Start my OM journey this week!

I see the Shields at Wills Eye Hospital and I travel there from CT.  They are "in-network" for me – I have AETNA. I have an in-network deductible of $10,000 and a seperate out-of-network deductible of $10,000 – all of which reset January 1st.  So if you have insurance…most likely there is some way you can be seen at Wills and have it covered or go toward your deductible.

While I was in the waiting room, we overheard stories of people who traveled there from Michigan and Georgia.  Online, I have read stories of people coming there from all over the world. The only proceedure that was not covered by any insurance (and you just file the bill with your insurance company like the "old days" when you paid the bill then got reimbursed for a portion) is the $1,000 from the Medical School at the U. of Penn for the genetic testing of the tumor.

It will be 2 months since my diagnosis tomorrow. In that short period of time I have learned there are about 2,000 a year who are diagnosed with this cancer, and only a small handfull of doctors/hospitals who specialize in treating it.

My eye doctor saw my detached retina and suspected OM during a routine eye exam and he made sure I saw a retina specialist in less than 24 hours.  That doctor made the diagnosis of OM and sent me to Wills for evaluatement and a treatment plan the next business day. I had a small tumor (which was not observed by my regular doctor the weekend before when I went to the doctor for a headache and eye pain, because I was not dilated).

I go to one of the top retina specialists in the northeast – but he said "this is not my area of expertise, you need to see someone who specializes in THIS CANCER." He suggested Wills, a doctor at Yale who trained at Wills, and a doctor in Boston.  When I was leaning toward Boston because is is closer…he almost shouted at me…"I TOLD you where I would take a member of my family…WILLS!"  We went to Wills.

I had surgery a week from my original eye appointment. 

This is an aggressive cancer that needs to be treated by experts…many doctors never see this in their lifetime…if your doctor is not an EXPERT, specializing in this…you need to think about going elsewhere and tell your insurance company this, and they will guide you about your coverage.  Best wishes for 2013!!  Sue from CT

I see the Shields at Wills Eye Hospital and I travel there from CT.  They are "in-network" for me – I have AETNA. I have an in-network deductible of $10,000 and a seperate out-of-network deductible of $10,000 – all of which reset January 1st.  So if you have insurance…most likely there is some way you can be seen at Wills and have it covered or go toward your deductible.

While I was in the waiting room, we overheard stories of people who traveled there from Michigan and Georgia.  Online, I have read stories of people coming there from all over the world. The only proceedure that was not covered by any insurance (and you just file the bill with your insurance company like the "old days" when you paid the bill then got reimbursed for a portion) is the $1,000 from the Medical School at the U. of Penn for the genetic testing of the tumor.

It will be 2 months since my diagnosis tomorrow. In that short period of time I have learned there are about 2,000 a year who are diagnosed with this cancer, and only a small handfull of doctors/hospitals who specialize in treating it.

My eye doctor saw my detached retina and suspected OM during a routine eye exam and he made sure I saw a retina specialist in less than 24 hours.  That doctor made the diagnosis of OM and sent me to Wills for evaluatement and a treatment plan the next business day. I had a small tumor (which was not observed by my regular doctor the weekend before when I went to the doctor for a headache and eye pain, because I was not dilated).

I go to one of the top retina specialists in the northeast – but he said "this is not my area of expertise, you need to see someone who specializes in THIS CANCER." He suggested Wills, a doctor at Yale who trained at Wills, and a doctor in Boston.  When I was leaning toward Boston because is is closer…he almost shouted at me…"I TOLD you where I would take a member of my family…WILLS!"  We went to Wills.

I had surgery a week from my original eye appointment. 

This is an aggressive cancer that needs to be treated by experts…many doctors never see this in their lifetime…if your doctor is not an EXPERT, specializing in this…you need to think about going elsewhere and tell your insurance company this, and they will guide you about your coverage.  Best wishes for 2013!!  Sue from CT

I see the Shields at Wills Eye Hospital and I travel there from CT.  They are "in-network" for me – I have AETNA. I have an in-network deductible of $10,000 and a seperate out-of-network deductible of $10,000 – all of which reset January 1st.  So if you have insurance…most likely there is some way you can be seen at Wills and have it covered or go toward your deductible.

While I was in the waiting room, we overheard stories of people who traveled there from Michigan and Georgia.  Online, I have read stories of people coming there from all over the world. The only proceedure that was not covered by any insurance (and you just file the bill with your insurance company like the "old days" when you paid the bill then got reimbursed for a portion) is the $1,000 from the Medical School at the U. of Penn for the genetic testing of the tumor.

It will be 2 months since my diagnosis tomorrow. In that short period of time I have learned there are about 2,000 a year who are diagnosed with this cancer, and only a small handfull of doctors/hospitals who specialize in treating it.

My eye doctor saw my detached retina and suspected OM during a routine eye exam and he made sure I saw a retina specialist in less than 24 hours.  That doctor made the diagnosis of OM and sent me to Wills for evaluatement and a treatment plan the next business day. I had a small tumor (which was not observed by my regular doctor the weekend before when I went to the doctor for a headache and eye pain, because I was not dilated).

I go to one of the top retina specialists in the northeast – but he said "this is not my area of expertise, you need to see someone who specializes in THIS CANCER." He suggested Wills, a doctor at Yale who trained at Wills, and a doctor in Boston.  When I was leaning toward Boston because is is closer…he almost shouted at me…"I TOLD you where I would take a member of my family…WILLS!"  We went to Wills.

I had surgery a week from my original eye appointment. 

This is an aggressive cancer that needs to be treated by experts…many doctors never see this in their lifetime…if your doctor is not an EXPERT, specializing in this…you need to think about going elsewhere and tell your insurance company this, and they will guide you about your coverage.  Best wishes for 2013!!  Sue from CT

It is possible to get out-of-network coverage if your doc writes to your insurance explaining the uniqueness of your situation.  One letter from the team at Jefferson got me covered for a huge operation I had in Pittsburgh, all because that was the closest place offering the unique procedure.  OM is so rare, you might be able to strike a similar deal to get to Wills and Jefferson.  Worth a shot.

–Tom

It is possible to get out-of-network coverage if your doc writes to your insurance explaining the uniqueness of your situation.  One letter from the team at Jefferson got me covered for a huge operation I had in Pittsburgh, all because that was the closest place offering the unique procedure.  OM is so rare, you might be able to strike a similar deal to get to Wills and Jefferson.  Worth a shot.

–Tom

It is possible to get out-of-network coverage if your doc writes to your insurance explaining the uniqueness of your situation.  One letter from the team at Jefferson got me covered for a huge operation I had in Pittsburgh, all because that was the closest place offering the unique procedure.  OM is so rare, you might be able to strike a similar deal to get to Wills and Jefferson.  Worth a shot.

–Tom

Elaine, this is too important – just go to the Shields, worry about the business issues later.  They have the most experience.  I, too, was caught in insurance tangles, and it took 18 months to resolve, it's part of the fight.  At least go for a second opinion, and pay out-of-pocket for a consult if necessary.

Elaine, this is too important – just go to the Shields, worry about the business issues later.  They have the most experience.  I, too, was caught in insurance tangles, and it took 18 months to resolve, it's part of the fight.  At least go for a second opinion, and pay out-of-pocket for a consult if necessary.

Elaine, this is too important – just go to the Shields, worry about the business issues later.  They have the most experience.  I, too, was caught in insurance tangles, and it took 18 months to resolve, it's part of the fight.  At least go for a second opinion, and pay out-of-pocket for a consult if necessary.

Sue, 

This is something that CURE OM has been working on.  Yes, to answer your other question, this does happen to other people, in fact, it happend to my mother in law.  

Molly

Sue, 

This is something that CURE OM has been working on.  Yes, to answer your other question, this does happen to other people, in fact, it happend to my mother in law.  

Molly

Sue, 

This is something that CURE OM has been working on.  Yes, to answer your other question, this does happen to other people, in fact, it happend to my mother in law.  

Molly

The problem you may have – depending upon your current insurance coverage – is the fact that this is now a pre-existing condition (diagnosed in November). 

If you have existing coverage – then it may not be an issue. But if you are not currently insured, many (most) insurance plans will not cover something diagnosed during a period of time that you were not covered.  This is because people who have no insurance, often race to get insurance only after a diagnosis.  So the insurance companies, realizing this happens, don't cover things that were diagnosed within 6 months or a year of getting the new insurance coverage. If you don't disclose a pre-existing condition, they will audit medical records to make sure you didn't neglect to disclose it.  I just went through this with my son who "surprised" me by telling me he never took the insurance plan offered by his University last semester.  So he is uninsured.  He graduated 2 weeks ago and I said "now make sure you get insurance while you are still covered…this is very important because there are HUGE problems you can have getting insurance while uninsured, that you will not have simply getting a new policy while an existing one is in effect."  OOPS…something I need to tell you Mom.  I was FURIOUS.  But luckily he got the email today saying his application was approved and he will be covered starting January 1.

If I were you, I would call your insurance company today and ask if Wills (the Shields, Carol and Jerry) are in-network in your new insurance plan, and whether there will be any problem as far as covering a pre-existing condition. 

You may just have to pay out of pocket but waiting will not reset the clock. Not being treated is not a solution – this is very aggressive cancer. I will say that with a $10,000 deductible I could not pay my bills in full, even with insurance.  But what insurance does is, give you negotiated rates for proceedures and practices.  For example, one hospital proceedure was $3,500.  The AETNA negotiated rate was $775.  So with insurance, I paid $775 out of pocket.  If I was uninsurec, it would have cost me $3,500…although I know in some cases, doctors and hospitals will honor the negotiated rate. I know my treatments so far cost over $43,000.  My negotiated costs are just over $9,000 and once all the bills come in…will be close to my annual deductible of $10,000.  But I do know from personal experience – Wills Hospital, Drexel University, and the other providers I saw are willing to accept a payment plan.  I was in tears when I called after I got my first "big" bill of thousands of dollars.  The people in the billing department could NOT be nicer – they made me feel like I was not a deadbeat for not having an extra $10,000 laying around for unexpected medical expenses.  Yes…I will be paying these off for years.  But at least I did not have to go bankrupt due to cancer. The most important thing you can do is be pro-active and self-advocate.  This is the time to be assertive and NOT wait for the doctors to decide for you what is next…you have to get the ball rolling FAST!!!  Best Wishes, Sue from CT 

The problem you may have – depending upon your current insurance coverage – is the fact that this is now a pre-existing condition (diagnosed in November). 

If you have existing coverage – then it may not be an issue. But if you are not currently insured, many (most) insurance plans will not cover something diagnosed during a period of time that you were not covered.  This is because people who have no insurance, often race to get insurance only after a diagnosis.  So the insurance companies, realizing this happens, don't cover things that were diagnosed within 6 months or a year of getting the new insurance coverage. If you don't disclose a pre-existing condition, they will audit medical records to make sure you didn't neglect to disclose it.  I just went through this with my son who "surprised" me by telling me he never took the insurance plan offered by his University last semester.  So he is uninsured.  He graduated 2 weeks ago and I said "now make sure you get insurance while you are still covered…this is very important because there are HUGE problems you can have getting insurance while uninsured, that you will not have simply getting a new policy while an existing one is in effect."  OOPS…something I need to tell you Mom.  I was FURIOUS.  But luckily he got the email today saying his application was approved and he will be covered starting January 1.

If I were you, I would call your insurance company today and ask if Wills (the Shields, Carol and Jerry) are in-network in your new insurance plan, and whether there will be any problem as far as covering a pre-existing condition. 

You may just have to pay out of pocket but waiting will not reset the clock. Not being treated is not a solution – this is very aggressive cancer. I will say that with a $10,000 deductible I could not pay my bills in full, even with insurance.  But what insurance does is, give you negotiated rates for proceedures and practices.  For example, one hospital proceedure was $3,500.  The AETNA negotiated rate was $775.  So with insurance, I paid $775 out of pocket.  If I was uninsurec, it would have cost me $3,500…although I know in some cases, doctors and hospitals will honor the negotiated rate. I know my treatments so far cost over $43,000.  My negotiated costs are just over $9,000 and once all the bills come in…will be close to my annual deductible of $10,000.  But I do know from personal experience – Wills Hospital, Drexel University, and the other providers I saw are willing to accept a payment plan.  I was in tears when I called after I got my first "big" bill of thousands of dollars.  The people in the billing department could NOT be nicer – they made me feel like I was not a deadbeat for not having an extra $10,000 laying around for unexpected medical expenses.  Yes…I will be paying these off for years.  But at least I did not have to go bankrupt due to cancer. The most important thing you can do is be pro-active and self-advocate.  This is the time to be assertive and NOT wait for the doctors to decide for you what is next…you have to get the ball rolling FAST!!!  Best Wishes, Sue from CT 

The problem you may have – depending upon your current insurance coverage – is the fact that this is now a pre-existing condition (diagnosed in November). 

If you have existing coverage – then it may not be an issue. But if you are not currently insured, many (most) insurance plans will not cover something diagnosed during a period of time that you were not covered.  This is because people who have no insurance, often race to get insurance only after a diagnosis.  So the insurance companies, realizing this happens, don't cover things that were diagnosed within 6 months or a year of getting the new insurance coverage. If you don't disclose a pre-existing condition, they will audit medical records to make sure you didn't neglect to disclose it.  I just went through this with my son who "surprised" me by telling me he never took the insurance plan offered by his University last semester.  So he is uninsured.  He graduated 2 weeks ago and I said "now make sure you get insurance while you are still covered…this is very important because there are HUGE problems you can have getting insurance while uninsured, that you will not have simply getting a new policy while an existing one is in effect."  OOPS…something I need to tell you Mom.  I was FURIOUS.  But luckily he got the email today saying his application was approved and he will be covered starting January 1.

If I were you, I would call your insurance company today and ask if Wills (the Shields, Carol and Jerry) are in-network in your new insurance plan, and whether there will be any problem as far as covering a pre-existing condition. 

You may just have to pay out of pocket but waiting will not reset the clock. Not being treated is not a solution – this is very aggressive cancer. I will say that with a $10,000 deductible I could not pay my bills in full, even with insurance.  But what insurance does is, give you negotiated rates for proceedures and practices.  For example, one hospital proceedure was $3,500.  The AETNA negotiated rate was $775.  So with insurance, I paid $775 out of pocket.  If I was uninsurec, it would have cost me $3,500…although I know in some cases, doctors and hospitals will honor the negotiated rate. I know my treatments so far cost over $43,000.  My negotiated costs are just over $9,000 and once all the bills come in…will be close to my annual deductible of $10,000.  But I do know from personal experience – Wills Hospital, Drexel University, and the other providers I saw are willing to accept a payment plan.  I was in tears when I called after I got my first "big" bill of thousands of dollars.  The people in the billing department could NOT be nicer – they made me feel like I was not a deadbeat for not having an extra $10,000 laying around for unexpected medical expenses.  Yes…I will be paying these off for years.  But at least I did not have to go bankrupt due to cancer. The most important thing you can do is be pro-active and self-advocate.  This is the time to be assertive and NOT wait for the doctors to decide for you what is next…you have to get the ball rolling FAST!!!  Best Wishes, Sue from CT 

"The Center City campus surgery center is licensed by the Commonwealth of Pennsylvania and accredited by AAAHC and Medicare."

There is a link on the website to schedule an appointment or you can call: http://www.willseye.org/center-city-campus

I know what you mean about not being one to run to the doctor – it had been 3-4 years since my last eye doctor visit because my insurance does no have vision coverage – and because we almost never are sick…that is why I picked an insurance policy with a $10,000 deductible!  Hindsignt is 20/20 as they say!

Sue

"The Center City campus surgery center is licensed by the Commonwealth of Pennsylvania and accredited by AAAHC and Medicare."

There is a link on the website to schedule an appointment or you can call: http://www.willseye.org/center-city-campus

I know what you mean about not being one to run to the doctor – it had been 3-4 years since my last eye doctor visit because my insurance does no have vision coverage – and because we almost never are sick…that is why I picked an insurance policy with a $10,000 deductible!  Hindsignt is 20/20 as they say!

Sue

"The Center City campus surgery center is licensed by the Commonwealth of Pennsylvania and accredited by AAAHC and Medicare."

There is a link on the website to schedule an appointment or you can call: http://www.willseye.org/center-city-campus

I know what you mean about not being one to run to the doctor – it had been 3-4 years since my last eye doctor visit because my insurance does no have vision coverage – and because we almost never are sick…that is why I picked an insurance policy with a $10,000 deductible!  Hindsignt is 20/20 as they say!

Sue

Further, I think it is outside the scope of an optometrist's practice – they should send patient to an opthalmologist for diagnosis of any suspicious "spot".   I am indebted to my optometrist for noticing my tumor, and later when I talked with him, he said mine was the first he had seen in his entire career, and they only had something like a 4 hour course on ocular melanoma in school.

I agree 1000% 

My regular eye doctor is a Doctor of Optometry…but he was not confident of the diagnosis he suspected, and in fact…didn't even hint that the detached retina he diagnosed, was actually caused by a tumor. (He later called me and told me he suspected OM, but had only seen a couple cases in his whole career, too.

But like you recommended…he referred me to a retina specialist (the next day – first thing – made SURE I knew it was basically an emergency!)

That doctor is an ophthalmologist, which is a licensed medical doctor who can prescribe medication as well as perform eye surgery.

He diagnosed OM, then referred me to the Shields at Wills Eye Hospital who practice ocular oncology. They confirmed the diagnosis (and treated me).

THEY will refer me to Dr. Sato if my genetic tests come back in the high risk category for METS.

http://www.kimmelcancercenter.org/kcc/kccnew/clinicalcare/eye/

I agree 1000% 

My regular eye doctor is a Doctor of Optometry…but he was not confident of the diagnosis he suspected, and in fact…didn't even hint that the detached retina he diagnosed, was actually caused by a tumor. (He later called me and told me he suspected OM, but had only seen a couple cases in his whole career, too.

But like you recommended…he referred me to a retina specialist (the next day – first thing – made SURE I knew it was basically an emergency!)

That doctor is an ophthalmologist, which is a licensed medical doctor who can prescribe medication as well as perform eye surgery.

He diagnosed OM, then referred me to the Shields at Wills Eye Hospital who practice ocular oncology. They confirmed the diagnosis (and treated me).

THEY will refer me to Dr. Sato if my genetic tests come back in the high risk category for METS.

http://www.kimmelcancercenter.org/kcc/kccnew/clinicalcare/eye/

I agree 1000% 

My regular eye doctor is a Doctor of Optometry…but he was not confident of the diagnosis he suspected, and in fact…didn't even hint that the detached retina he diagnosed, was actually caused by a tumor. (He later called me and told me he suspected OM, but had only seen a couple cases in his whole career, too.

But like you recommended…he referred me to a retina specialist (the next day – first thing – made SURE I knew it was basically an emergency!)

That doctor is an ophthalmologist, which is a licensed medical doctor who can prescribe medication as well as perform eye surgery.

He diagnosed OM, then referred me to the Shields at Wills Eye Hospital who practice ocular oncology. They confirmed the diagnosis (and treated me).

THEY will refer me to Dr. Sato if my genetic tests come back in the high risk category for METS.

http://www.kimmelcancercenter.org/kcc/kccnew/clinicalcare/eye/

Further, I think it is outside the scope of an optometrist's practice – they should send patient to an opthalmologist for diagnosis of any suspicious "spot".   I am indebted to my optometrist for noticing my tumor, and later when I talked with him, he said mine was the first he had seen in his entire career, and they only had something like a 4 hour course on ocular melanoma in school.

Further, I think it is outside the scope of an optometrist's practice – they should send patient to an opthalmologist for diagnosis of any suspicious "spot".   I am indebted to my optometrist for noticing my tumor, and later when I talked with him, he said mine was the first he had seen in his entire career, and they only had something like a 4 hour course on ocular melanoma in school.