1. < Pancreatic Cancer

Can we get cancer insurance after diagnosis?

Posted by steveron @steveron, Jul 3 3:32pm

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.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

marienewland | @mnewland99 | 5 days ago
In reply to @56pan "I'm assuming you'll be on the PARP inhibitor long term? I remember my oncologist told me..." + (show)
@56pan

I'm assuming you'll be on the PARP inhibitor long term? I remember my oncologist told me he would put me on the strongest chemo mixture available last Oct., which was Folfirinox. I developed some neuropathy but nothing debilitating. The last 3 cycles, he reduced the oxaliplatin by 50% as he thought my neuropathy was getting serious. It really wasn't, but he made the call. I handled the chemo well. The 3 days taken with the chemo and the pump, I couldn't do any exercise. All other days I went to the YMCA and swam 1/2 mile religiously. I attribute the effectiveness of the Folfirinox being helped by that. And some divine intervention. I'll post here what's decided on how they'll attack the liver tumor when I know, if folks would like me to continue with reports on this journey. I do know that my original oncologist and the VA oncologist have agreed that Olaparib is the way to go when/if this liver tumor is removed since I have the BRCA2 mutation. Thank you for your info and time, sir.

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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!

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1 reply
ncteacher | @ncteacher | 5 days ago
In reply to @gamaryanne "There is one exception for us that chose an Advantage plan initially. My specific plan is..." + (show)
@gamaryanne

There is one exception for us that chose an Advantage plan initially. My specific plan is being discontinued in my area which gives me the opportunity to move to Medicare and supplement without underwriting.

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That's super, albeit it a little disruptive. I hope everything works well for you.

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marienewland | @mnewland99 | 5 days ago
In reply to @gamaryanne "There is one exception for us that chose an Advantage plan initially. My specific plan is..." + (show)
@gamaryanne

There is one exception for us that chose an Advantage plan initially. My specific plan is being discontinued in my area which gives me the opportunity to move to Medicare and supplement without underwriting.

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Bravo, gamaryanne! Thank you for sharing that!

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56pan | @56pan | 5 days ago
In reply to @mnewland99 "Thank you for information you have relayed! I can’t tell you how much I admire your..." + (show)
@mnewland99

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!

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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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stageivsurvivor | @stageivsurvivor | 5 days ago
In reply to @mnewland99 "Thank you for that history @stageivsurvivor. Based on what I know so far about this disease,..." + (show)
@mnewland99

Thank you for that history @stageivsurvivor. Based on what I know so far about this disease, I assumed “12” was based on a clinical trial. So if more oncologists are aware of how the standard number of treatments are arrived at, why aren’t they more willing to go beyond 12?? Does it have anything to do with insurance and that is the magic number they will pay for ; particularly for a HMO?

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Coming 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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marienewland | @mnewland99 | 4 days ago

Thanks 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.

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