Introduction and Results for my lovely wife

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10/8/2012 10:15pm
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Replies: 7

Good evening,

INTRODUCTION

There is no doubt in my mind that the first time someone is told there is something wrong with their health, fear and axiety controls every thought. For me, September 27, 2012 was that day... My wife, 34 years of age, was told to see a retina specialist who completed a test and told us there is a "large" tumor behind her left eye. Just like that, my entire life has changed. She has been very positive and I have been full of emotions. I keep thinking about what will happen, and most important, our life without her.

I apologize to her many times that day for feeling so down, depressed, and disoriented. I would die without her. We were told to see Dr. Carol Shields at the Will's Eye Institute in Philadelphia to get additional details. I was so scared because I didn't know what to expect. I kept thinking how unfair this is, but in the end this can happen to anyone.

I'm sorry for starting my introduction with doubt, fear, and lack of fortitude, but typing how I felt and hoping someone has some guidance on how to deal with my axiety and fear will be tremendous.  Oh God, I just love her so much. Before going to see Dr. Shields, I was reading about this for days.  I was only hoping for the best and tried to maintain a positive attitude for her.

 

RESULTS 10/08/12

I went with my mother-in-law, my mom, and my wife to Wills Eye Institute today.  After spending the entire day there, we found out the following:
 
 
 
Diameter: 21mm
 
Thickness: 13mm
 
Ciliary Body: Yes
 
Quadrant: Superior
 
 
 
Of course, this is not what we were hoping to hear. She is scheduled for surgery next Thursday to have her eye removed.  I'm fully aware the significant thickness, diameter, and ciliary body involvement are definetely risk factors.  With that said, I need help with the following:
 
 
 1.FNAB vs. DecisionDx-UM: The Wills Eye Institute offers the fine needle aspiration biopsy to check for monosomy 3; however, the DecisionDx-UM  seems to be more accurate. Also, the FNAB takes 3-4 months to get the results.  Can anyone recommend which options is better?  We truly want to know even though the size and ciliary involvement do not improve the results we would love to see.  If we decide to do DecisionDX, would we be ruling any crinical trials Dr. Sato may have in the near future since he is the oncologist and reviews the FNAB with the patient?

 2.Scan to check for Cancer: Since she is schedule for next week, we were told to get a MRI, chest scan to rule out the cancer spreading somewhere else. She had her blood work done which came up without any issues, but I know that does not rule out something found during a scan.  We live in central New Jersey and the Wills Eye Institute recommended Dr. Sato; however, his earliest available time is January 2013. There is no way we are waiting that long.  Do you recommend anyone in the tri-state area? 

 3.Tell the children:  We have a 6yr old very smart girl.  We are debating what to tell her. She already knows mommy has something behind her eye and the doctor needs to take a look at it. What are your suggestion?

 4.Statistics:  I'm a numbers guy. I'm profession is risk management and I rely on facts and objectivity most of the time; however, everything in life is not always black or white.  Has anyone know or have any statistics of patients with thickness > 10mm and Ciliary Body involvement that resulted in disonomy 3 or Class 1?  The Wills Eye Institute gave me a copy of the "Prognosis of Uveal Melanoma in 500 Cases Using Genetic Testing of Fine-Needle Aspiration Biopsy Specimens"  In this report from 2011, there is not a single patient with thickness over 12.1mm and size over 20mm.  However, the "Collaborative Ocular Oncology Group Report Number 1: Prospective Validation of a Multi-Gene Prognostic Assay in Uveal
Melanoma"
report from earlier this year shows some patients with thickness/diameter and ciliary body listed in Class 1 where the range covers the size discovered in my wife.   What are your thoughts or suggestions about this?
 
 
 
I appreciate any feedback. This is a very difficult time.  Thank you very much for your support.

To Man with a Lovely Wife,

Hold on, go a little slower.  Take a deep breath.  You are among friends who have all been through this before.  You have clearly done your homework and are way down the road of information gathering--much further than most at this point. 

It is a terrible thing that you and your wife have just discovered.  I remember my own panic at eye diagnosis.  I was convinced that I would not be alive the following year.  That was in 1980. . . yes, 32 years ago.

When I first got it there were no means to stage, or predict aggressiveness.  I haven't kept up with that part of our adventure, but I'm certain that others will weigh in.

After the surgery the only rush is to get scans, at minimum she needs chest, abdomen and pelvis--CT scans are fine, though Dr. Sato likes MRI of liver.  You can always do CTs first, then, if anything is found in liver, do MRI.  Or, do MRI of liver right away, with CT of chest.  The point is to determine whether she has metastases at this point.

If she does have metastases, then you do need to see an oncologist, someone who knows about Ocular Melanoma, right away.  If not, then you can wait to see Dr. Sato.  Since he is the foremost expert in your area (maybe in any area?), it would be worth becoming his patient, and, if she doesn't have metastases now, there is no harm in waiting.

As Dr. Sato will tell you, (and any oncologist who knows what he/she is doing) your wife will need to be scanned regularly (every 6 months?).  Do not EVER stop getting scans.  My cancer metastasized in 2002, yes, 22 years after first diagnosed.

Your very smart daughter.  I am both a psychologist and a patient with this disease and I have three children.  Although my children were older than yours when I was first diagnosed (pre-teen and teen), I think the principle is the same:  tell them as much truth as they can understand.  It is truly the best option.  She will know something terrible is going on anyway, and if she finds you are lying to her it will destroy her trust and sense of security more than if you are honest.  Even the word "cancer" doesn't carry for little ones the horror that we grown-ups attach to it; besides she will overhear it in conversations you have with others.  Honesty at her level is the way to go.

I understand that you are a numbers guy, but your wife is truly not a number.  Look at me, I have been Stage IV for almost 10 years.  Ten years ago the numbers gave me 6 months to live.  I am not a number either.  You should read Steven Jay Gould's essay, "The Median Isn't the Message"

http://www.cancerguide.org/median_not_msg.html 

Enough for now.  You have friends here, you will be OK.  You and your wife will deal with it.

Esther

Hi.
First I am no expert, but a patient with stage 3a (melanoma in a lymph node). I regards to tissue analysis, I have no idea about those you mention, but 3to4 month is an eternity to wait. And waiting almost three month for MRI and CT is pretty long. You may consider a physician(s) that are further away but in driving distance. Here in UT, people drive from the surrounding states to Salt Lake City to the Huntsman Center at U of U. I think that stats are crap, they are fine for scientific experiments, but your wife is an individual, and she will be either a +or a -, not 25%. So, take the high road and hang on.

Bill

A few things:

1.  Esther is right about the "Median" essay -- it's the best thing to read regarding stats.  There's a whole stats section on the cancerguide site that has great info you must read.

2.  If you're starting with Sato, that's the right thing to do.  Do you have Renee Zalinsky's contact info already?  Be usre to ask the Physician Assistant for pink parking passes that will save you twenty bucks at the LAZ garage.  There's free lodging to be had in Philly.  Let me know if you'll be going overnight.

3.  I'm 46, and my daughter is 11 going on 20 -- also extraordinarily perceptive and empathetic.    Kids of survivors is a pet topic of mine.  Here's what to do:

TELL HER, IN AN AGE-APPROPRIATE WAY, EVERYTHING.  NOW.

If you want some online guidance, check out tellingkidsaboutcancer.com.

Kids will mirror adult reactions, so if the conversation is dramatic and tear-filled, you will get one reaction;  if the conversation is straight forward, you'll get another.  My daughter has known everything about my cancer from the beginning.  Now that I'm Stage IV, she knows my cancer has spread, and I will have to remain in some sort of treatment.   I have never used the word "terminal" with her, because why do that?

So what do I say when the question of death comes up?  I say something like this

"Yes, some people die of this, but others live for years.  Will I die today?  No.  Will I die this year?  I really doubt it.  I will have to keep seeing doctors, but that's not much different from what we've experienced in the last year."

Kids have a distorted sense of time, and a basic need for consistency.  Remember when summer, or geometry class felt really long?  Your child does not need to know the 5-year survival stats.  She needs to know what will NOT be different this month, or this year.  Unless you're planning to move into a yurt or join the circus, reassure her about what will not change-- school, activities, etc.  If you make it as un-dramatic as possible, she will adjust.

also...

GET HELP.  NOW.

Your local cancer center probably has a child life specialist.  Go set up an appointment.  My daughter goes about every two weeks, and loves it.  If you can't find a good fit, switch facilities.  Look for some combination of these initials:  LCSW (licensed clinical social worker), CCLS (certified child life specialist), RPT (registered play therapist).  We also go to a parent/kid group once a month at the local Wellness Community (aka Gilda's House).  Having these resources in place now, having the routine be normal now, means it won't be a scramble to put it all together when I take the big dirt nap.

Here too, it comes down to what the child perceives as "normal."  You have quite a bit of control over that -- probably more than you think.

 

--Tom

Keep Rowing!

Sorry, I rushed to reply to the whole Kids theme that I overlooked some info!  You're in NJ!  I'm in NJ (Morris Plains)!  Where are you?

If you can haul it up here, my oncologist at Morristown Medical Center scans every 6 months, and can hook you up with the child life specialist there.  The parent/kids group I mentioned is in Bernardsville -- see www.cancersupportcnj.org -- right off 287 and 78.

Not to disparage any other regions, but we're in an excellent place for this little bug.  You're less than a day's drive from most of the experts you're likely to need.

Also, don't count Sato out.  I got my first appointment last year when a guy from Denver cancelled at the last minute.

--Tom

Keep Rowing!

As edamaser said, "Hold on, go a little slower.  Take a deep breath." Yes, you and your wife received a shock. And the fact that the primary lesion is in the eye is doubly distressing-- "Lose my eye?! How awful!" Of course you are worried. But melanoma is no longer the death sentence it used to be. It can be a long, drawn-out battle, but there are many, many people here who have survived and flourished for many years. And remember, the vast majority of people who log on to this forum when they are first diagnosed do NOT have a recurrance and simply disappear from these boards. So try to  take a deep breath and get your head around the idea that you and your wife are in this for the long haul-- a long, SUCCESSFUL haul! Panic is neither necessary nor helpful.

I looked at those two scientific papers you mentioned. They both talk about monosomy 3 as possibly indicating "metastatic risk". That is nice-- for researchers--but it's not relavant for patients. You already know there is a risk for metastases; how does knowing a particular per cent help her treatment? It doesn't. So who cares how long it takes to get the genetic testing results? You and your physicians only need to think about the most appropritate treatment for now. Again, as edamaser said, first get CT (or MRI) scans to see if she has any mets now. Also get the BRAF test (which only takes 2 weeks). Then you will have the information you and your doctors need to determine the best course of treatment FOR NOW-- which is all any of us can do.

I expect that you realize that you are posting on the ocular melanoma forum, and that's great. But don't forget that there is a general melanoma forum, too, where  you can find a lot of additional help and support. Since you thrive on facts and information, I suggest that you post to both forums.  Go to http://www.melanoma.org/community/mpip-melanoma-patients-information-page

Everyone,

 

I do not plan to disappear from the forums. Dr. Selig encouraged me to join, post, and get your feedback. She is an inspiration of courage and fortitude. Based on responses, i will follow up the advise to see a child specialist to learn about the best way to tell our daughter.  As far as the dna or chromosome test, i'm not as worried; however, i do want to get my wife scheduled for a scan this week and we are having a difficult time.  Finally, the stats are just that stats.

 

Thank you very much for all the responses. I will share them with my wife.    

You've gotten some great responses, and I don't want to repeat too much, but I did want to "second" encouraging you to tell your daughter (nearly) everything.   My daughters were 3, 7, and 9 when I lost my eye, and I told them it was cancer, told them I'd be losing my eye, we talked about what that would look like, and how one day I'd get a new eye made.  After surgery, I had an eye patch -- it had a huge plastic wiggly eye on it, as something the kids (and their friends) and I could laugh at, and lightened the mood a lot.  (It was great in public -- I preferred people's humorous responses to that kind of "don't stare" aura.)   I didn't always wear the eye patch around the house, so the kids saw what I looked like with just one eye.  3 years later, they are very comfortable with that, though I have a prosthesis and most days you'd never know any different.  My then-7-year old also enjoyed reading to me and bringing me food (we'd "picnic" in my bed) while I was recovering.   Kids are different, but she enjoyed taking on some responsibility.

As for long term prognosis, I didn't tell my kids how dire things would be if the cancer came back.  After it metastasized this spring, we've talked about it, and my kids are pretty clear on the prognosis, but like someone else said, we don't dwell on it.   It comes up sometimes, and we deal with it then.   But I very much agree that time is different for kids, and odds and statistics may not be very helpful.  Even now, with my cancer metastasized, there is time to deal with the more serious aspects -- two of my girls aren't really developmentally ready to understand what is going on, and the one who is has told me she just doesn't want to deal with it right now, so we aren't.  We have time -- as I get sicker, eventually, we'll deal with it then.   But I think finding that exact balance depends on the kid....

Ack, I'm late to pick the kids up, but sending very good wishes your way, and you sort through this crazy time -- it's scary and hectic and there's a lot to absorb.  Hang in there.....

 

Ande

 

p.s.  I highly recommend some kind of therapy or counseling too -- it's been huge for me to have a place to talk about the 'big" stuff over the last few years.  Just something to tuck away for when things settle down, because I know there likely isn't time to get into that until the medical stuff is more under control.....