Do you think that costs could go over 2 million a yr? What's your annual total costs been up to?

Your oncologist recommended against de-bulking?

I can tell you that 3 rounds of chemo at MD Anderson was about 200,000 when factoring in oncology visits, blood work, the actual chemo,

Radiation was 193,000.

But, those were the cost presented to us at the time of service. MD Anderson, like other institutions have agreed upon prices with insurance companies. I think the insurance company actually paid 115,000 for the radiation and we weren't responsible for the difference.

Husband had an annual out of pocket max of $4000 and we met that each year since 2011.

I can't see hitting $2 million a year, unless something went terribly wrong which required a lengthy hospital stay in CCU or ICU.

I would not dismiss the (remote?) possibility of hitting $2m in a year. Unlikely for the average PCa guy, but two co-workers with advanced esophageal cancer maxed out our $2m yearly and $5m lifetime caps when we still had them. And you don't live long with that one. A year or three, but not ten.

One of our HR folks got in really hot water when she singled me out as the #3 cost out of 25k employees the year I had RT.

MsWW,

There have been some intriguing recent studies on de-bulking in the case of metastatic disease. These are not RCTs - just analysis of the SEER database, so there may be selection bias.

In this one, they noticed that men who had an RP after diagnosis with mets had a 75% 5yr PC survival vs 49% among men who had no surgical or radiation treatment.

And in this one, they found a 72% reduced risk of death from PC.

The above also noted improvements from brachy treatment (they didn't look at EBRT, but I would expect similar improvements).

The natural history of disease progression seems to be that the cancer principally spawns from the prostate itself and continues to do so when the prostate isn't removed or zapped.

This is a very tough decision - to undergo the SEs of surgery for the survival improvement.

As you suggest, it also makes sense to me to shrink the tumors first with hormone therapy. The recent CHAARTED clinical trial demonstrated a significant survival advantage to beginning both Taxotere and ADT at the same time at diagnosis of metastatic hormone sensitive disease -- 3 yr overall survival of 69% with the Taxotere vs 53% with ADT only.

- Allen

Post Edited (Tall Allen) : 5/28/2014 10:31:55 PM (GMT-6)

Once you move into the world of chemo and advanced HT, (and probably before), you'll need to be talking to a medical oncologist who (hopefully) specializes in PCa.

I have one. He is largely of the same opinions as my Uro/surgeon, but he is in the loop to be sure that when I get to that stage, I will not have to go through the months of waiting for a new patient appt with a doc you don't know.

Kukukajoo,
What I can tell you about my hmo is this. They will not prescribe off label. They will not refer to outside specialist if they can do it in network. They will not prescribe any of the newer drugs until primary treatment has failed. They will resist any way they can and most often one must exhaust the appeals process all the way to the state officials before they will budge. On the other hand, they have a few decent medical oncologists and they do their best to stay current on treatment options. He needs a good urologist and a good oncologist. They have poured a lot of money into facilities in our neck of the woods. Most new medications require a man to be hormone refractory before they can be prescribed. Simple logic is they are still largely unproven for long term use.

Kukukajoo
I'll agree...you are feisty!! Amazing how PC brings out the best in our warriors and their partners.
Your 2 mil out max may be allowed because its out of network. Good point about checking if its billable or negotiated. You seem to be on top of the medical and insurance issues which many find one or both overwhelming.
Many of the pharma companies offer financial aid for their products and for those on medicare there are several philanthropic funds that cover out of pocket RX costs. Check your plan for RX limits if prescribed by OON doc.
Most will say its difficult to receive SS disability the first time you apply. Mark sailed through the process without an attorney. SS did require a consult with one of their docs, and promptly notified him of when his benefits would start. He had to wait 2 years for medicare, although I understand that now some states and some conditions start medicare sooner. Combine that with a supplement and part D plan to almost eliminate your out of pocket costs.
Mark's most recent urologist had a frank discussion with us as he first met Mark in the very late stage in 2012. Although he chose radiation after dx, then seeds when his psa was rising after 2 years before lupron, he did agree that if he had a do over, it would have been surgery first, knowing how advanced the procedures are relative to the 90's.
Paul with your help will make the best decision for him.
Think about taking a few hours R&R over the weekend, maybe picnic at a lake or sailing, fishing..... It may refresh you and shine new light on your questions.
Dreamer44. Pat

KUKU:

I thought the max idea was no longer allowed, due to the ACA??

Regarding costs, I know for me surgery (with a top-notch surgeon) was $64K, 4 years ago (my cost was minimal, thanks to excellent insurance). I remember the salvage radiation was almost exactly the same cost-wise. Hormone therapy (Lupron shot) was about $5K per 3-month shot. Again, those are the ridiculous retail prices. The insurance companies negotiate a hefty discount and my cost was a very small percentage of that net figure. Of course, there is in-network and then out-of-network!

I know you are doing a lot of research. I did the same. But I would strongly suggest that you see a top-notch medical oncologist specializing in prostate  cancer.

Where are you located? One of the many strengths of HW is that many of us can give you advice on who to see.

Dealing with insurance can be horrendous, and, seriously, my heart bleeds for those stuck without any kind of insurance. (With the ACA, that number MIGHT be less -- I don't know)

Mel

Wow this is turning into an excellent and very informative thread. I want to thank you all and I will be referencing it again this weekend. I will look into the limits but I have a feeling the limits still stand. This company helped the govt formulate the whole Obama care structure and seemingly has their own agenda.

I looked them up and they have a horrid record- once even implementing an in house kidney transplant center but more than twice as many died waiting as received a kidney and the numbers were something like 300% more mortality than other transplant centers. They were accused of denying and delaying coverage as it was cheaper to let them languish and die, allegedly.

They are a much smaller network here than out west, but some decent coverage like Paul's cath supplies are going to be covered 100% now. The doc we fired told him he only needed one a month and just wash it with soap and water. No wonder he ended up with a raging infection. New doc prescribed him with 4 a day, more to be ordered if he needs them. Now if we could only find similar lube as the ones they use at the offices... the sex lubes and jellies are just not the same and neither is the old standby KY jelly the same anymore....

So much to absorb.... So much to consider. There are more out of pocket but where I used to work the out of pocket limits also included prescription copays so that was a blessing. I am on a medication that back then was over $4,000 a month and still am on it (but now generic is avail so approx. 2 grand now!). I just budgeted the full OOP into the mix and counted on hitting it at some point. So this insurance is crappy.

They also want everything in house as was said above. HATE to go out of house even when they need to. Referrals are needed for everything and get denied a lot from the sounds of it.

We are so far happy with urologist. Once the scan done today come back and if he decides in the lymph biopsy we will get an oncologist on board. Getting one dedicated to Uro or prostate will be near impossible I think. There is a good teaching hospital here in Atlanta (Emory) and maybe other places we could go... but only if insurance says its okay.

Based on what I have seen, some things are just an absolute fight... stress we don't need added to everything. They will learn though that when I get stressed is when I do my best work and give it my best fight!!

I will let you all know what I find about annual limits, and any other thing I think may be useful as well...

Hope everyone has been having a great day so far!!

PS I forgot to mention that mets prostate cancer to bones or organs or is hormone refractory is considered a compassionate allowances and is fast tracked for Social Security Disability once all the necessary forms and proofs are done. Allegedly in days vs months or years. Its supposed to be automatic...

http://www.ssa.gov/compassionateallowances/ is the whole list

Here is the page for PC
https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022282

How will marriage affect his coverage through medicare? Does anyone know? Also for medication assistance? As it is he now is single but to be under my insurance is considered a domestic partner and covered under my plan.

Do I understand you are in Atlanta?   So am I.    I will be happy to discuss my experience and research of docs and treatment in the area.

As Mel points out the PPACA eliminates the maximums in the insurance coverage, but those embodied in the employer mandate have been delayed.   With this administration we don't know what to expect, but I stand by my statement that you will not exceed the limits in the short term.

As far as social security disability, how old is he and is he now working?   Even if he qualifies for the compassionate treatment, it is still difficult and slow for most people to get ss disability.

Marriage really doesn't affect Medicare.   Every one goes on at 65 and you have to choose the coverage and supplements.   If he is old enough for Medicare, he won't be eligible for social security disability as he will claim a retirement benefit instead.

Chotti- I have autoimmune disease as well including a rare clotting disorder related to lupus (Antiphospholipid syndrome) I just call it sludge blood and lupus as well as more.... Dreaded and I am healthy now but flares now and again, seems every 2-3 years now. Hoping for along remission this time as feeling good at the moment.

Compiler- thanks! I think I was reading it as you were posting it!! It says there are a few exceptions to the caps so that's about useless. I guess I have to talk to benefits to see if they are an "exception" and I would bet that they are. Here is the wording on the link you provide above- another catch-22:

"•The ban on lifetime dollar limits for most covered benefits applies to every health plan — whether you buy coverage for yourself or your family, or you receive coverage through your employer.
•Some plans may be eligible for a waiver from the rules concerning annual dollar limits, if complying with the limit would mean a significant decrease in your benefits coverage or a significant increase in your premiums."


JNF- he isn't working now as he was laid off last winter and when we moved he didn't go back to his old job. They always have a down time dead of winter in his old job. He usually works other stuff but was so tired and had been thinking his 80-90 hr weeks all summer were to blame, but that just kept getting worse... Well you know the rest. He is only 47... I guess I should figure out how to put stats in the bottom of posts now, eh?

Anyhow, once you qualify for SSD you can get medicare after 2 years of qualifying for SSD regardless of age (I think regardless of if you are on it or if it was continuous I think). I posted links above. He will be looking to see what his benefit will be if that happens. The medicare may help with options later on, but really we need options now...

I would love to discuss your research and your story and experiences with you and am sure Paul would too. Where exactly are you? We are up the 400 just outside the perimeter....

As a RN I make pretty good money (some days more than I deserve, and other days not even close to what I deserve for the job being done!). BUT supporting two people on it, paying off college loans for three kids on my own(with one of those still in college) and all the household expenses doesn't leave a whole lot of wiggle room. We are still dealing with moving and relocation expenses as well as setting up a home here (not covered by employer). I am going back to my super frugal ways of couponing and other things. I really want to take Paul to Europe and other places. I don't want it all about catheters, injections, infusions, scans and all that crap. Paul literally worked his whole life and never took a vacation anywhere. We were planning the Europe trip for next year as well as looking at smaller ones in the USA. I LOVE to travel.