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Can we get cancer insurance after diagnosis?
Our Medicare Advantage insurance policy does not allow for out of network treatment even when that treatment is superior to what our provider offers. In particular, there are Whipple surgeons with far greater abilities, experience and success than at our provider, yet our policy will not approve surgeries by them.
Has anyone obtained 2nd opinions or treatments from providers outside your network? If yes, how did you do it?
Also, we understand there are specific "cancer" insurance policies available. Has anyone obtained "cancer" insurance after they were diagnosed or had treatments? Such a policy might allow us to have surgery by a more experienced surgeon.
Thanks for any info and suggestions.
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Thank you for information you have relayed! I can’t tell you how much I admire your physical routine of swimming while on Folfirnox - so if you had any “down” days of nausea or weakness then you just pushed yourself through those? Absolutely, 100% amazing!
That's super, albeit it a little disruptive. I hope everything works well for you.
Bravo, gamaryanne! Thank you for sharing that!
Yes, there were some days the exercise was the last thing I wanted to do. I'd always wear one of my USMC T-shirts to get my mind right.
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1 ReactionComing from a career in clinical research that included cancer, I too assumed 12 cycles was based on clinical trials. I tracked down three of the pioneers in doing the trials for Folfirinox, (m)Folfirinox, Gemzar and GemzarAbraxane which is how I learned of this.
Folfirinox is very toxic. Each of its components can cause tissue and organ damage that can be very debilitating. No oncologist wants to put their patients in that situation and studies have shown no significant benefit doing a few extra cycles.
In those that did benefit, we were younger (under age 60), very physically fit (running or endurance cycling or other strenuous physical exercise), no other co-morbidities, and we all advocated for going beyond 12 cycles. In my case, I was familiar with what physical damage could occur from toxicity but was willing to accept the risk. I was prepared to adjust to a new normal by adapting to the limitations that could arise.
I was monitored very closely. I received calls from care team members in the days following infusion. If sequela had developed that was detrimental, treatment would have been assessed. Fortunately I tolerated treatment extremely well and used pre and post medications to prevent/control symptoms. I did daily moderate exercise and never missed a day of work in 24 months of treatment. My immune system likely played an important role in getting the disease under control. It is thought my tumors produced many neoantigens making them more recognizable to dendritic and macrophage cells. All of this were likely contributing factors that led to becoming an exceptional responder.
My advice to someone that is strong physically, emotionally and mentally is self-advocacy. This is the time to learn about the possible long term temporary and permanent side effects and make a decision if willing to accept the potential consequences as I did. If one’s oncologist says no, go for additional consults at NCI centers of excellence and Comprehensive Cancer Centers with high-volume pancreas programs.
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2 ReactionsThanks for your reply - incredibly helpful! The cards were in your favor, no doubt. I have a favorite line I like from a group from the old days (the Faces) “wish that I knew then what I know now…). In retrospect I agree “go to a center with high volume pancreas programs”. Best advice I can second to those who get this disease with very little warning to oneself or to drs with limited experience in recognizing signs of pancreatic cancer.