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.

@56pan

My ins. agent I've used for many years told me that since I had a previous cancer diagnosis, no medicare supplemental insurance company would take me. In my opinion, tradtional medicare is better than Medicare Advantage. I'm fortunate in that the VA is picking up what my supplemental plan would have. Please check on this and I hope I'm proven wrong about coverage for cancer patients by medicare supplemental ins. companies.

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I had no issue purchasing supplemental insurance plan G under Part D of Medicare having had a diagnosis of metastatic pancreatic cancer in 2012. It is a PPO type plan providing no restrictions n choosing whoever I want out of State. I have no restrictions that an HMO Advantage plan might have. Even during my working years, I steered clear of HMO plans as I never wanted to be restricted to who or where I could be been when specialized care was required. When one gets a catastrophic illness, this is of paramount concern.

Where one would have issues is in trying to purchase long-term care (LTC) coverage after having a diagnosis of metastatic disease

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@stageivsurvivor

I had no issue purchasing supplemental insurance plan G under Part D of Medicare having had a diagnosis of metastatic pancreatic cancer in 2012. It is a PPO type plan providing no restrictions n choosing whoever I want out of State. I have no restrictions that an HMO Advantage plan might have. Even during my working years, I steered clear of HMO plans as I never wanted to be restricted to who or where I could be been when specialized care was required. When one gets a catastrophic illness, this is of paramount concern.

Where one would have issues is in trying to purchase long-term care (LTC) coverage after having a diagnosis of metastatic disease

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Wasn't aware medicare supplemental plans had PPO offered. And that a cancer diagnosis didn't make you ineligible. Thanks for the clarification. I'll continue with the VA as they work closely with the cancer center a few miles away that I've been using since I was diagnosed with PACC in Aug. of last year.

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@56pan

Wasn't aware medicare supplemental plans had PPO offered. And that a cancer diagnosis didn't make you ineligible. Thanks for the clarification. I'll continue with the VA as they work closely with the cancer center a few miles away that I've been using since I was diagnosed with PACC in Aug. of last year.

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I too was diagnosed with PACC stage IV over 12 years ago. If you are not already aware, the US expert who has the most experience from studying and treating PACC patients is Christine Alewine MD, PhD and the NIH-NCI. She is conducting a study and also available for patient consults. I enrolled in her study a few months ago. Here is the contact info:
https://irp.nih.gov/pi/christine-alewine

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@stageivsurvivor

I had no issue purchasing supplemental insurance plan G under Part D of Medicare having had a diagnosis of metastatic pancreatic cancer in 2012. It is a PPO type plan providing no restrictions n choosing whoever I want out of State. I have no restrictions that an HMO Advantage plan might have. Even during my working years, I steered clear of HMO plans as I never wanted to be restricted to who or where I could be been when specialized care was required. When one gets a catastrophic illness, this is of paramount concern.

Where one would have issues is in trying to purchase long-term care (LTC) coverage after having a diagnosis of metastatic disease

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I don't think they can deny you if you choose original Medicare and a supplement when you first sign up for Medicare at age 65. It's my understanding that if you try to switch from Medicare Advantage (part C) to traditional Medicare (A/B) and a supplement, the supplement is or can be subject to underwriting, which would be difficult or impossible to clear with a cancer diagnosis. As you mention, the treatment and access options offered through traditional Medicare/supplement offer many advantages. I know the monthly premiums can be higher; my supplement premium is higher than my husband's. But we agreed that the security of full coverage outweighed the monthly charge. So far, so good.

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@stageivsurvivor

I too was diagnosed with PACC stage IV over 12 years ago. If you are not already aware, the US expert who has the most experience from studying and treating PACC patients is Christine Alewine MD, PhD and the NIH-NCI. She is conducting a study and also available for patient consults. I enrolled in her study a few months ago. Here is the contact info:
https://irp.nih.gov/pi/christine-alewine

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Yes, sir, I was aware of that clinical study and was released from it at the end of Sept. I was diagnosed as stage 4 at the end of Aug. 23 and went on Folfirinox for 12 cycles. Tumor, 6 cm. on my pancrease, several lesions on my omentum, and 3 tumors on my liver. At the end of Apr. this year, the only remaining tumor was one on my liver. Started the trial at the NIH with Olaparib in June, but the remaining tumor on my liver increased in size and I had to be released. Had another laparoscopic procedure 2 wks. ago to verify no cancer in my abdomen and there still was none. Biopsy on the liver tumor showed it as still PACC. I'll find out on the 12th from my cancer center how they've decided to proceed against the liver tumor, but they seem to leaning toward SBRT. And Christine Alewine is the best.

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@56pan

Yes, sir, I was aware of that clinical study and was released from it at the end of Sept. I was diagnosed as stage 4 at the end of Aug. 23 and went on Folfirinox for 12 cycles. Tumor, 6 cm. on my pancrease, several lesions on my omentum, and 3 tumors on my liver. At the end of Apr. this year, the only remaining tumor was one on my liver. Started the trial at the NIH with Olaparib in June, but the remaining tumor on my liver increased in size and I had to be released. Had another laparoscopic procedure 2 wks. ago to verify no cancer in my abdomen and there still was none. Biopsy on the liver tumor showed it as still PACC. I'll find out on the 12th from my cancer center how they've decided to proceed against the liver tumor, but they seem to leaning toward SBRT. And Christine Alewine is the best.

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My treatment that successfully treated stage IV PACC was using the original version of Folfirinox (20% higher) than (m)Folfirinox well beyond 12 cycles. An interesting history of how 12 was picked for number of cycles. It was an ASCO working committee of Pancretic oncologists that when asked the question of how many cycles was it felt to achieve N.E.D. and the patients could tolerate the side effects. And that’s how 12 was selected.

The problem with that is that N.E.D. is determined by using a conventional imaging technique (CT, MRI or PET). All have a lower limit to sensitivity of detection. So the can and likely is minimal residual disease (MRD) remaining (micrometastatic disease) when stopping for 12. My physical condition was otherwise very good and I advocated for doing as much Folfirinox as my body could tolerate. My oncologist was concerned with chemo induced peripheral neuropathy and it becoming permanent, so he did dosing of the first six cycles at full dose and then the next six cycles were just 5-Fluorouricil and Leucovorin at full dose. After those ‘“resting” cycles which were also effective against the tumors, it was back to full-dose Folfirinox. The alternating group of six cycles continued over 24 months resulting in a total of 46 chemo cycles with 24 being full dose Folfirinox and 22 of 5-FU/Leucovorin.

While I did develop neuropathy, it was not as severe as the average patient. It eventually resolved fully after several years. The aggressive treatment was determined to result in cure. I went on a PARPi after cycles 46 to prevent development of a new primary tumor as well as two other types.

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@stageivsurvivor

My treatment that successfully treated stage IV PACC was using the original version of Folfirinox (20% higher) than (m)Folfirinox well beyond 12 cycles. An interesting history of how 12 was picked for number of cycles. It was an ASCO working committee of Pancretic oncologists that when asked the question of how many cycles was it felt to achieve N.E.D. and the patients could tolerate the side effects. And that’s how 12 was selected.

The problem with that is that N.E.D. is determined by using a conventional imaging technique (CT, MRI or PET). All have a lower limit to sensitivity of detection. So the can and likely is minimal residual disease (MRD) remaining (micrometastatic disease) when stopping for 12. My physical condition was otherwise very good and I advocated for doing as much Folfirinox as my body could tolerate. My oncologist was concerned with chemo induced peripheral neuropathy and it becoming permanent, so he did dosing of the first six cycles at full dose and then the next six cycles were just 5-Fluorouricil and Leucovorin at full dose. After those ‘“resting” cycles which were also effective against the tumors, it was back to full-dose Folfirinox. The alternating group of six cycles continued over 24 months resulting in a total of 46 chemo cycles with 24 being full dose Folfirinox and 22 of 5-FU/Leucovorin.

While I did develop neuropathy, it was not as severe as the average patient. It eventually resolved fully after several years. The aggressive treatment was determined to result in cure. I went on a PARPi after cycles 46 to prevent development of a new primary tumor as well as two other types.

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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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@stageivsurvivor

I too was diagnosed with PACC stage IV over 12 years ago. If you are not already aware, the US expert who has the most experience from studying and treating PACC patients is Christine Alewine MD, PhD and the NIH-NCI. She is conducting a study and also available for patient consults. I enrolled in her study a few months ago. Here is the contact info:
https://irp.nih.gov/pi/christine-alewine

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@stageivsurvivor you are a participant in the study? Are you having signs that your cancer is returning?

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@stageivsurvivor

My treatment that successfully treated stage IV PACC was using the original version of Folfirinox (20% higher) than (m)Folfirinox well beyond 12 cycles. An interesting history of how 12 was picked for number of cycles. It was an ASCO working committee of Pancretic oncologists that when asked the question of how many cycles was it felt to achieve N.E.D. and the patients could tolerate the side effects. And that’s how 12 was selected.

The problem with that is that N.E.D. is determined by using a conventional imaging technique (CT, MRI or PET). All have a lower limit to sensitivity of detection. So the can and likely is minimal residual disease (MRD) remaining (micrometastatic disease) when stopping for 12. My physical condition was otherwise very good and I advocated for doing as much Folfirinox as my body could tolerate. My oncologist was concerned with chemo induced peripheral neuropathy and it becoming permanent, so he did dosing of the first six cycles at full dose and then the next six cycles were just 5-Fluorouricil and Leucovorin at full dose. After those ‘“resting” cycles which were also effective against the tumors, it was back to full-dose Folfirinox. The alternating group of six cycles continued over 24 months resulting in a total of 46 chemo cycles with 24 being full dose Folfirinox and 22 of 5-FU/Leucovorin.

While I did develop neuropathy, it was not as severe as the average patient. It eventually resolved fully after several years. The aggressive treatment was determined to result in cure. I went on a PARPi after cycles 46 to prevent development of a new primary tumor as well as two other types.

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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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@ncteacher

I don't think they can deny you if you choose original Medicare and a supplement when you first sign up for Medicare at age 65. It's my understanding that if you try to switch from Medicare Advantage (part C) to traditional Medicare (A/B) and a supplement, the supplement is or can be subject to underwriting, which would be difficult or impossible to clear with a cancer diagnosis. As you mention, the treatment and access options offered through traditional Medicare/supplement offer many advantages. I know the monthly premiums can be higher; my supplement premium is higher than my husband's. But we agreed that the security of full coverage outweighed the monthly charge. So far, so good.

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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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