Hello, new to this.
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HI Jack & Kasia,
I am so sorry that you and your family are going through this. My husband was 42 when he was diagnosed last November and our children were 13 and 10.Our insurance did cover testing by Foundation One, but they required pre-authorization and a pretty substantial rational from his oncologist about why she deemed it necessary for treatment. Foundation One tried to test two different samples from my husband’s resected tumor, but both failed and our insurance was never billed.
We also had the same quandary about starting treatment before receiving a second opinion, but fortunately, we were able to squeeze in a second-opinion visit just before chemo started. We did have to fly in/out on the same day to fit it in though. I do not know how large the tumor board was that reviewed your case, but it might give you some comfort that more than one doctor looked at your case. I would try and use Monday to get a specific date scheduled with a second-opinion surgeon, and then you can share that with your oncologist on Tuesday. Share with the surgeon’s office your dilemma about starting chemo and see what they have to say.
Best Wishes,
VictoriaKazias……Foundation One will bill the insurance. Unlike a few years ago when patients were responsible for the residual cost today this doesn’t happen anymore. Foundation One simply absorbs the cost. This cooincides with what board members have reported.
Hugs
MarionJack…..absolutely, search out a second surgical opinion independent of the opinion from another oncologist. You may want to ask Dr Kim the reasons for adding entering you in the possible clinical trial with PI3K. Also you would like to know whether it could prevent you from possible other clinical trials.
Of course you are scared, who isn’t? You may want to inquire about a drug aimed to treating anxiety.
HugsMarion
Kasia,
Foundation One did my husband’s testing and my insurance only paid a small part of the claim and they did not ask for the balance. If you go to their site it even says that on there and you can call and ask for yourself, I did that because I couldn’t believe what I was reading but it’s true, they cover the costs. It’s diffinitely a test that you want done to see what clinical trials he would qualify for. Good luck.
Kim
Hi Kasia,
Welcome to the discussion board. It is great you found this community. One aspect of a rare cancer is that patients and family members end up doing a lot of research and legwork. Your background as a nurse is an incredible asset for your brother.
I think insurance policies vary. The insurance I have is with one of the big companies and does not cover genetic testing for most cancers – it is viewed as “investigational” rather than “medically necessary.” My impression however is that some insurers might cover it, maybe needing the physician to explain why it is urgently needed, so it is worth checking. My guess is these policies will eventually become more favorable given the trend toward personalized cancer treatment.
As you have probably already found, the companies that perform the testing such as Foundation One do offer some financial assistance to qualifying patients.
Regards, Mary
Hi, my name is Kasia, and I am Jack’s twin sister. I have been reading these discussion boards since my brother was diagnosed. It’s ironic because as a long time RN, I don’t have much experience with cc, but I was not in oncology.
Does anyone know if insurance covers genetic tumor testing? Just curious since Jack was told it can be quite pricey. I know he will get it done regardless.
I have been reading everyone’s stories and it does bring hope to my family since Jacks ICC shows no mets. He is getting 2 nd opinions right now, since the first said he was not resectable at this time.. I feel like time is standing still as we wait for what’s to be done.Thanks
KasiaI have read a lot about second opinions, my question is can I start treatment and continue looking for other opinions. I have an appointment with my oncologist on Tuesday next week and he will want me to start chemo asap. What to do?
Thank you Melinda for the link , found it interesting.Thanks
JackDear Jack,
Welcome to this incredible family of amazing patients and caregivers from all over the world. I am sorry you had to join us, but please know you are NOT alone.
Second opinions are always warranted with this disease, and at times sometimes three or more. I don’t know if you had genetic profiling done on tumor samples yet, but that is imperative to get done asap. If they were done, the treatment with the PI3k inhibitor may be chosen because of those results. I found the following article from this year’s ASCO conference discussing the PI3k pathways, I hope it helps.
https://am.asco.org/exploring-pathway-despite-lukewarm-clinical-benefit-pi3k-inhibitors-optimism-remains-regardingPlease keep us posted and don’t hesitate to ask questions.
All my best,
MelindaThank you guys for giving us hope and good advice. At this time i can’t even think straight but your comments are calming.
You will be hearing from me in the future.
Thank you soo much,Dear Jack,
I am very sorry for your diagnosis, but very happy you found us. My mother had ICC, and they tried to operate, but once in closed her back up and told us 12 month prognosis. However, 2 cycles of chemo and then two Y90 treatments, and she has been free of disease for almost 3 years now. She is unfortunately not the norm, but we are hearing more success stories than in the past- treatments are improving and we are seeing some great results with new targeted therapies.
I do not know about the PI3K, but towards the top left there is a “search” option- when I put in PI3K there were some earlier posts which may help you out. And, since it sounds like your tumor may be similar to my Mom’s ( once central ICC with no mets), it couldn’t hurt to also ask about Y90 as well.
I’m not sure where in FL you are, but Mom’s IR doc is now at Sarasota Memorial if you opt for a second opinion.Best wishes,
CatherineHi Jack,
Welcome to our group! This diagnosis is, at first, devastating, scary, confusing, and more. Far too many of us have been in your shoes. Hopefully, through contact with our members, and reading posts that resonate with you, you will begin to have hope. We have many success stories on this board. My husband was deemed inoperable (peri hilar CC), but did achieve some shrinkage with gem/cis and then ultimately found a fantastic surgeon that successfully respected him. That was 2.5 years ago and he is healthy. Everyone’s story is unique, but there are many treatments and trials that are allowing patients to live happy, productive lives with their CC as a chronic or manageable condition. My best advice would be to stay calm and focus on getting e pert opinions and making the best decision for yourself every step of the way. Please lean on us for information and/or support.
Debbie
Hi Jack,
Welcome to the discussion board. I hope you have also found your way to the other sections of the Foundation website that contain information and resources, especially valuable for new patients.
Your story struck a chord with me. I was initially told my large, centrally located ICC was inoperable by a major hospital tumor board, but was lucky when a doctor involved in my diagnosis reached out to another surgeon willing to operate. It is important to get good surgical opinion(s) early on especially if your diagnosis shows a single tumor in the liver that has not spread. In my case, my surgery was a “central hepatectomy” which is a less usual form of resection.
Reading patient experiences on this board was really helpful to me to figure out what I needed to do and what to expect. Please post any questions or concerns you encounter – this board brings together many patients and caregivers with a wealth of experience with this rare cancer.
Regards, Mary
Hello everyone, I am so blessed my wife found this website. We have been on this website everyday for the last couple of weeks. I am 46 years old with 3 daughter. I was diagnosed July 20,2017 with ICC. I have a tumor centrally located on my liver. I was referred to Moffitt Cancer Center in Tampa FL. I am seeing Dr. Richard Kim. Today after his tumor board met I was informed that the tumor cannot be resected at this time. So he recommended standard chemo to try to shrink it, with possible clinical trial PI3K inhibitor. Has anyone had any experience with this combo?
Any thoughts, ideas, or recommendations? I am devastated,scared and I can’t even explain.Thank you, Jack
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