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New diagnosis -- suggestions on different radiation therapy protocols please

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Posted 2/22/2017 4:43 AM (GMT 0)
Husband diagnosed this week with PC. Need thoughts on the different radiation therapies - time they take to do, side effects, success rates etc.

Now, surgery is NOT an option because of the childhood allergies that turned into adult asthma which became mild-moderate COPD. Ergo 3-4 hours under a general anesthetic is a very very high risk of serious life-threatening complications or death from the anesthetic.

Only options that will be paid for by coverage are:

(1) radical prostatectomy with lymph node dissection
(2) radiotherapy with external beam radiotherapy
(3) androgen deprivation therapy and
(4) brachytherapy (and may be only low dose and not high dose)

Even if the coverage would pay for it, stereotactic body radiation therapy or proton therapy aren't remotely possible - no place within 800+ miles does it, not even the Cleveland Clinic does it.

Only options are external beam, brachytherapy and ADT.

Here are the details:

Age 68

PSA in 11/2014 was 4. In 3/2016 it was 5.2. In 4/2016 it was 5.6 where it has remained ever since.

Small nodule (smaller than the last joint of the little finger) on the bottom of the left lobe. Prostate is not really enlarged - only 38 grams, nor is it hard.

Biopsy on 2/13/2017:

12 samples - 6 on each side and in 3 parallel rows of 2 per side. 9 were clear and a cluster of 3 involved

#10 sample Bottom left base - sample next to nodule was a 80% bad and a 4-4 = 8
#7 sample on the outside of and next to #10 - sample was <5% bad and a 4-4 =8
#8 sample midway down nodule and above #10 sample was 5% bad and a 4-4 = 8

It is an adenocarcinoma.

There is no perineural invasion, no angiolympahtic invasion and no extraprostatic extensions.

(And please none of the "ohohoohhh you must send the samples of to such-and-such lab and have the Gleason double-checked" that fill these comments. The coverage won't pay for it. If anyone feels compelled to make such a suggestion despite my saying forget it, I will give you my address so you can send a check.)


MRI and bone scan are to get scheduled soon. Urologist doubts they will show anything - given the size of the nodule, low PSAs, limited samples affected etc - he puts the odds of metastasization at 3-4%. With any luck the scans can get done in the next 3-4 weeks - depends upon getting approval through the system.

The UCLA-CAPRA score is a 4 - intermediate risk even though the Gleason of 8 would say high risk.

There is NO choice as to a urologist or surgeon or radiation oncologist. So no point in asking about the success rate of Doctor ABC vs Doctor XYZ. Next medical facility with different practitioners is over 150-180 miles away.

So which would those who have gone through this choose among the different treatments based upon side effects, time involved etc?

Low dose brachytherapy

External radiation and then low dose brachytherapy

High dose brachytherapy

External radiation and then high dose brachytherapy

External radiation alone

ADT with any of the above?


Side effects that would interfere with life and working are a big deal.

Side effects from the brachytherapy that would mean avoiding to contact with people and pets would make such a treatment pretty prohibitive- I use a mobility Service Dog (a young female) and still have my 13 year old retired Service Dog and we have 2 Shelties and 2 cats. Can't send them away.
Posted 2/22/2017 4:58 AM (GMT 0)
I had 20 external beam treatments followed by low-dose brachytherapy. This combination is considered one of the treatments of choice for intermediate to high risk cases.

I've had a handful of side effects. The only troubling one was rectal bleeding that lasted several years. The bleeding was low grade. I usually had a small streak of blood on tissue or a slight amount present on my stool. It was really never a health problem other than a psychological one for me. That vast majority of men do not have this side effect.

Sexual function and urinary function are relatively unchanged for me. Some do have erectile dysfunction with this treatment but to a lesser degree than surgery.

I am hoping that I am cured. So far...so good
I would highly recommend this treatment or external beam with high dose brachytherapy.

Good luck
Paul

Gleason 3+4; 5/16 positive cores; average volume 30%; PSA prior to tx 4.8
TX-IMRT + brachytherapy; IMRT Nov. 2011; Brachytherapy Feb. 2012
PSA April 2012--3.6
PSA May 2012--2.5
PSA Aug 2012--2.2
PSA Nov 2012--2.9
PSA Feb 2013--2.8
PSA May 2013--2.1
PSA Aug 2013--2.3
PSA Nov 2013--2.5
PSA May 2014--1.1
PSA Dec 2014--0.8
PSA Jun 2015--0.5
PSA Jan. 2016--0.4
PSA Aug. 2016--0.4

Post Edited (PDL17) : 2/21/2017 10:01:10 PM (GMT-7)

Posted 2/22/2017 5:37 AM (GMT 0)
Another question.

I have read that the patient must make every radiation treatment - the every day of the week without fail.

Problem is that every 3 months on a Monday we must make a 550 mile round trip (that's for me - only 2 places within in 600 miles can do the nerve block on my shoulder. No nerve block = I can't even manage the drive to the grocery store so not going is not an option.)

If he must make every treatment every day for however many weeks, then probably nothing can be started until after May 1 (next trip for the block.)

If he could skip one day, then it could start sooner.



Is it possible to miss one day in the treatment program?
Posted 2/22/2017 6:29 AM (GMT 0)
Welcome to HW.

On IMRT with 26-40 treatment days, missing one or two isn't normally a big deal, but you do have to do the time, so if you skip a day, it will get added to the end of treatment. That is, if he's scheduled for 40 treatments, he does 40 treatments, even if there are a few days off in between. Tell the RO up front and they can plan for it. Normally not a big deal. I was scheduled for 26 treatments and smack in the middle was a holiday that the clinic was going to be closed for. They just added a day at the end to make up for it.

The restrictions on brachy generally aren't horrible. They advise against contact for a few days, but really as long as you're (or the pets) not sitting on his lap for hours, it shouldn't be a problem. The radiation from the seeds doesn't extend all that far away from the body and most gets blocked away. My brother, who did LDR branchy was advised to not let small children or pregnant women sit on his lap, but generally the RO wasn't all that concerned about it.

I did IMRT for similar reasons - heart/lung issues made surgery too risky. I am lower risk than your husband, so I only did the one treatment. Combining with ADT likely would be good, but that does add to the SE load.

Your URO is correct about the likelihood of scans finding anything at that PSA level and it's possible to still be confined to the prostate which puts you well into the curable range.

I worked during almost all of my treatment. Fatigue hit me bad towards the end and I ended up taking a couple of days off work, but mostly I'd go to the clinic first thing, do the treatment and then head to the office. Most of the SE during treatment are manageable.

Finally, there's a ton of hope that he'll be just fine. The treatments aren't fun, have their effects, but are doable. And don't rush too much. PC is a slow gower so you have time to make choices and get things planned the way you want.

Hang in there,
Andrew
Posted 2/22/2017 6:32 AM (GMT 0)
onthelake-

That's a very limited health plan you have, unfortunately. FWIW, SBRT is certainly available at Cleveland Clinic - Kevin Stephans does it there. I'm sorry that HDR brachytherapy isn't covered - that's very odd because it's been around so long. I don't understand why you are asking about it though.

The danger to pets from low dose rate brachytherapy is only if you let them sit in your lap for long periods for a few months.

I suppose the kind of external beam radiotherapy you're talking about is IMRT. Can you get hypofractionated IMRT? There should be no problem missing a day here or there.

For men with a high risk diagnosis, the highest cure rates are among those who have a combination of brachytherapy and IMRT (usually 25 treatments). But side effects may increase with the combination. IMRT can be given alone. Low dose rate brachytherapy is usually not given by itself for high risk men (although I know that Jay Ciezki at Cleveland Clinic does it.)

Long term (about 2 years) of ADT significantly improves the success rates of radiation for high risk men. It starts 2 months before radiation begins.
Posted 2/22/2017 6:39 AM (GMT 0)
Intheshop

Thanks!!

I doubt my 27"+ at the shoulder 95 lb mobility Service Dog is gonna climb on his lap - she is more a shove her head under your arm when you are sitting there type of gal.

Right now the tentative grade is T2a (pending scan results)

The UCLA score is more sophisticated in its factors - puts it intermediate (lowish intermediate at that)

Initial thought from the urologist was maybe 5-6 weeks radiation or brachytherapy. When we get to the radiation oncologist, I can get more details on options.

SO far from the literature (I live in databases - NIH is such fun to dig up the published studies) a multi-modality approach is more effective than a single modality.
Posted 2/22/2017 6:45 AM (GMT 0)
Tall Allen

HDR may or may not be covered. It merely says brachytherapy is covered but not whether is it LDR or LDR and HDR.

Cleveland Clinic website does not mention SBRT but does go on about their messing about with cryotherapy. CC is STILL 450 miles and 7 1/2 hours away from us - they set up the pain management protocol for me years ago and did it for years.

Yeah it is limited - go tell Congress it should provide more options with the VA Healthcare system. It takes weeks to get referred out of the VA system to local providers - even though the closest VA Medical facility (that can do more than give flu shots or prescriptions) is over 31/2 hours away.
Posted 2/22/2017 6:59 AM (GMT 0)
Well, if HDR brachy is covered, one of the best is Alvaro Martinez in Detroit. It has the advantage of leaving nothing radioactive inside, so pets are not at all a problem.

There are several risk stratification systems, and the UCSF-CAPRA score is just one. The most commonly used one is the NCCN system, which classifies all Gleason 8s as high risk. It really doesn't matter what you call it so much as using it as a guide to which therapy is most suitable. ADT is suitable as an adjuvant therapy if Gleason pattern 4 or 5 predominates. The same holds true for combination therapies because those kinds of cancers may be particularly radioresistant and may require extra dose.
Posted 2/22/2017 11:48 AM (GMT 0)
Just for documentation purposes, I paid out of pocket for a second opinion on my biopsy slides. With a high risk diagnosis, I wanted to make sure someone hadn't misread something. Epstein's lab confirmed the results, and I felt much more comfortable acting on the information after that.

That was in 2013, and it cost me $200 out of pocket. That's not chump change, but in comparison to what I've spent on treatments and medications, it is lost in the decimal dust. Rule it out if unaffordable, but it's quite likely you'll be spending a lot more in the next couple of years.

All the best to you as you work through the decisions and sea of uncertainty in front of you.
Posted 2/22/2017 2:14 PM (GMT 0)
Onthelake,

You are doing great with your research and questions. As to insurance coverage, Proton is more frequently being denied as not worth the added expense. HDR brachytherapy is covered across the board as is LDR (seeds). SBRT has been denied by some, but to my knowledge usually won on appeal as it is much lower cost. I know some that got it approved by simply going through the appeals process.

At age 68 he is on Medicare so we can easily clarify the insurance coverage. Is he using a Medicare Advantage plan or traditional Medicare with supplemental insurance? If he is on Medicare Advantage, he will be subjected to rather narrow networks that will affect choices. If on traditional Medicare and Supplemental insurance then there are no network considerations as he is free to go anywhere that Medicare is accepted.

To help us with practitioners, upon what lake (and where) are you? To TA's point, the best in the Midwest with HDR is Dr. Alvarez Martinez just outside Detroit. If I look at possible lakes in the US that may be closer than the Cleveland Clinic.

Regarding insurance reimbursements I always take the approach that I will call the company and ask, rather than to assume. If they say no, and I want it I will enter the appeals process. Very often this is all it takes as it is very expensive and time consuming for the insurance company to go through the process. Often small expenses (like second opinions) and gray areas are resolved in the patient's favor.
Posted 2/22/2017 2:16 PM (GMT 0)
Sorry, I just read that he is using the VA. Is that his only option or is he also on Medicare. That you are considering Cleveland Clinic indicates you are not completely limited to the VA.
Posted 2/22/2017 3:19 PM (GMT 0)
JNF I think he is automatically on part A it's part B that is needed to get on a advantage plan I have A&B along with a atvantage plan ever thought I am a vet and entitled to va benefits his problem is the same as mine was va to far or didn't offer what I needed Medicare become primary ins but as I found out va will pay for nothing unless pre approved by them I wasn't willing to take the chance I did 1 time and the hospital demanded their money so now I cover my 6 not because I like the set up but just in case
On the lake fight them for what ever he needs he served and is entitled to the best this country can give
Good luck
Posted 2/22/2017 3:25 PM (GMT 0)
on the lake- Sorry you must be here, but you will find a wealth of information. I'm no doctor, but although Gleason 8 is high risk, your husband only has 3 cores involved. That tells me his cancer is highly treatable. This forum has many members with personal experience with radiation. They should be able to help guide you. I guess your proximity to a care facility may be a challenge, but you'll figure out what works.

Good luck.
Posted 2/22/2017 3:49 PM (GMT 0)
To clarify Medicare.

A is for hospital costs and there is no current premium charged the beneficiary as it was paid during working years. B is mandatory, covers non-hospitalization non-drugs and costs a little more than $100 per month depending on status. A and B essentially pay 20% of costs. This is traditional Medicare and also requires D for drugs. With this combination you may purchase a supplemental plan from an insurance company that fills in the deductibles and co-pays. In this method, the provider first bills Medicare and then bills the insurance company for the amount not covered by Medicare (the 20% minus any applicable deductible).

Medicare Advantage, Part C, provides a private insurance company to cover all aspects. With this you are not covered by Medicare and no claims are submitted to them. You pay the B premium to Medicare, then Medicare pays this and a premium from A to the insurance company for taking on all the risk. With Advantage, you usually have drug coverage so you don't need Medicare D. Yhe provider submits the claim to the insurance company for reimbursement, but not to Medicare as they are not on the risk.

Generally, the most comprehensive coverage is traditional Medicare (A,B,and D) coupled with a supplement plan. This can be arranged to eliminate deductibles and co-pays. There are no restricted networks as you go anywhere that takes Medicare.

Medicare Advantage generally has network restrictions and builds in higher co-pays and deductibles in return for a lower premium to the insurance company than a supplement plan. Some Advantage plans have no premium.

None of this affects the qualification under VA plans and we have many men on this board that pick and choose as to how they use the VA and other providers. As 1013 states, the VA can claim a secondary position and make a person claim under Medicare first. Tha claims and reimbursement method will depend on whether they are using traditional Medicare (A,B,and D and a supplement) or Advantage (which does not claim against Medicare) which claims only against the insurance company.

So onthelake must understand the various coverage options they are enrolled in and consider how each works and what benefits they can derive to determine what treatment and which providers are reimbursed.
Posted 2/22/2017 5:22 PM (GMT 0)
JNF-

Thanks for explaining that so clearly. That is territory I have to explore next year, and I am bewildered by it. California is looking at adopting "Medicare for all" if ACA gets dismantled, but we have yet to see how that will work.
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