New Patient Seeks Wisdom

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4/23/2013 1:27pm
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Replies: 34

Hello everyone.

 

Over the last couple of months my vision started worsening and from a pupil dilation test at my optometrist the shadow was noticed.In the last week I have been diagnosed with an ocular melanoma in my left eye. I don't know what stage it is, but the surgeon described it as on the smaller size.

I've now been booked in for a radioactive plaque in 4-6 weeks, which seems a long time away for something so serious. In the meantime I am getting my blood tested, I have chest x-rays to do, and an ultrasound of the liver in a weeks’ time.

I've been reading about my condition and I understand the liver I have somewhat abused down the years is the primary place this may spread. Plus for years to come I have a greater chance of something still being there and developing. All because I happen to have a freckle on my eye, and rolled a 1 on a very high sided die; amazing.

I'm hoping some wise heads out there can help me make the right moves.

I'm in Vancouver, Canada. So I'm pretty isolated in terms of driving somewhere for a second opinion. Are there any hospitals where the survival rate or treatment is known to be much higher than the norm?

The 4-6 weeks before treatment. Is that normal or should I be making a massive fuss to bring that forward?

Attempted to attach an composite image of my eye ultrasound, just in case it's useful.

Thanks,

Simon.

 

Ann Wilson - (4/23/2013 - 3:58pm)

I was recently treated with radio plaque for a small ocular melanoma at Shields & Shields at Wills Eye Hospital in Philadelphia Pa. Shields treats 500 new ocular melanoma patients a year. It was an easy decision for me to seek treatment that had so much experience. I did not wait for treatment ...in fact I cancelled an appointment and sought out the place of best immediate care. You have a lesser risk of mets with a small melanoma but my OM was also impacting my eyesight. You are on a mission to salvage as much vision as possible and also to save your life. So what might fit into your doctor's appointment book and what is best for your health may not jive.
Join the ocu-Mel list serve and you'll learn a great amount about being a good advocate for your survival. There is a list of international sites that so at least 50 percent of the practice in OM . Post questions here and on the ocumel list serve for insights from other patients. Ann Wilson

Ann Wilson - (4/23/2013 - 7:31pm)

Even a small OM can put you at risk of mets. If you look at the studies you will understand how important it is that you seek treatment ASAP.
You also need to preserve sight and the OM is impacting your vision.
There are OM specialists to research you can find lists on the OM sites look for physician finder for surgeons practicing in OM from this list.
Find out what tests/scans are needed for the procedure and find an ocular melanoma oncologist. As I mentioned you
May be at a lesser risk. But that is not saying you have no risk .this disease is rare and those who seem to survive are proactive, determined and fearless. Ann Wilson

absinthe - (4/24/2013 - 12:42am)

Thanks for taking time out to reply Ann.

I hope you are on the road to recovery.

I'm certainly going to investigate alternative places to be treated. If only there was a Metacritic site for doctors. Anyone with recommendations are welcome to pass them along.

Cindyann - (4/24/2013 - 7:13am)

I was treated in February at Will's. I had plaque radiation. I go back in summer for laser and Avestin. I will say to you not worry about the 4 to 6 weeks to get the plaque, while not easy mentally to deal with you will be fine otherwise. When I was first diagnosed I had scans with contrast and without, X-ray and blood work all in the same day. My doc told me I could get plaque within 2 weeks. I wanted to wait a bit longer for personal reasons. I was told by my doc who is an eye tumor specialist and has done plaque surgery that it was fine to wait the 4 weeks I had requested. This is a very slow growing tumor, a few weeks for me was fine. When I got to Will's 4 weeks later and had more images and measuring of my eye, it was EXACTLY the same size as 4 weeks earlier. I hopes this helps. I know mentally it can be frightening and much uncertainty . But keep the faith.....keep busy... and you're going to be fine.

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.

Cindyann - (4/24/2013 - 7:18am)

Oops sorry about typos :) Typing with ointment in your eyes can be a bit difficult :)

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.

Anonymous - (4/27/2013 - 4:35pm)

I'm curious about this - I never heard of anyone putting ointment in their eyes months after plaque. Is this common?

Anonymous - (5/1/2013 - 11:08pm)

What an incredibly insensitive questions, you have posed to the person who mentions trouble seeing with ointment in her eyes. Of course, many OM patients will use ointments for weeks, months and possibly years. It certainly depends on "their" eyes condition and complications.

I really do not care to post anonymously, but it appears,I must on this one.

Wishing you well in this journey :) hugs

Anonymous - (5/1/2013 - 11:12pm)

One more thing. I notice Cindyann does not mention how long she has been using the ointment. Would you happen to know that? Since you mention, you've never heard of someone using ointment months after plaque? :)

Anonymous - (5/5/2013 - 10:01am)

Cindyann wrote  a couple comments up, that she was treated in February at Will's. I didn't ask how long she had been using ointment, I asked if using ointment months after treatment was common. And no...I have never heard of anyone using ointment months after having plaque...that's why I asked if it was common.

Anonymous - (5/5/2013 - 9:54am)

You volunteered that you are putting ointment in your eyes and if this was a sensitive topic perhaps you might not have shared that.  I am sorry asking "is this common" was somehow offensive to you.  Perhaps in the future if a certain aspect of this disease is something you don't want to be questioned about - you don't post about it. 

joelcairo - (5/5/2013 - 12:18pm)

You never know what's going to set some people off. I'm not sure what "ointment" the original poster was referring to, but I have been on Prednisolone (corticosteroid) and Nevenac (NSAID) continuously for about 2 years. I originally went on them because of glaucoma that we were trying to get under control. At my last apointment, my ocular oncologict told me that my eye is doing the best among all his patients, so maybe that explains why he's in no hurry to get me off them.

Cindyann - (5/5/2013 - 12:43pm)

Yes, what you say is true. I'm the one who has been on the ointment since 3/4/2013 . I didn't think that was a long time at all. I do have another chronic eye condition that will keep me using ointments and drops the rest of my life. I'm glad to hear you are doing well. :)
It's too bad we had to get "off topic" in regards to MY eye ointment. Maybe a new thread should have been started with that question.

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.

Cindyann - (5/5/2013 - 1:00pm)

Joel, I was not referring to you when I said , "too bad we had to get "off topic". Hope your day is peaceful.

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.

absinthe - (4/24/2013 - 5:05pm)

I've checked my extended health plan, and to receive treatment outside of Canada I would have to pay 50%.

So approx how much is the treatment at Will's in your experiences?

Thanks,

Simon.

Ann Wilson - (4/24/2013 - 6:48pm)

You can contact Dr. Shields office at
1-215-928-3105 and the staff will be able to give you an estimate of the cost for the plaque for your tumor. If you do a google search for "ocumel" you will see a website for the ocular melanoma community. In the upper right hand area of the page go to "patient info" there you will find "doctor finder." It is an International listing of doctors; all doctors listed must spend 50 percent of their practice in eye cancer.
Doctors listed for Vancover include: Jack Rootman and Katherine Paton. Other doctors are listed in Toronto, Quebec City and Montreal.
To choose your doctor find out how many OM patients they treat a year. Your surgery includes a custom plaque that is created to tr e at "your" tumor by a physicist. Take time to look at the symposium videos listed here. Be sure to do some research and google small ocular melanoma tumors mortality. Size of the tumor, characteristics of the tumor, location of the tumor and your age are important
considerations. Make sure that you have a gene study of your tumor taken before the tumor is radiated if you want to get a prognosis of possibility of mets. Find out how many gene biopsys (sp) have been done successfully on small tumors...if this is important to you. Sometimes knowing the make up of the cancer gene can direct your treatment later if you have mets. Yes, patients with small ocular melanomas can develop mets.
Keep advocating for yourself. Be determined, informed and fearless.
I want to see good news here from you. It lifts all of our spirits when we know someone is on the right path forward.
Sincerely,
Ann Wilson

eyecancerny - (4/24/2013 - 6:11pm)

Hi Simon,

Thank you so much for your post. I'm sorry you have joined this special little club we call OM.  I was treated over 6 1/2 years ago for a small tumor on/in the optic nerve.  To date, I am healthy and doing well.  The following link will give you a listing of doctors that treat OM.  I know you're in Canada, so you might not have the options we have here in the states.  http://www.melanoma.org/learn-more/types-of-melanoma/cure-ocular-melanoma/key-OM-resources

There's a lot of confusing information online, so please be careful.  The Ocu-mel list serve can be a wonderful resource, but some people find it overwhelming. There are many other groups including Facebook pages and groups.  The following FB group, Ocular Melanoma Support, was started by a patient.  There are a number of people in this group that are from Canada. Total, there are about 300 group members from all over the word.  It would be good if you could connect with some of the people in Canada.  Here's the link:  https://www.facebook.com/groups/219970988124534/

Whatever questions you have, please ask.  As patients, family members, and caregivers, we can tell you about our experiences.

Best,

Anne Marie

Cindyann - (4/24/2013 - 6:30pm)

Simon, it would be difficult to give you a cost. As individuals with different medical histories, it would vary. My insurance paid for out of network and with the health keepers , it was low cost for me. Actually cost me much less than if i would have had care in network. However as one of the other posters pointed out you living in Canada might be different in regards to the cost of the treatment. The Facebook group is the best!! As Anne Marie stated there are quite a few of the members from Canada. I'll send you an invite :)

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.

absinthe - (4/24/2013 - 6:49pm)

I've sent a note to Wills to see if they can provide a cost range, but I understand it's hard to know what it would cost for me.

I just want to know if I'm looking at $20k or $200k. That makes the decision easier!

Cindyann - (4/24/2013 - 6:56pm)

I sent you a pm. Get on the group ... Try to stay free of anxiety .... It's hard. One thing Dr. Carol Shields told me was to stay off line researching, as it would scare the heck out of me. She was so right. I know, because , Initially I went online researching....Join a OM group and chat.....take care

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.

eyecancerny - (4/24/2013 - 7:18pm)

Hi Simon,

When I inquired 6 1/2 years ago, just the surgery itself was $25,000.  This did not take in to account the cost of the pre-surgical testing, hospital stay(1 night), anesthesiologist, nursing care, etc.  I would think it would be upwards of $100,000.  

Anne Marie

Anonymous - (4/26/2013 - 4:52pm)

"I would think it would be upwards of $100,000."

Not even close $100,000! Perhaps in some areas or countries where the surgery is done in-patient instead of out-patient, but not at Wills Eye Hospital. There is no separate nursing care, it is a line item in the bill and covers the nurse coming to the hotel where you stay or toward the end of the stay, calling to check on you. If the OP want's a detailed excel file with every bill outlined - post a private email address and I would be happy to reply privately.

absinthe - (4/26/2013 - 5:05pm)

Thanks.

I'm pretty set now on local treatment in the first place.

Perhaps the after care once I know if I am class 1 or 2 would be better served elsewhere.

Anonymous - (4/27/2013 - 9:24am)

It would be interesting to know what you end up paying locally.  I didn't shop around at all when I was diagnosed - I was in such a panic I didn't even think to check and see if Wills was in-network or not.  I was just very fortunate. If you are considered to be high risk, you will want to look into Dr. Sato in Philly - just down the block from the Wills Eye Hospital! He is considered by pretty much everyone to be the expert in high risk OM patients.  He does not treat the "eye" - you see him once your eye is treated by the OM specialist.

(BOLD for emphasis - not anger by the way - that is the way it is done online.)

eyecancerny - (4/26/2013 - 6:00pm)

Anonymous,

No need to quote what I said and use it on your post if you disagree with my statement. Then you bold your statement in a way to totally discount what I said.  You seem angry at what I said.  Just say you disagree in a supportive way.  

Many insurance companies in the US have separate major medical and hospitalization coverage.  Different doctors you see will bill separately and this increases the cost.

Simon, I'm glad you will receive treatment locally, it will be a lot less stressful than having to travel to the US.  Keep us posted on your treatment.

Best,

Anne Marie

Anonymous - (4/25/2013 - 11:45pm)

Prior to the deductions applying the in-network negotiated rates, it was about $36,250.  You should also see if they will honor negotiated rates for the proceedures - example: one of the proceedures was $12,000.  The AETNA in-network adjusted rated was $2,399.

The balance I owed was still more than I could pay on the spot because I have a $10,000 a year deductible.  I was able to enter into a payment plan where every month my credit card is charged, and as long as I don't miss a month - no interest.

Check out their website because they have a list of hotels that have a Wills Eye Hospital discounted rate, too. The Holiday Inn Express is walking distance from the Hospital and surrounded by terrific restaurants, too!

Best Wishes!

absinthe - (4/24/2013 - 6:40pm)

Thanks Anne Marie.

The list contains a doctor in Toronto who I presume I'd be covered to visit. Meanwhile my doctor is not in the list. Is that just because no patient has ever ventured to add him?

I've asked to join the Facebook group, request pending.

Simon.

eyecancerny - (4/24/2013 - 6:54pm)

Hi Simon,

I'm not sure why your doctor is not listed? Don't know how the list on this site was compiled, but will look into it.

See you on FB.

Anne Marie

joelcairo - (4/30/2013 - 7:12pm)

I think you're right to be concerned about the delay. The cancer must have been developing for many years, probably decades, but it stands to reason that at this point a 4-6 week delay at this point could increase the chances of metastasis by a few percent. By the seat of my pants I would guess that there's a less than 5% chance that the extended window could make the difference between metastasizing and not metastasizing, but that's not insignificant at all.

Be sure to push back on this timetable, not just passively accept whatever they give you. This has to be done carefully. I might start by asking questions about the need for timeliness. Also ask for a realistic (not sugar-coated) estimate of the earliest and latest dates the surgery might happen. I'm sure he'll have to agree that sooner is better in principle, so this opens the door for asking about being sent out of the city, out of province, or out of the country for treatment. All of these are possible if the medical condition requires it.

P.S. Be sure to get a biopsy done before the treatment. Should you wait until the results are back? I don't know. It's always possible that this is not cancer at all, or it's a different type of cancer that has metastasized from another part of the body. Maybe others can weigh in on whether it's necessary to wait for the results.

Anonymous - (4/30/2013 - 11:18pm)

I don't know anyone who waited until their biopsy (genetic test results) were back before treatment.  Those tests just determine the risk of METs - not whether or not this is cancer. Depending on which test you get on your biopsy, it can take over 3 months for the results to get back. They effect the future...not the present.

joelcairo - (5/1/2013 - 11:03pm)

The ability to perform either the monosomy 3 test or the Castle Biosciences test is a major reason for having a biopsy done, but I wasn't thinking about waiting for results of that kind of test. It just seems to me that there is information that could be gained from the biopsy that might affect the plaque treatment.

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