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Shane18

Stage III Treatment in the US uninsured

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Hi, we just received the PET scan results and it turns out my father potentially has stage III A or B lung cancer.  Next is the biospy (EBUS) which is schedule a few weeks away.  He is based in Canada and hence, subject to the universal healthcare system as well, which can cause long delays in appointments and treatments.  

I am his son and I live in New York City, and I am exploring options in the USA for expedited diagnosis and also treatment.  I dont think in Canada we have the same access to dual or combination treatment and immunotherapy as is offered in the USA.  I have put in a request for an appointment to Sloan Kettering to hopefully get an expedited biospy and also to discuss treatment options. 

I am reaching out for any thoughts from the forum in general, I am just trying to do everything I can to increase his chances.  Also, does anyone have experience with paying for care out of pocket with this stage of cancer?  I am just trying to understand is the potential costs $100k, $500k, $1m??  I really dont know and I am sure its wildly different case by case but trying to set mine and my family's expectations. 

Thanks for ANY additional thoughts.  Thanks so much!

Shane

 

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Hi Shane.  You could contact the Lung Cancer HELPLine and they might be able to connect you with resources to help your dad. The HELPLine is staffed with oncology social workers and answer calls Monday-Friday. Here is more information about this free service: https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline

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Hi Shane,

Im very sorry about your Dad’s diagnosis, this is a scary situation that can really turn your world upside down.  I know a few Canadians who are receiving excellent lung cancer  care in Ottawa, state of the art therapy is available to them.  
 

Please keep that in mind medical bills are the number one driver for personal bankruptcy.  Cancer care is outrageously expensive and there’s lots of different therapies which are tailored to a personalized treatment plan.  I can tell you my first chemo/immuno combo was $107,000 for only one treatment.  I’ve been transitioned to targeted therapy (pills) which are $15,000 per month.  Just prior to my diagnosis I was admitted a few days for pneumonia, the bill to the insurance company was $250K.  
 

Purchasing an individual policy from the Marketplace (aka Obama Care) will run anywhere from $1,100 to $1,800 per month.  
 

There is some financial aid available which requires a savvy oncology social worker to navigate what can be complex requirements.  
 

Let us know how the appointment at MSK goes.  
Michelle

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Sorry that your dad and you have to go through this.

I had the same III A/B diagnosis as your dad. My treatment came in just under 900K, 12 years ago.

I had upper right lobe removed, developed pneumonia, had to be put into a medically induced coma for just over 3 weeks, spent the entire time (one month) in the ICU.

Once I got out had chemo and radiation treatments for about 8 months.  

Thankfully I had great insurance and married a daughter of a well known and respected doctor in our city, that I know a few of the doctors wrote off portions of my treatment when they could. 

Good luck to your dad and your family, there's plenty of us here that proves that it can be beaten. 

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Welcome Shane18,

Sorry to hear about your father's diagnosis; you've already had some good ideas and suggestions but will add our own as well.

My 70-y.o. husband was diagnosed with stage IIIB lung cancer last April. We have a Medicare Advantage Plan which has a cap on out of pocket expenses. However, even with the cap, we could not pay the patient responsibility portion of the bill.  After 2 months of tests, prep, chemo and radiation, the amount of bill if you had no insurance was $82K.  Our primary provider was a cancer care clinic approx. 100 miles away; we also had services from a local hospital 22 miles away, a Providence Health facility. We were encouraged by Providence Health staff to apply for financial assistance which we did and were granted 100% (no cost plus they even refunded co-pays we had already paid !) - it was time limited and ended on Feb. 7th. Since Providence is a charitable entity run by a religious order, we were so grateful.  Providence also suggested we apply for financial aid from our primary provider. In our contact with the cancer care clinic, no one had ever brought up the idea of applying for financial aid. I then inquired and found out there was a Patient Navigator  who supplied the application. Much to my surprise, financial aid was also approved at 100% with no time limitation which basically means they are accepting the amount the Medicare Adv. Plan pays as payment in full.  Then I applied for financial aid from the business that bills for the Scans which was approved for a 25% reduction in patient portion of bill (again ins. pays most of bill) - we are now paying for these on a monthly payment plan. We can manage to pay the smaller bills for lab tests, etc. as the insurance pays for most of the cost.

Hope some of the above may be useful.  It is hard enough to deal with a cancer diagnosis as well as the cost involved which can be overwhelming. My husband started treatment 6/17/19 & completed chemo and radiation on 7/29/19; started immunotherapy on 9/17/19 and will continue one treatment every 2 weeks for one year; there are "staging" scans approx. every 3 months during treatment (to determine if tumor, nodule has shrunk with treatment) & monthly lab tests. There will be follow-up scans approx. every 3 months I believe - not sure yet how long that goes on for.  If treatment is successful, NED no evidence of disease - that would be the best outcome of course.  So far, we've had good news since the lung tumor and lymph node have both shrunk considerably in size.

If treatment is not successful, assume there would be a 2nd course - 6 weeks radiation 5 days a week and 1 day a week of chemotherapy followed by immunotherapy every 2 weeks for a year.

There is a patient/survivor on this site named Robert Macaulay from BC, Canada, who posts on a regular basis - he could be a good source of info. Since I'm a "newbie" - will try to navigate your post so he sees it - will try but am not good at this , lol.

Georgia

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Thank you all very much with providing your generous thoughts and care, and openly sharing your own experiences. I can't thank you enough and will follow up on every suggestion you all have made.  Sincerely, thank you. Shane

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also sounds like figuring out how how to supplement the Canadian treatment (chemo/radiation/surgery) with other treatment (targeted/immunotherapy) in the US would make the economics much less burdensome. 

Hopefully I can find someone who has experience taking such a path.  

 

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