Primary vs. Secondary - HUH?

[Guest bean_si (Not Active)]

I've seen some posts that mention testing to see if the tumor is primary or secondary. I don't recall any such testing. How do they know it's primary? I don't recall my doctor specifically saying it was a primary tumor. I do know that after they found it, they did a brain scan, bone scan, PET entire body, and abdomen. I know that now even with the enlarged node and 5.2cm tumor which they THINK is necrotic, they are acting as though I'm NED - actually that I'm well enough to be considered for WBR.

I called my onc. this morning and told his office that I thought he should know that I was considering going to MD Anderson, Houston, for a second opinion. I would at least like them to take a look at the biopsy and see if it really is SCLC as all the doctors dx NSCLC from CT and x-rays.

I'll have to wait to see how my HMO handles this. I can't afford PPO because I'm now considered retired and am only receiving disability around 1700/mo. I'm not old enough to collect retirement without incurring a huge penalty. Maybe I should look into taking it out but that would mean when I'm old enough to retire without penalty, I'll be poor. The PPO would cost me $600/mo and anyway MD Anderson isn't in network.

[Snowflake]

Cat,

There's also Cancer Treatment Centers of America....

http://www.cancercenter.com/about-us.cfm

I don't know all the particulars with your insurance, moving to a PPO may be more than cost to you, not sure if you're guaranteed acceptance (as long as you pay for it) or if you would be declined due to a "pre-existing condition"...

DON'T give up. If you want to see a hospital that's out of network, get ahold of someone in the financial area to find out options - sometimes they will write off care - portions or complete! (Won't know until you try)

Oh, and that primary vs. secondary - if your doctor did all those scans and nothing showed up, you are dealing with a primary cancer. Secondary is actually a lung "met" from somewhere else - Lance Armstrong had testicular cancer and had mets to his lungs/brain/etc.

Becky

[jamie]

Hi-

Dont have any info. about insurance either, but did you ask about the tumor? Seems to me like its important to know for sure if it is the primary. Becky is probably right that it must be or you would have heard different...double check to make sure.

Jamie

[shelliemacs]

wow how similar we all are.

my dad is the same. he is still on disability from work, but they are pushing him to decide to retire or there going to fire him. he has been out since january.

the disability from his job comes so sporadicially b/c the secretary at his place screwed up the paperwork and it took 3 months for the first check that should have taken 14 days to arrive.

now he is considering ssd and for some who qualify there is a second form of disability depending on income level of the house hold.

since dad has no income and mom isn't sending him any from heaven i hope he'll qualify for this 2nd portion of it. oh and when they do fire him he'll loose his life insurance (job pays for it) and his medical that he'll have to pay for himself too.

[Elaine]

Shelly et al

About the life insurance provided by the employer.

Check the policy--get a copy of it.

In some cases if the employee is disabled, the policy can remain in effect without a premium paid for up to one year..

Also some policies allow the employee, your dad, to convert the policy so that your dad can continue paying the premiums after his employment ends.

DOn't take the word of anyone on this. Get the policy yourself and read it. After a certain number of days, if there were provisions in the policy, they may expire.

Elaine

[john]

bean_si,

I think it is probably primary. The problem of primary/secondary happens when they find a two tumors say in the lung and in the liver.

There are three situations

1) primary lung with liver met

2) primary liver with lung met

3) two primaries

In you case there is nothing else found in distant organs, so it is probably primary.

It is a good idea to get a 2nd opinion on the path report just like it is good to get a 2nd opinion most doctors treatment/diagnosis etc.

The armed forces insitutue of pathology created some of the new categories of lung cancer such as large cell neuroendocrine. I think they have the best pathologists. The offer 2nd opinions.

http://www.afip.org

Not sure about the insurance but good luck.

BTW some of the NCI designated centers like Ohio state offer free 2nd opinions. I think Fox Chase has $300 charge or so.

[Guest bean_si (Not Active)]

Yeah, I think this is the primary tumor. Only thing.........I was partly counting on the results of the PET scan to r/o other mets. It showed no mets but today my rad onc told me PET scans aren't as reliable with SCLC! The PET scan was ordered by med onc when they thought I had NSCLC - before the third biopsy (first two failed to get live cells)

I just spoke to my med onc nurse. I will bring in paperwork on Monday to have him send my biopsy slides to MD Anderson. I will also be picking up eight CT scan films. Only instead of films, the images are all captured on a single CD. Neat.

My primary referral person said that in order for the insurance to pay for a second opinion, I need a letter and documentation from my med. onc. stating it is of medical necessity! Hmmmm. As of right now, the mass seems to be only in my lung so I'll settle for 2nd opinion on path slides. I just don't think it's responding to treatment the way SCLC generally does. That's my oh-so-not-medical opinion.

BTW, Shelly, how can I be serious after seeing your hysterical ShellieMacs? Was that yellow guy doing tae-bo? And the other one was a bit ta-boo.

[stand4hope]

bean-si. Good luck with finding out if your lung tumor is the primary, and I hope you figure out a way to get that second opinion. I wish that financial assistance, medical insurance, etc. never had to enter the picture. I found out today that my dad's secondary policy to Medicare won't pay after 100 days in the skilled care facility, so I have to get into high speed to apply for Medicaid for him - then I found out that, under Medicaid, he can't have more than $1,500 in his account. We he earns a whopping $1,900 total a month in ss and pension, and they say that might cause a problem that he gets that much. Well - yeah - since the facility costs $10,500+ a month, I'd say we've got a problem.

SHELLY: I just read your edited profile - you are so funny. When I posted to you on another thread about your "tae bo" technique I was referring to that onery little rascal that was mooning us, then you changed it to a little angel. Were you trying to tell us that you are a little angel? Now it's some little guy doing the watoosie or something.

Peggy

[Guest bean_si (Not Active)]

Shelly, on your dad's SSD, my disability insurance people told me to apply for Social Security disability. I did so. THEN I was told that when I filled out my disability papers I had marked not to consider Social Security disability. I've no memory of this of course. THAT meant I was not allowed to take the Social Security check because it was considered in deciding the amount of my employee sponsored disability insurance. In other words, $1700 is all I get even though I've been told I am eligible for SSD. My SSD has to go to the disability insurance people!!!!! They were VERY firm in telling me if I get a check not to cash it or I would owe them.

I feel like I'm going in circles when I talk to these people. Their Rule #1: Don't let patient have enough money to live above the poverty line.

[betplace]

Bean-si,

Not trying to one up you dear, but the 5 months I was on SSI I got 564.00 a month plus 64.00 food stamps and this month I started SSD and get a whopping raise to 888.00, but my food stamps go down to 10.00. Of course if I am so audacious as to try to ean some money on the side to pay the bills this pittance isn't paying, then I loose the Medicaid! So until I am clear for at least a year I can't consider going back to work as I cannot afford all my tests and stuff and I don't qualify for a job that would give me immeadiate insurance that covers previous conditions. I think it is criminal how little they expect us to live on. Especially at a time when expenses are higher than normal.

Blessings

Betty

[Cindy RN]

MY! We are all experiencing the same problems-forget about the cancer-THE MONEY!! I worked as an ER RN one day and the next day I am off in the hospital getting biopsies! No disability from work, so I have to wait the 6 months for SS disability. I get almost 900 a month and some for having a minor child. She turns 18 in June and they will stop paying for her being here. Can we say COLLEGE? God has provided well for me but wouldn't it be nice if when a person has a disease such as lung cancer all the bills went away? Then we could enjoy the time we are given instead of worrying about how to pay for elec. bill so the a/c can stay running. Oh well I have gripped enough!

Cindy

[Guest bean_si (Not Active)]

Wow! Cindy, Shelly and Betty I thought I was the only one with that type of problem on board.

I joke that I've gone from Victoria's Secret to Walmart - only it's not a joke and these days even Walmart seems too expensive.

There is something so very hurtful in realizing that your health and how your treatment goes depends on whether you have the right insurance and if you have money to explore other possible cures.

I think it's time to send up one of my hot air baloons with a huge basket filled with good thoughts and prayers for all of us.

Cat