The A.S. Train Has Left The Station

Which kind of radiation is he a specialist in?

Hi, Uncle Harley,

Sorry to hear that you've been bumped of the AS train, but there are many ways to fight the beast from this point.

Tall Allen raises a good question - "Which variety of radiation therapy does this particular RO specialize in?" He asks this question to remind you that most RO's are only really expert in the specific treatment types that they can offer, so an RO who does IMRT (conventional external beam radiation) will likely not be well-versed in brachytherapy or other types of radiation therapy. A brachy doc will probably not be well-versed in SBRT, and so forth. There are several types of radiation therapy that could potentially be curative for your pathology, so be sure to investigate them all - by meeting with specialists in each of them.

Don't fall into the "trap" of asking one doc to comment on other treatments. I almost fell for this when I asked my urologist about low-dose brachytherapy (permanent radioactive seeds). He said something like "We almost never see this any more. It has been about 10 years since I've had a patient get seeds." Well, it turns out that their "captive" radiation clinic offers conventional IMRT, not seeds. . . BUT there is a highly regarded high-volume clinic that specializes in seed implants just 45 minutes away.

Do your homework. . . you owe it to yourself.

Uncle Harley said...
And I'm not on it any more. After a rising psa I had an MRI in July & 18 core biopsy 2 weeks ago. Not good news. 6 cores positive, 5 at 3+4, & 1 at 4+3. So one journey ends & another begins. Meet with r/o late this week to get his input. When I was first Dx 8 years ago I was sure if the day ever came for treatment I wanted surgery. Still leaning that way but will see what the ro says my options are with him. I've been following a lot of people here & have tried to learn from their experiences. I know no 2 are exactly the same. So, wish me luck & I'll let you know how things turn out.

So you bought yourself 8 years with no SEs? That is the way to do it when possible. Of course, a life time would be even better, but not bad!

Why can't you get SBRT? Or at least hypofractionated IMRT?

I suppose Alvaro Martinez in Detroit for HDR brachy is out of network as well?

I think a 45 minute drive towards the end of 44 IMRT treatments when you are feeling urinary urgency would be really difficult. You could keep a urine bottle in the car, I suppose.

I know some guys in my support groups changed their healthcare networks during the open enrollment period to get options not covered in their current healthcare network. It's only a few more months, so you might consider doing that.

Why can't you get SBRT?
I've been told sbrt is for low risk. I'm now intermediate.
Or at least hypofractionated IMRT?
Is that something that would be discussed on a 1st visit w/ ro?
I suppose Alvaro Martinez in Detroit for HDR brachy is out of network as well?
Yes it is. Out of network means higher deductable & higher out of pocket max.
I think a 45 minute drive towards the end of 44 IMRT treatments when you are feeling urinary urgency would be really difficult.
Not a problem. Plenty of places along the way for a pit stop.
I know some guys in my support groups changed their healthcare networks during the open enrollment period to get options not covered in their current healthcare network.
I thought about that too. Still an option.

My research indicates SBRT has been very successful for intermediate risk PCa. You might want to check into that. Tall Allen will probably set us straight very soon.

You may wish to dig a little deeper into the insurance issue. Our insurance initially denied going out of network for a consult at Cleveland Clinic; however, we got a 'ticket' on appeal since SBRT was not offered in our network. It took a little digging on our part to learn the insurance system. As it turned out it was cheaper for the SBRT than the IMRT standard of care in Pittsburgh. It was a win/win for both of us. Certainly worth the 2 1/2 hour drive each way for treatment.

Anybody care to share what their Medicare Advantage plan cost you out of pocket for IMRT. Just talked to the financial navigator at the hospital who said she talked to my insurance company. My coinsurance is estimated the radiation treatments at just under $5k!!!!!!! Oncologist team is on top of that. Surgery is only $325!!!!

Sorry to hear about your AS end and I agree with others it got you a bunch of years without SEs. I am in the throws of decision making about AS and spent some time thinking about exactly what you are in, the decision eventually. I do not have answers. I am going to PCRI conference to get emersed in the options and current research. Many experts in the field will be there. Here is a link to the conference http://pcri.org/2017-conference/#invitation

I wish you well. Denis

UH-

I hear ya! I always ask doctors, what is this going to cost? Universally, they answer "Someone in billing probably knows - I don't bother myself with that. Won't your insurance cover it?"

This is why medical costs in the US have gone through the roof. Medical service is the only thing we buy where we have no idea of the cost beforehand.

I agree with you completely that the cost of conventional IMRT is outrageous. PBRT is even worse. Why, one may well ask, should doctors be compensated by the number of radiation treatments the patient gets? The RO does the same amount of work whether we get 5 treatments or 44. (Actually, the one who plans to do it in 5 treatments does more work.) The only variable costs are 10 minutes of technician time, the electricity to run the linac and whatever wear-and-tear it entails. I think we would see all ROs shifting to SBRT and brachytherapy instead of IMRT if they were reimbursed by the total treatment instead of the number of fractions.

Tall Allen said...
UH-

.......I think we would see all ROs shifting to SBRT and brachytherapy instead of IMRT if they were reimbursed by the total treatment instead of the number of fractions.

Or it they were measured by treatment success rates!!

So sorry your AS run ended, but you had 8 "normal" years. I would advise surgery with your numbers. As you well know, there's that risk of ED or incontinence or both. You joined here 4 months after me, and for the record, I had neither. After failed surgery, my salvage radiation left me perm. incontinent, since I had my bladder fried by radiation. To this day, I have never experienced any ED. However, I had to be circumcised at age 64 (not common). To this day,
any sexual act is too painful to finish. Can't win. Good luck to you