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Good news/bad news

nancyc
0 Recommendations

I saw my oncologist yesterday for my 3 mo f/u and review of my CT scans and labs. The good news, the CT scans showed no progression of the breast or neuroendocrine cancer. For some reason, the ventral hernia seen on scans I'd had done in Pennsylvania when treating there, wasn't seen by the radiologist here. I have found out that I have signs of thoracic outlet syndrome (no wonder my right arm has been getting numb in certain positions) but my lungs and liver, previous locations of tumors look good.

On the other hand, my Chromagranin A levels have been elevating pretty rapidly That test is an indicator of possible neuroendocrine cancer activity. No problem, said my oncologist. He'll order an octreotide scan...one that picks up on metabolic activity of NEC, and we may be able that way to finally find the primary site, and get it out. Yay. Except that without health insurance, I can't do any of that.

Now, unless health care reform is quickly forthcoming, and I'm not holding my breath for that...I'll have to wait until next April when I qualify for Medicare to do anything about this. I'm not happy.

To save some of you who'll respond with suggestions that I apply for Medicaid, try to GET health insurance, contact my political representatives, the county social services dept, a medical social worker, the American Cancer Society, Lance Armstrong Foundation, Patient Advocate Foundation, Susan G Komen for the Cure, the newspapers, the President.....done, done, done and done. There IS no help out there for those of us who were middle class. Period. And so I wait.

Explore topics in this discussion:

Cancer Surgery Hernia Thoracic outlet syndrome Stress Cervical cancer

14 replies

Gentlenatured1

Hi, nancyc---

You can apply for the Every Woman Counts program online. It is through the CDC.

PAMELA

nancyc

I googled it, and only found California programs. There is nothing on the CDC site about it. Where do I find information about it?

IWILLBEATTHIS

Nancyc,

I know this might sound stupid and I know the outrageous cost of hospital and surgery but as I see it your life is more important and precious than anything.

Most doctors and hospitals take anything as a monthly payment as low as $10 just as long as they get something.

There has to be something than just wait. Have you talked with your onc on this? I'm sure you have. If there are calls I can make for you I sure would.

Thoughts and prayers are with you to get rid of that primary site sooner than later.

nancyc

In order to even HAVE the CT scan that I needed, the hospital required that I bring $150.00 on the day of the test, and assure them that I'd pay the remaining $900.00 within TWO weeks. There is no paying $10/month anymore. There are too many people without health insurance, and hospitals can't keep treating us without payment.
What you CAN do, is call your Senators and Congressmen and let them know that you insist that we have meaningful health care/insurance reform that includes at minimum, a public insurance option. Until Americans have an alternative to the rapacious FOR PROFIT health insurance industry, we won't have real reform.

sr2603

Does the hospital not have "charitable care" which you can apply for?

lynnwv

nancyc,

I just had a wild thought. I'm filling out paperwork for the Making Memories foundation. In their e-mail to me they mention that they have some limited grants for $1000 that can be used in anyway. See copied email below:

"At this time we also have a grant available for $1000.00. This grant can be sent almost immediately after we receive the doctor’s letter and 3 recent photos, the wish application is required to receive the grant.
The nice part about the grant for some is that they can then spend the money anyway they want. If you choose to request the grant please contact me back ASAP as the funds are limited for the grants. . .

I'd be happy to discuss these options more with you.
Feel free to give me a
call or email.
Bob Fritz
Wish Director
wishdirector@makingmemories.org
503-829-4486 office
503-680-3730 cell"

I know it's not an ideal situation, but you could possibly use that money for part of your testing?? I'm just bouncing off some alternatives.

I wish I had a better answer!!

Gentlenatured1

Hi, nancyc----------

I was unaware that the "Every Woman Counts" program was in California only.

When my local County hospital became aware that I had a large breast lump, they told me to go to Patient Accounts. From there, I was signed up for and approved to be on the EWC program.

When my tests were positive for cancer, I was immediately put on Medi-Cal (Medi-Care in other states). Years prior, Medi-Cal had denied me health insurance three times.

I would say to try to find out if your state MediCare has a program similar to "Every Woman Counts." Ask them about a free cancer detection program. Or call the Centers for Disease Control.

Or contact your local County hospital.

I know all the phone calls and letters are frustrating. But if you keep trying, you will find what you need.

Don't give up.

Hugs to you------

PAMELA

nancyc

Thanks for your suggestions ladies. Unfortunately, North Carolina is a "red" state, and not very good to those who need help. They have the breast and cervical cancer program (which wasn't taking any new patients when I called) but it only covers women BEFORE they're diagnosed. I've already gotten a grant from "Making Memories", and I just got off of the phone with my Senators' office and a conversation with constituent services.......they have nothing to offer or suggest. There is no "county hospital" in this county, and I only qualify for charity care if I'm hospitalized. It's pretty bad when your senators' staff tells you that there's "nothing out there" for you. Sigh.

Beachbabe

Excuse my French, but this just plain sucks. And Nancy, I worry about all the extra STRESS it puts on you to have to worry about paying for these LIFE SAVING tests. We do need reform, and it is up to all of us to squeak our wheels...for Nancy, for Terrie who just passed on, for ALL of us!

Dolphinlady

nancyc,

I'm sorry to hear that. That is real crap and it really gets my goat. You, me and everyone is entitled to what they need I believe. I can see you've exhausted your resources, but, I have to believe that there is still something out there to help alleviate the financial burden. I know my friends and family have suggested doing a benefit for me in order to get some help. I have held off feeling that I'm one of the lucky ones for now, but, when the time comes I think I will be taking advantage of that avenue. Is there possibly a group of people you can work with who would consider doing that for you? Don't know how you feel about it, but, I just thought it might be worth a shot. I will be praying for you.

Hugs,
Bev~

CSF

Nancy, I hear you. I've run into all those brick walls too.
Do you have anybody in another county who you can stay with for a few days/weeks - many county hospitals do have charity grants for folks like us (i'm using one now here in CT).
I know the red state thing - just moved from TX, but from what I understand, No Carolina is even worse.
Try one of the universities.
A benefit may be an idea.
Is any family member or friend willing to lend you the $150?
If you can get your hands on the $150 to get the tests done, you can just blow off the rest if you have to. What are they gonna do about it? I'm normally an overly-ethical person, but you have to do what you have to do.
Try www.patientadvocate.org. They may be of help.
Try to talk with your church, if you belong to one.
Got anything you can sell to raise $150? I say screw the $900... just give them what they want to get the test done and worry about later, later.
Best of luck.

Deanie

Nancy, I am soooooo with CSF. Too many middle-class citizens do not have any clue how precarious their healthcare situation is. Most of us are one health crisis and/or one job away from insolvency or lack of access. Your LIFE is important. Say or do what it takes to give you the best chance, worry about the consequences later...or not. Being sued is truly the least of two evils.

nancyc

I CAN pay for the CT scan that I've had. It's just that without health insurance, more scans and possible surgery is out of the question. I'm going to speak with my oncologist again to do some more brain storming.
I know almost no people here, since I just moved here a year ago, and those I do know aren't in any position to pull off something like a fund raiser.
Patient Advocate Foundation is one of the organizations that I turned to for help. They really weren't any help. They DO NOT provide any grants, and only help with co-pays for people with health insurance. If you HAVE no health insurance....sorry.
I spoke with my states' Democratic Senators' constituents' services dept this morning. That was my third politician strike out. Neither senators' staff nor my congressmans' constituent services staffers have provided any help, and they've pretty much said to a woman that there IS no help out there for me. Sux...huh?
I'm sorry if I sound so negative, but I have been at this for six months, and I've turned over every stone that I know of, or have heard of, and the professionals are telling me that there is no "there" there.
PLEASE....call the White House, your senators and congressmen and let them know that we need meaningful health care reform with a public insurance option, if not a single payor option, and we need it NOW. Knowing that you're doing that helps me, and millions of citizens.

LaGata

I have been pounding the drum for some type of medical assistance for years now. This is the first time I can remember, when I'm not the lone drum in the woods.

I am a Stage IV Metavivor now, but my husband, that does not work, has no insurance or income. He's not in the best of health and I fear that something will happen to him before there is anything meaningful out there in the way of health care. I'm self-employed, when I can work, and recieve Medicaid for my treatments and $727 disability from SS. That's it. That's all there is except when I can work a little job here or there. (And the transmissin went out on my car today! lol!)

And I'm so angry when an elected official gets on the television and repeats the old, gone, out-of-date statement that America has the best health care system in the world, so why change the way things are now? Not only have we lost that ranking, many years ago, but we are charged the highest and turned away the quickest when we have a health problem and no way to pay for it.

Public option, YES! No insurance? Go away, NO! This has to stop!!!

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