Breast Cancer & Medicaid

BexSpartan

Does anyone know if there is help or advocacy out there for those of us fighting cancer and Medicaid at the same time? I am truly running out of steam here and I haven't even gotten to the hard stuff yet. I have DCIS, undergone two lumpectomies, the first with bad margins, the second, where they took skin, came back with cancer scattered throughout the tissue, so now we've moved on to mastectomy. I'm 44, not currently working as I quit my job a few year back to look after my blind father with Parkinson's and brother with Aspberger's. I also went back to school and am studying computer programming, so my schedule doesn't really include things like free time, or sleep. I was diagnosed thru a county program when I couldn't afford my $1500 copay for a biopsy, and put on Medicaid at diagnosis. So. Now that I am facing Mastectomy, I want to do both breasts, which I'm 99% Medicaid won't allow. I really can't go through this again in 5-10 years with my level of responsibilities, and don't want to have a half reconstructed chest for the next 40 years. I already have to travel from the east coast of the state to the west coast, because there is only one reconstruction provider nearer (an hour away, still have to stay over night, and the surgeon is in his mid-to-late 80's, so no thanks), which is going to be positively miserable, traveling for hours with strangers post-op, or with my brother, which, to be frank, isn't better, and would leave my father without assistance for two days. I could really use some help navigating this mess of deliberately obstructionist red tape, but all the familiar agencies are happy to give me yet another 800 number to call, take my information and add me to a list of people they have 'helped' for their donors without providing any actual help. I need answers. Just having someone get information or make some of the arrangements would be a huge help.

vlnrph

You certainly have more going on than any one person should have to handle! I'm not sure where you'll find answers but it might help to share your location. I'm guessing Michigan due to the Spartan reference in your user name and the east/west coast sides of the state. It's probably smart to avoid the elderly surgeon.

Is it any relief to think about the idea that, with DCIS being non-invasive, perhaps there is a little less time pressure in getting everything done? Government programs do not have a reputation of being fast or efficient in dealing with problem situations. Maybe your hospital or clinic has a support group or social worker who knows what to do...

You sound very intelligent and rational - I think you can achieve your goals, even pave the way for those who come behind you to have it easier. Wish I could give more practical advice. Hang in there.

BexSpartan

Florida. Medicaid does vary so much by state. i used to help people when I volunteered in MI, and it was a mess, but never quite this. I'm not sure if it is the cuts that have taken place, that it is just this much worse in FL, or a combination. I am finally making some headway through sheer stubborness. One of the fun features of my personality is that right before I give up I get really, really mad, and that usually carries me a good distance further. I've got a few maybes I'm chasing down as far as re-constructionists go, and I've got travel and accommodation covered wherever I have to go. I'll get there. If anyone else gets stuck, I've a slew of hard-won info to share, but as with everything, it's situation specific, but I'm happy to help if I can.

buttonsmachine

I've found social workers to be helpful. If you can connect with a good one, they know the system and can help you navigate it so you get what you need. Sometimes temporary housing is even available when you need to travel far for treatment. I do think the available resources differ a lot from state to state, unfortunately.

vlnrph

So I was half right on OP being an ex-Spartan who spent time in Michigan but is now in Florida (another state with east and west coasts which I didn’t even consider: my Midwest bias is showing!)

She knows herself so well, admitting stubbornness can be a good thing and is angry enough to make huge strides.

Keep at it because we want to hear about victories through perseverance which will also encourage others.

NotBrokenJustBent

Just know that when over the age of 55, all medical bills must be reinbursed from the estate upon death.

BexSpartan

@NotBroken - That isn't very clear. Any medical bills I accrue when I'm over 55 if they are paid by Medicaid? Since I'm 44, and on medicaid short term for cancer treatment while I provide care for my disabled family members and go to school, it's highly unlikely I'll need it then...I'll be back at work, and well out of treatment. Even if they want re-reimbursement for my care from my estate for my care now....so? I'm not buying a car, I'm getting cancer treatment. This isn't some questionable investment decision. In addition, I've been paying into SS my whole life, and am unlikely to get a dime of that back since the House and Senate keep raising the age and borrowing from the fund, so I'm not going to feel one iota guilty about trying to live long enough that my father doesn't have to see the inside of a nursing home. Also, I'll be dead. And as I have no children, I plan to spend every single dime I make before I die, and they can wring whatever pennies they can get from my corpse. So good luck with that.

NotBrokenJustBent

I too paid into the system my whole life. Since my kids won't be getting any inheritance due to this, I too will try to spend every dime before I go.

edwards750

You go girls. It’s about your survival not leaving your children with a windfall. You earned it and are earning it so it’s yours to do as you deem fit.

My DH and I help our kids as much as we can. We also buy a lot for our twin 2 year old grandsons. We enjoy doing that but not to our own detriment. We are far from wealthy and we have needs too.

BexSpartan - I so admire you for taking care of your family.

Diane