Wednesday night. Right now, Friday is looking like the worst day for Durham. 🙁
(Though the weekend doesn’t look that hot either. Mom and I spent quite a lot of time hunting down a room which would work for the 3 of us. The rooms were selling out faster than I could register, so I was thwarted a few times!)
We really, really, really want her to have her next surgery *before* her body starts decompensating like it did last August, which obviously makes the surgery riskier. I’m terrified for her to have the surgery — but also terrified for her not to have it. Not to mention that she’s terribly uncomfortable right now. She really needs these tumors out!
This appointment is a 30-minute consult. We will find out during it about a date for surgery, and whether or not he thinks she can wait for a regularly scheduled appointment, or if she needs to be scheduled in ASAP. I will update CB as soon as possible on Friday.
We are really hoping that the surgeons at Duke will be able to fully resect Teresa’s tumors, and not leave behind little pieces to regenerate like Dr. Greene was forced to do last year. We don’t know if anyone will touch the lung nodules or not. If they do, they will probably use a VATS* procedure, which is less invasive.
A gentle reminder that her cancer is Stage 4 and there is currently no cure for Leiomyosarcoma. There is a chance that this surgery will bring her into what is called NED: No Evidence of Disease, which is what is said when someone with Stage 4 cancer has no detectable signs on scans/tests that cancer exists in the body.
But this is an extremely aggressive cancer, and Teresa’s tumors have shown that they grow very fast. LMS can come back even years later. She would need to continue to have CT scans every 3 months for as long as possible (which can be a struggle with insurance companies not wanting to approve so many scans).
But she is not fighting a battle. A request from both of us: please do not use war language to describe Teresa’s experience. We have asked this before on her blog. (Note: If you use this language for *you* and it makes you feel good, that’s totally cool. We’re not asking you to change how you talk about your own experience with cancer; just hers. War language doesn’t make her feel good, and she’s not alone in this in the cancer community.)
You can read about Dr. Berchuck here:
* VATS: Video Assisted Thoracic Surgery: a type of thoracic surgery performed using a small video camera that is introduced into the patient’s chest via small incisions. The surgeon is able to view the instruments that are being used along with the anatomy on which the surgeon is operating.
Thoracic: Relating to the thorax.
The thoracic spine is located in the chest area and contains 12 vertebrae. The ribs connect to the thoracic spine and protect many vital organs.
As always, feel free to ask if you have any questions!
This morning, after reading numerous weather reports, and watching the weather, we tentatively discussed rescheduling – if we weren’t going to have to wait forever. We really want Teresa to get in ASAP but we don’t want to put ourselves in danger either. Before we had decided for sure one way or another, a very nice nurse, Charlotte, at Duke called us. They’re moving as many patients as they can (chemo too) to next week.
So we rescheduled. I won’t lie, while I’m nervous about any delays in T’s potential surgery, I am very glad not to be going to NC this week!
(Also while Mom, T, and I all get along fabulously, we weren’t looking forward to sharing 1 King bed for 5 nights. It was the only room we could get!)
So, now, T has an appointment on Tuesday, September 18, at 1:30pm, with Dr. Angeles Secord. She sounds fabulous! T said maybe a woman surgeon will make the difference. She’s been seen by 3 male surgeons, and they’ve all declined to operate. The new patient scheduler, Zack, also called me, and he said she’s an excellent surgeon!
You can read about her here:
Crash & Burn
Question re: Physician Assisted Suicide
We texted or called a few people immediately after. Nearly everyone’s reaction was “WTF?”
Going to Duke was the biggest waste of time. It was a resounding failure. And is made worse by the fact that this doctor could have communicated her main point (no surgery) over the phone, and saved Teresa a long, agonizing round trip in the car. No point in staying overnight since we weren’t getting anything out of this trip.
We had heard SO many good things about Duke. They’re sooo aggressive in treatment, and will do so much to help cancer patients with the most sparing of surgeries unless there’s no other options. What a laugh. No help at all.
We got checked in promptly, and the people prior to the doctor were all very nice, though in hindsight I don’t care for her NP much, because I can’t believe she didn’t know that the surgeon was going to walk in and tell us no way without evening examining Teresa.
Dr. Secord: You’re a disappointment. Have you forgotten about first do no harm? You caused Teresa a great deal of physical distress by not having the kindness to review her records, which Duke received last week, ahead of time, and tell us no over the phone or in a secure message in MyChart.
You took away her hope. That in and of itself is unconscionable.
Sure, surgery carries risk. All surgery does. Yes, this one would be extremely risky, but we’re at the point where not doing anything is worse. Is more harmful. Physically and emotionally.
You caused Teresa and myself a great deal of emotional agony by telling us no, and then continuing with demonstrating ridiculous skills in the inability to listen or to use logic.
You caused all of our family a great deal of emotional agony by telling a woman who, cancer aside is in pretty great shape, that you were basically sending her home to die. She is not ready to die; I am not ready to be a widow. Dr. Secord was unmoved.
Reason given? “It’s not ethical in my heart” to do surgery.
She told us she went into the profession because she has so many family members who have/had cancer. I find it hard to believe that she went to that much trouble and expense of medical school to turn people away like this. I can’t believe she wouldn’t go out of her way to find any solution for someone she actually cared about.
She won’t operate because? The cancer will grow back. Well, no shit! Especially if you can’t resect with clean margins, but guess what, doctor? It took a YEAR to regrow to the size it was last year. And most of that year was spent without being in agony every day from the weight of this fucking tumor! That would be a YEAR’s chance to try new chemos. To try clinical trials. To get a chance to try the latest drugs and cancer “vaccines” which are having remarkable success in animal trials. But they take ages to get to human trials.
Give Teresa that chance, damn it!
She wants that chance.
Maybe it wouldn’t have grown back if Dr. Greene had been able to get clean margins, but Teresa was too anemic, too malnourished. She bled too much in the surgery for him to continue. We don’t begrudge him that at all. He saved her life that day.
So, yeah, it might grow back. But it might not if you can get the margins. And Teresa knows full well that there’s a lot of risk with this operation. She knows that even though her bowels and bladder are working fine, she might wake up with 2 ostomy bags, but that is far preferable to being sent home without even an attempt to save her.
There’s no more room in her abdomen for this fucking tumor. She’s getting hernias now from it. She rates her pain an 8. But higher if she has to cough or sneeze. We’re afraid of what will happen if the hernias get worse. If her intestines get strangulated in/by one.
Dr. Secord said she’s seen other patients go through hard surgeries like this and it didn’t end well for some of them. Some. Not all. The cancer might grow back. And that if we know other people who had major surgeries, that surgery probably only happened for them because it was their FIRST surgery. There’s no point when it’s their second, is basically what she continued on with.
Based on the ‘logic’ Dr. Secord presented us with today, she shouldn’t be operating on anyone, because even if the first surgery is done by a specialist….it could still grow back.
I asked Dr. Secord how this surgery was riskier than the first one, given Teresa’s labs are better, and Teresa is just physically in far better shape than in August 2017. She could not give me a straight answer. She kept bringing up all the chemo T has had. And, may I point out, has recovered from. If she didn’t have such short hair, I challenge anyone to know she’d had any chemo at all over the last year; much less 3 different regimens (5 drugs total), not to mention a slew of pre-medications and medicines to take at home.
Dr. Secord just kept on with there was no point. That the risks outweigh the benefits. She didn’t examine Teresa. I doubt she looked at recent labs. I doubt she looked back in her file to see how ridiculously fast she recovered from her first surgery.
Well there sure as hell is a point to us! Teresa wants every chance. How long before the tumor compresses all of her organs?
I asked the doctor about physician assisted suicide when it became clear that she wasn’t going to listen to any logic. That she was going to ignore our continued explanations that we were looking at this as a palliative surgery, not a curative surgery. That she didn’t care if she came out of it without all of her insides if it meant they could get rid of all or most of the tumor to give her the time she wants!
This question brought her up short. She said it wasn’t legal in NC (which I knew when I asked). But she could put Teresa in contact with colleagues in other states if she was serious. I then said, “If you’re okay with putting us in contact with people for that, how is it any different then you refusing to operate and sending her home to die?”
She couldn’t (or wouldn’t) answer me.
She had the gall to continue apologizing that she couldn’t help and had the gall to hug Teresa and try to comfort her after all of this crap.
She moved towards me. “Please, do NOT hug me. Do not even come near me.”
She backed off.
The ONLY good thing is she said she wouldn’t charge us for our arduous trip and appointment which could have been condensed to a 10 minute phone call or brief email.
First do no harm? Dr. Secord, you did NOTHING but harm today. Shame on you.
We are furious.
Tomorrow I will be recontacting a surgeon we spoke with before who said while he didn’t want to operate when we saw him, he would reconsider if it became a palliative need or the tumor became obstructive. Fingers crossed. If that doesn’t pan out, we have to start all over again.
She’d probably have to try Votrient, but would rather try a chemo that would target a mutation (MET) in her tumor, if Dr. Musgrave can get a compassionate release for it. It has been approved for other cancers, but not LMS. Dr. Musgrave said she may be able to get a release because of the results of the Foundation Medicine tests.
Then we have clinical trials. I’m told by a research oncologist that there’s a clinical trial coming up in a few months which Teresa may be eligible for . . . it’s in Seattle. I don’t know how it works to do a clinical trial that’s on the other side of the country from you. Anyone have any input on this?
Those of you who had surgeons who were willing to do multiple surgeries, no matter how aggressively fast growing your tumor was/is, who do you see? Did you have to convince them or were they willing from the start? Are they taking new patients? Do you know which insurances they accept?
(So far, the best treatments she’s received are/were from Dr. Musgrave (hematology/oncology, not a sarcoma specialist) and Dr. Greene (general/vascular, not an oncology surgeon). Wish we could talk Dr. Greene out of his retirement from surgery.)