Start my OM journey this week!

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12/30/2012 1:30pm
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Replies: 18

Elaine Welch, Lancaster County, PA. 67 years old.
I had a mole on my left fore arm removed in 1976, tissue was lost, not tested. Within a year a bunch of freckles appeared where the mole was removed. When you're covered with freckles a few more didn't matter.
Over the next 7 years the area turned all colors. In 1984 I had a wide resection about the size of an orange off my forearm with plastic surgery. It was a Clarke Level 4. I had no nodes removed, no treatment, followed up for 3 years, no further issues.
In 2006 after years of heavy cycles I had endometrial cancer (uterus lining) and a hysterectomy. Nodes clear, no further treatments, no further issues.
This November 12, went to optometrist, needed new glasses. She found a tumor in my left eye. She wanted to wait 3 months and recheck. I went to my family doctor and he could easily see the tumor with a naked eye.
So now I will start this new journey on January 2 with an appointment at Penn State Hershey Medical Center.
So now you know what I know!
BTW, my father had his eye removed due to melanoma in 1970 at the age of 63. No further treatment. He died 12 years later from liver mets.
My big goal now is seeing my 50th wedding anniversary July 5, 2013.

Que Sera Sera

lak - (12/30/2012 - 3:35pm)

I am sorry you are in this situation. Wow that is quite a history. I was diagnosed with Ocular melanoma in  Dec 2006 I developed metastases in 2009. I have followed a lot of patients on this and other forums world wide.

Currently it is a debatable issue whether to have a biopsy or not of our lesions and which method to use whether to look at the genes that are wrong or just the gene expression.

 

However in view of your complex history it is imperative in you, I believe , that you have a biopsy to show the genetics of your tumou whether it is monsomy 3 or not and its GNAQ or GNA11 or not. This will help you to tell whether it is a primary of the eye or a metastases from your old melanoma. The treatment of the eye will be much the same but how you are treated after the eye has bee treated.

 

You should discuss this with your ocular oncologist that you wish to have the tumour genetically tested so that you know whether it is a primary eye tumour or secondary skin tumour. Not all centres can do this so if he says its not necessary ask to be referred to a centre where they can do it.

 

Not sure if this will make sense to you if you dont understnad then please ask.

 

Lesley

Hi Lesley,

I have been reading everything I can find on OM and will be requesting all those tests.

Thanks for the advice.

Elaine

Que Sera Sera

My sister in law lives in Lancaster and is a med tech at Hershey.  I have no idea about that facility's competence with OM, but you're only an hour from the world hub for our little bug -- Wills Eye and Jefferson in Philly.  I'd go there for a second opinion after Hershey.  Whomever treats your primary, be sure to demand a CT and MRI every 6 months.  If your Hershey doc suggests only annual scans, it's a sure sign they don't have enough experience with OM.

--Tom P. in NJ.

Keep Rowing!

Hi Tom,

 

I am keeping Phila.  in mind, I can take a train right there.  The confusion I am going to have is my insurance. It's new Jan 1 and I don't know how I can get sent to a doctor who is not a provider for that company. 

 

Thanks,

Elaine

Que Sera Sera

Sue33CT - (12/31/2012 - 10:29am)

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

Thanks Sue, That helps a lot. I'm hoping I can make an advocate of the the Hershey doctor.  I am dreading the business aspects more than the medical.

Elaine

Que Sera Sera

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

Keep Rowing!

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.

Sue33CT - (12/31/2012 - 10:35am)

"This November 12, went to optometrist, needed new glasses. She found a tumor in my left eye. She wanted to wait 3 months and recheck"

That story literally made my heart drop and my stomach flip.  How many others out there experience the same thing?

We all talk about promoting awareness and I always think to myself "people do need to get eye exams every year".

THIS story is an example of malpractice.  Clearly, it is not just the public who need to be made aware of this rare and aggressive cancer - but eye doctors as well!

CURE OM - is there some publication that all eye doctors receive, some Trade Association they are all required to be members of perhaps?  I think this story needs to be shared as a warning of some kind!!

I was going to wait the 3 months but had a checkup the next week with my family doctor and he said NOW, he is proactive that way, though I had to wait until January for my insurance to go into effect.

 

Elaine

Que Sera Sera

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 battle was lost, but the war must go on until a cure is found.

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 

I have had insurance, Medicare Advantage, for a few years. But now Pa has a new plan Medicare Assured Plus. It covers anyone who has diabetes or heart disease irregardless of income. So it's the best of two worlds where Medicaid is combined with Medicare and has fantastic coverage.  I have diabetes as does my DH so we both start tomorrow. 

 

We are not people who run to the doctor a lot so this is going to be confusing for me.  I am going to keep a journal of all visits, services and charges and try to keep the situation under control. 

 

Elaine

Que Sera Sera

And I will include phone calls!!

Elaine

Que Sera Sera

"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 saw the doctor yesterday at Hershey Med. He immediately sent me to retinal specialist who said I have choroidal nevi in both eyes. They took photos and I go back in 3 months.

 

Sort of anti climatic day.

Elaine

Que Sera Sera