May 1, 2018 at 7:38 am #96909
Thank you so much Molly, it’s so helpful to know the way it works for you with the referral, the timing, and the scans – I hope our insurance will clear things up so we can plan ahead of time (like you said, last thing any of us needs are more bad surprises.)
Thank you for the reassurance too – I want to turn over every stone for my dad and am so scared that there just aren’t any good stones for us…
Wishing you all my very best, with hopes for health and happiness for all!
LiliMay 1, 2018 at 7:27 am #96908
Thank you Mary! Remote would be much easier… I wish they would do video chat if they need to see the patient’s status for a 2nd opinion on treatment decisions…May 1, 2018 at 7:25 am #96907
Thank you so much VTKB, it’s so helpful to know how others do these things. I hope you and Kathy are holding strong.
I asked our oncologist’s office at Memorial Sloan Kettering (my dad gets his chemo locally at the Miami Cancer Institute, but goes to Sloan for his scans and the oncologist there makes the calls) – the head nurse said the doctor doesn’t give recommendations for 2nd opinions, that’s on us to figure out. I called insurance and got 2 different answers (one said as long as the facility accepts our insurance, that’s fine – but then someone else said a primary doctor has to ask for prior authorization… I am still unclear when this has to happen, or how an MRI at the 2nd facility would be covered after a recent CT, but we ended up not needing a 2nd opinion at the moment because my dad’s latest scan was unchanged so he will continue with Folfiri for now… I still wish we could see others but if the current chemo is “working” then they can’t predict what they would offer if it stopped (my fear is there is nothing after this 2nd line chemo…)
I don’t know why we’ve never been presented to a tumor board – perhaps because my dad is inoperable sadly. He has peritoneal carcinomatosis. I’ve asked about hipec but he also has some minimal liver mets (around/outside the liver and a bit near the portal vein) so the Sloan oncologist answers any of my questions about trying to adopt approaches from other cancers (like colon cancer where they do hipec even when there are a few liver mets), or do locoregional procedures in combination with systemic therapy with this answer: “No. There’s no data of benefit. He has systemic disease so we need systemic treatment.”
I don’t know what to think – whether any other reputable place would think outside the box either. But there aren’t enough tools in the standard box, we’re already on 2nd line chemo… what to do when it’s a rare cancer, and you have no targetable mutations or immunotherapy indicators? So hard…
Sending all my best wishesApril 13, 2018 at 6:23 am #96829molly_mayParticipant
You should ask your ins Co what they require. Mine does require a referral from my primary care physician, which she is very happy to give. Some companies have different rules regarding deductibles, co-pays etc if you are going to be out of network. In the end you need to do whatever you need to do, but at least you’ll have all of the information. The last thing you need is more (bad) surprises.
I can generally be seen within a week or two of my doctor doing the referral. It can take a week or two to get medical records sent (and reviewed), and for the other provider to decide just what exactly they can do for you so they can set up your appointment accordingly. My insurance requires that I have certain tests done at home (CT’s and MRI’s), and that can also cause delays.
It is a process, but you will get there.
Best of luck to you,
MollyApril 12, 2018 at 9:19 pm #96826bglassModerator
Billy’s (vtkb’s) response is excellent and thorough, so I will just add one idea.
Some of the major cancer hospitals offer remote second opinions, where you send scans and other information electronically but the patient does not need to travel. Depending on circumstances, this might — in certain cases — be an option.
Best wishes as you seek additional opinions.
Regards, MaryApril 12, 2018 at 8:22 pm #96824vtkbParticipant
You do not need your oncologist permission to get a second opinion, although many will actually encourage it. But each center may have a different way of obtaining the consults. Is your dad a surgical candidate? If so you can google the liver/cholangiocarcinoma surgeons at each center and call their office to find out their policy. If he is not a surgical candidate, search for medical oncologists at each place you want to go to and call their office and email them. If you are traveling to NYC I would suggest Sloan, Mt Sinai and Columbia Presbyterian as they have all dealt with cholangio patients. You could probably try NYU also, although I have no experience with their doctors. You should ask your main oncologist for copies of any labwork and scans, and pay for 2-3 extra copies of the scans (the actual images on disks) as you will need to send them to each oncologist/surgeon/center. When Kathy was first diagnosed, her GI sent her to the surgeon at Sloan first (Dr. Jarnagin) who then set kathy up with an oncologist at sloan. We told the oncologist we were seeking other surgical opinions and he did not mind at all. We then called Fox Chase in Philly and saw their medical GI oncologist (forgot her name) who later presented Kathy to their tumor board and surgeons. We also called Dr. Schwartz’s office at Mt Sinai (her eventual surgeon) and called Dr Kato (surgeon) at Columbia Presbyterian for 3rd and 4th opinions. Each requested a copy of her labs and scans before seeing her. As for cost you will have to call your insurance to see who is in network and not, and if they cover second opinions. Kathy’s insurance initially did not cover Dr. Kato’s consult but eventually reimbursed us after a few phone calls. A second opinion can cost around 1000 dollars if not covered by insurance, but it was worth it for piece of mind. Kathy still sees the med onc at Sloan who coordinates her treatment course with her surgeon at Mt Sinai.
Good luckApril 12, 2018 at 9:19 am #96801
Does anyone know what the process is like for securing a 2nd opinion (or a 3rd and 4th opinion even)?
If the center accepts your insurance, can you make an appointment or is there a special process where you have to get a referral from your original oncologist first? When does this have to happen, how far in advance?
What if you get a CT scan at your original place but then they need an MRI at your 2nd opinion shortly after?
Anything else I should know? It’s so hard to figure out what to do, I want to plan for a few other appointments for right after my dad’s next scan which he is traveling to NYC for (so we can see all the potential opinions in the city before he travels back to Florida)…
He’s too young for Medicare but he still has health insurance from work for now (Blue Cross Blue Shield, Blue Options, PPO)
Thank you so much
- You must be logged in to reply to this topic.