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Posted 11/7/2013 12:29 AM (GMT 0)

I was recently diagnosed and am still researching and sorting through my options.  This site has been extremely helpful.  Thank you to all of you who take the time to share and provide valuable information.

At this point, I've narrowed my choices to surgery (RALP), brachytherapy (HDR), and active surveillance.  I'm swimming in information (some of it contradictory, of course) on the efficacy and potential side effects of the surgery and HDR brachytherapy and am trying to look at all of that very carefully, while comparing it to the risks and rewards of AS.

One issue on which I have little information is health insurance.  Specifically, I'm wondering if my insurance will be affected based on whether I go through treatment now (surgery or brachytherapy) or go on on active surveillance instead.  I could see insurance companies assessing the risk differently for someone who "leaves it in there" and has known cancer in his prostate versus someone who has it removed or neutralized through surgery or radiation and, based on follow up PSA's, appears to be "cured."

I haven't looked into the Affordable Care Act in detail because I'm currently in a grandfathered plan, but I understand the insurance companies can't decline or drop you due to a pre-existing condition.  I do wonder, though, if choosing active surveillance versus treatment could affect my rates or choices of coverage (or perhaps even my insurability in my grandfathered plan).

Does anyone out there have any experience with this?  Thanks.

Posted 11/7/2013 12:37 AM (GMT 0)
I can't answer your insurance question but I can welcome you to the club no one wants to join.
Posted 11/7/2013 12:52 AM (GMT 0)
First: Welcome to HW. Sorry you need to be here but it's a great place to be.
Second: The hardest thing you'll face is deciding on what treatment to do. You're numbers suggest you're in the curable zone and likely any of the treatments will work for you. You'll drive yourself nuts trying to find an objective reason to pick one treatment over another. AS is a very good option and I think you should look into that. The important part there is "active" - keep monitoring and decide when you'll have to start some kind of treatment - like, when I get over a PSA of 4 or if the doubling time becomes 1 year, or whatever you and your docs think is best.

Third: I doubt your insurance will change just because of your DX or you choice of treatment but I am not an insurance expert (and no one really knows the long term effects of ACA or how politics might change it in the next few years). Is this an individual plan you have? Under my company sponsored plan, there is no change and my choice of treatment made no difference.

I'd just focus on picking the right treatment for you and worry about insurance later.

Keep us updated on your progress.
Andrew
Posted 11/7/2013 5:01 AM (GMT 0)
Welcome AtTheLake. I can't answer your insurance question.

Regarding active surveillance you may be aware of this, but in case you are not, I wanted to point out that you fail to meet the Johns Hopkins criteria (www.urology.jhu.edu/prostate/advice1.php) for AS, i.e.:

Very Low Risk Prostate Cancer

Life expectancy less than 20 years shakehead
Cancer not felt on digital rectal examination (stage T1c)
PSA density (PSA divided by prostate volume) is less than 0.15 shakehead
Gleason score is 6 or less with no Gleason pattern 4 or 5
No more than 2 cores with cancer, or cancer involving no more than 50% of any core on at least a 12 core biopsy shakehead

Low Risk Prostate Cancer

Life expectancy less than 10-15 years shakehead
Cancer not felt on digital rectal examination and/or small nodule (stage T1c or T2a)
PSA below 10ng/ml
Gleason score is 6 or less with no Gleason pattern 4 or 5 on at least a 12 core biopsy

There are other, more liberal, guidelines out there but I wanted to point this out as you already have a significant volume of disease and at your age it seems very likely you will eventually need treatment.

As you also may be aware there is about a 30% chance that you have higher grade disease that was not picked up on the biopsy. Do you know your ADC values from the MRI? These can give insight on the likelihood of aggressive lesion...
Posted 11/7/2013 6:38 AM (GMT 0)
Thanks for the responses.

njs, I appreciate all the info. I did see that I fall outside those parameters from Johns Hopkins. As you mentioned, some of the other proponents of AS have slightly more lenient standards, and I am on the cusp on some of those. At my age, I've always understood I'll most likely eventually need treatment, but recently, I've wondered if it's worth it to buy even a couple more years with no side effects. In the end, though, I'm still leaning heavily toward treatment.

I was hoping the MRI might provide some more info that would aid in the decision, but it really didn't. Just seemed to confirm the problem on the right side, but unfortunately, not much more info that that. It did say no extra-capsular extension, which is good, particularly if I opt for surgery. I didn't know about the ADC values from the MRI. I'll look into that.

Again, thanks for taking the time to reply.
Posted 11/7/2013 2:29 PM (GMT 0)
I would think that at least temporarily the AS treatment is a heck of a lot less claim payout that wither the surgery or the various flavors of radiation and that for the time being the insurance companies are glad to have dodged that bullet.

Not sure though, just an opinion.

Welcome, and good luck whatever you decide.

LupronJim
Posted 11/7/2013 2:30 PM (GMT 0)
Welcome.
I believe it will now be illegal to deny you coverage for a pre-existing illness. I don't think AS would change that.
Good luck on your decision and health.
Posted 11/7/2013 2:33 PM (GMT 0)
Your thought process makes sense. Obviously you need to balance the value to you of deferring treatment and its side effects against the risk of potentially worse side effects and/or unsuccessful cancer control that could come with treatment at a later time when you are older and the disease is more advanced. In order to realize the present day quality of life benefits of deferred treatment, you need to be comfortable enough that you are not constantly losing sleep about your disease process.

Regarding the MRI, while its specificity in detecting ECE is pretty good (so if the MRI had shown ECE, then you would have had to take that very seriously) you should understand that the sensitivity of MRI for detecting ECE is somewhat limited (i.e. rather high false-negative rate) so, while you are glad to see that, you do need to take it with somewhat of a grain of salt.

But besides just imaging the lesion, the other benefit of MRI with contrast (i.e. diffusion-weighted imaging) is to help assess the grade (aggressiveness) of the cancer. Again, while diffusion is not a perfect indicator, it has been shown to predict Gleason grade, so you definitely want to know your apparent diffusion coefficient (ADC) values to help inform your decision on potential AS.

Here are some references you may want to look at:
www.ncbi.nlm.nih.gov/pubmed/23614059
www.ncbi.nlm.nih.gov/pubmed/22923722
www.ncbi.nlm.nih.gov/pubmed/21182135
www.ncbi.nlm.nih.gov/pubmed/21502392
www.ncbi.nlm.nih.gov/pubmed/21406633
www.ncbi.nlm.nih.gov/pubmed/21177390
www.ncbi.nlm.nih.gov/pubmed/21436085
www.ncbi.nlm.nih.gov/pubmed/18555035
Posted 11/7/2013 4:17 PM (GMT 0)
You should also investigate the Polaris test which can be done at Bostwick labs from your biopsy slides. It's a new test to determine the aggressiveness of a tumor, but I don't know if insurance will pay for it. With an MRI and Polaris you should feel very comfortable with AS.
Posted 11/7/2013 5:50 PM (GMT 0)
I've asked a few docs about Prolaris (as well as Oncotype DX), and none of them seem too excited about it. The general consensus was that they're not sure enough of their predictive value in making clinical decisions. Frankly, I got the sense that they "just don't know what to do with the information" yet (I think both tests just became commercially available earlier this year).

The other issue is how much helpful information it can give me due to my age. The website says "Prolaris is a risk stratification tool, designed to measure the aggressiveness of a patient’s cancers to better predict an individual's relative risk of disease progression within ten years." The problem is, at 44, I'm looking at much further than 10 years out. (This is one problem with most of the statistical information on this disease -- it typically doesn't go past 10-15 years out.)

My growing sense with AS is that I'm just delaying the inevitable and maybe buying some more years without SEs. Every doc I've asked whether I will eventually need to have treatment has essentially said yes. So, if that's the case, it comes down balancing the benefits of those years w/o SEs against the likelihood that I'll recover better if I do the treatment while I'm younger (also keeping in mind the risk that we miss something on AS and it spreads before we catch it).
Posted 11/7/2013 7:34 PM (GMT 0)
lake,
about 2/3 of the patients stratified as low risk never progress under AS. The percentage is much higher for those who go on a heart healthy diet, exercise and do some type of stress relief such as yoga. So having to be eventually treated is not supported by the evidence. In your case with a much higher tumor volume and greater than 30% of cores being positive you would not be a candidate in most AS programs. Given this and your age the probability is high that you will eventually need treatment in the future.
Posted 11/7/2013 9:26 PM (GMT 0)
Regarding your insurance, the dx and your choice of treatments should not affect the plan.   Under the PPACA pre-existing conditions and health status have no bearing on you getting or keeping insurance and rates can not be changed due to your health (only age, tobaco useage, and location can be used).   The insurance may have an effect on the type of treatment and the provider(s) you choose.   Most anything major will need to be pre-approved. 
Posted 11/7/2013 9:37 PM (GMT 0)

John T said...
about 2/3 of the patients stratified as low risk never progress under AS. The percentage is much higher for those who go on a heart healthy diet, exercise and do some type of stress relief such as yoga. So having to be eventually treated is not supported by the evidence.


I'm no AS expert, but this statement puzzles me. Isn't everyone on AS low risk (at the outset, that is)?

And from what I saw from Hopkins (which, again, has some of the most stringent risk criteria for participation) about 59% progress to treatment by 10 years with median time to intervention of only 2.2 yrs (www.ncbi.nlm.nih.gov/pubmed/21464416)
Posted 1/6/2014 10:55 PM (GMT 0)
My husband was diagnosed with Prostate Cancer in June and since then we ahve been looking at all the options available to us including signing up for the Prolaris Study. It was free at the University of Miami - Cancer Center, so we said "why not".
We recieved the result today and we are cautiously very happy with what my husbands score was (-2.1 = Considerably Less aggresive).
Dr. is out of town until Wednesday........let see what he recommends.
Still have appt @ John Hopkins - one day session with all drs 1/31/13 to get recommendation.

We are very concerned about Active Surveillance. But I had Melanoma twice and had it removed and have to go to the Dr every 6 months for a check-up to make sure that it has not come back.

We highly recommend takin the Prolaris Test if you are considering Active Surveillance. There might be hospitals in your area participating in this free study.

Age 59.
2004 PSA 4
2004 Biopsy negative
2008 PSA 6.6
10/2012 PSA 8
6/2013 PSA 10.7
DRE cancer not palpable
6/2013 MRI of the prostate revealed cancer in left lobe and later it was reviewed by radiation oncologist and cancer was also found on right lobe.
7/2013 Biopsy of left lobe ONLY 2 of 14 positive <5%, both Gleason 6
Dr Recommended AS
11/2013 Biopsy of full prostate 2 of 14 positive one <5% the other 20%, both gleason 6
Dr. Recommended Davinci
12/31 bone scan and scan of the pelvic negative
Prolaris score -2.1
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