Advice please... where do I make my stand..

Biopsy G(4+3) Last week.
Doc took his good old time and this G7 has been in me over a year now.
Back and leg pain occuring. Could be scyatica or ... more ominous
So this could be a clean treatment or it could be messy. I don't know.
No scans have been done yet do determine spread.

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I am posting this because honestly don't know what the best moves are here. I don't know what is coming at me now. You guys have a much better idea of what I am about to encounter. And you all seem to have decent brains.

Please post any opinion you have however small you think it is.

There are three in our fragile family.

-My autistic 6 year old that does not talk other than mands. She is about at the level of a three year old.

-Her mom. Has a GED. Good mommy but not terribly competent.
She is not too good a driver. Has crashed into a parked car before.

-Me.

-Ditto the white cat.

We were in Pennsylvania just above the Maryland line above Baltimore.

We left the area because we felt our daughter was not getting treated fairly and was not getting the proper treatment for her Autism. We packed up the RV and left.

Ended up in Arizona where my daughter is getting treated very well. She can get up to 40 hours per week of ABA which is more than she can consume. She is in process to get a communications tablet and training to communicate.

It took me over 6 months to get her up and running in this system.

Mommy and Daughter are now Arizona residents and have Arizona health insurance.

I however, am still a Maryland resident, and have Maryland insurance... that does work here in Arizona mostly.

Cue in Prostate Cancer...

In my mind I am thinking, if this gets messy, do I need to be in my insurance area and network?

Also, if I get physically weak, can I get this RV and circus back to Maryland later if I need to? I am strong enough now to do it.

Also, where ever I make my stand, and if I loose and am gone,
there will Mommy and Daughter be. I have to do my best to drop them in as safe a place as possible. There is a townhouse in Towson where they could live as long as they like. Its paid off.

But, if I move from Arizona, then my daughter gets screwed yet again, as we will be back east and have to get her services started up again, probably taking 6-9 months.

In Baltimore, Johns Hopkins is in my network and should be easy to get into.
They can run any tests/proceedures they want.

In Arizona, I don't know the hospitals so much.
I know there is one of those Cancer Centers of America, and there is a Mayo Clinic. But the local hospitals, I don't have a real feel for due to me not being a local.

I know the Mayo Clinic does not take my insurance and they are expensive, usually charging more than my insurance supplies. Maybe due to the 80/20 out of network costs.
So I would need to pay and forward my bills to my insurance. I am very much not rich.

So do I ride it out here and hope for a clean prostate pull or radiation, thus keeping Mommy and Daughter in their system and getting their therapies and stuff?

Or do I go to Maryland, get into the townhouse, and just let Johns Hopkins take over?
Do all of the furniture buying, get family into new insurance and therapy?

Are there any other issues you can think of that I am not aware of?

Thank you so so much for reading.

Groundhogy,
CTCA may do a good job, but they may not be as they seem. Researching them would be my suggestion.

If you end up near Tucson, University Cancer Centers aren't world renown, but for those needing the services of a medical oncologist they are quite good. Tucson Medical Center seems pretty good for primary treatments.

Groundhogy, JNF and Hal have given you great advice. The only thing i want to add, is this...

You said.... "Also, where ever I make my stand, and if I loose and am gone,
there will Mommy and Daughter be. I have to do my best to drop them in as safe a place as possible."

You are a long way from being gone. That just wont happen in the near future, focus on getting proper treatment, and you'll be ok. And as JNF said, get organized, list your issues and deal with them systematically, one at a time.

Groundhogy, as we have all said before, and we will keep saying: At G7, with minimal involvement (2 cores out of 40 is minimal), your chances of metastases is really, really low.

You've had some good suggestions about treatment options--is it too late to convert your insurance to something that works in AZ for the new year? Do request your uro to send your slides (all of them) to Johns Hopkins for a second read. It makes a difference. Then, start calling places. Get some good consults going.

The ACA mandates that you cannot be denied insurance (any insurance) because of a pre-existing condition.

Yeah, annual enrollment periods are probably past for next year, but there are exceptions, so it doesn't hurt to look into it.

So I pulled up healthcare dot gov and filtered to show only the top gold plans (there were no platinum plans offered).
I did not see any of those names on the Mayo Clinic insurance list.

Excellent suggestion(s), especially the one about getting guidance with respect to insurance from a reliable 'outside' person.

It's 20 years and counting since my diagnosis in 2001 and surgery in 2002. I've been back for other treatments. I still have cancer. I'm still living life as always - doing volunteer conservation work, wrestling through town politics, reading books, playing my guitar(s). It's not a death sentence. Well .. being born is a death sentence if we live long enough. But no need to worry about it.

When my wife is obsessing about something I remind her that we all just need to step back and look from a bigger perspective - though saying this annoys her to no end. In a few billion years the sun will swell to a red giant and incinerate whatever is left of the Earth. But even that's just local news. I've just read "The End of Everything, Astrophysically Speaking" by cosmologist Katie Mack. Even the Sun swallowing the earth ain't nothing. Billions of years after, that things get worse - much worse. So why worry about the little things?
Jim

Ground:

So, will you send your slides to Epstein at Hopkins?

Mel

groundhogy said...
Try this book... its very enjoyable.
Understanding of the universe and curved space began with explorers trying to map out the earth..

Poetry of the Universe: A Mathematical Exploration of the Cosmos

Thanks I've added it to my Kindle list.
Jim

Ground:

For a reasonable cost, it will insure max accuracy in your pathology. The # of cores is important as well as your G score. While not common, I've seen G change by 2 notches. Now and down the road these results will probably influence some decisions. What if you are a G8? Or a G6?
Anyway, it's up to you. It might seem like a hassle, but it is VERY easy to do.

Mel

Upgrades do seem more common than downgrades especially on surgical pathologies. I do support the use of either Epstein or Bostwick for an assessment as they are the very best specialists with PCa. A second read is one more data point to assist in the treatment approach.

I doubt your G4 will become a G3 with another read. The key is you treat to the highest G grade, not the score or some average. You have G4, albeit it a small amount. So treat based on the G4. The apparent small amount does give you some time to research and decide on a treatment path.

Regarding the second opinion on your slides, I can't see *any* downside to doing so. Good luck with everything--there's been some great advice on your thread regarding insurance. And know that you have every reason to think you'll do well and be able to continue to support your family for a very long time.