In November of last year, my husband had AUS surgery. The first ten days after surgery were fine, but on day 10, he became unable to urinate. 5 weeks later, after catheters, (both foley and suprapubic), 8 ER Visist and 2 overnight hospital stays, the AUS was removed. It took about 2 months after the surgery for the bleeding in his urine to stop (think late March). On Memorial Day, he had another episode of bright red blood in his urine. Then nothing for about 3 weeks, then escalating until now it's daily. Not every time, but often. We scheduled a cystoscopy, which was performed yesterday.
The doctor said the good news and the bad news is that bleeding is being caused by radiation cystitis. It's good news because there is no tumor. It's bad news because it's permanent, incurable, with no real treatment options. Exertion makes it worse. His job is very physical, and is apparently contributing to the problem. If it gets worse, he'll have to stop working. The docs are saying he should consider retirement at 62, or look for another line of work. (Early retirement (62) means SS pays next to nothing - some retirement savings, but not enough to deal with medical costs.) As with most of us, his insurance is tied to his job. This leaves me terrified. To add him to my work insurance is cost prohibitive (also, very high deductible, and so many coverage restrictions). Medicare doesn't kick in until 65. What he does now is what he knows how to do, so another career field doesn't seem likely.
Right now, He is on the EMBARK trial, and doing well as to his cancer. The trial is set to end in a year, so the treatments covered by the trial will then be the responsibility of our insurance and us. There is absolutely no way we can cover those cost without insurance (who could?), and no way to cover insurance premiums with substantially reduced income. The trial drug (Enzalutamide) is not on the "approved" list of drugs with my work insurance company, at all. So even if we found a way to cover the premiums, I'm not sure he could continue his current course of treatment. Any of you insurance-knowledgeable folks out there have any ideas? How is it you can work your ENTIRE life, save, pay taxes, pay premiums, contribute to your community, then have to fear for your ability to get medical treatment?
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My mother underwent some hyperbaric oxygen therapy treatments for her skin condition and I remember speaking to the therapist who told me that a lot of their patients come to get treatment for radiation induced cystitis and that the therapy does wonders. I was asking her about this as my father also underwent whole pelvic radiation for prostate cancer almost two years ago and is ok for now, but I know that radiation cystitis can show up much later. We live in Canada and hyperbaric therapy for this indication is fully covered by the provincial health plan so it must work. Please do your own research , but I just wanted to share this with you. Take care ❤
Shame on this the urologist! for saying there is no treatment for radiation cystitis.
I and many other pts with radiation cystitis have had very successful responses to hyperbaric oxygen therapy aka HBO. This is NOT some experimental treatment--Medicare covers this. This is considered first-line therapy for this condition
Get a consult with a hyperbaric medicine specialist.
Google this exact phrase : radiation cystitis AND hyperbaric oxygen.
You will find many peer-reviewed papers on HBO and radiation cystitis
I don't know where you live,but in Los Angeles area where I live there are several hospitals that have HBO units
I think that regardless of the treatment course selected, your husband seems to both need to quit his job and get insured. If you are working, can you add him to your policy? Usually, if there is a life changing event such as loss of other insurance, you can transfer to a spouse's plan.
Also, there may be an insurance exchange in your state (ACA) to purchase an individual health insurance plan that might be partially subsidized by your state. There may also be a state health insurance plan, if you qualify financially.
If he qualifies for SS disability, he might be able to get medicaid until medicare start (two years after starting SS disability). The disability income is pretty low though. Finally, if he can get another job in a supervisory role, either where he works now or elsewhere, based on his experience on the labor side, he could get insurance as part of the benefits package. I recommend that he be circumspect about any mention of having a medical condition to any management, until absolutely necessary. However, a labor attorney or the state labor relations board might be able to tell you his rights and swing a way to keep some form of his job and insurance.
I hope something works out. It really is totally based on what options you have that are feasible for you.
Thanks for the reply. He can get on my insurance, but the costs is prohibitive, and since we already make a large payment each month for our portion of his medicals, the added cost of insurance isn't manageable. Georgia did not take the Medicaid expansion, so he'd have to be federally disabled in order to go on Medicaid. He can't go on Medicare until he's either been disabled for 2 years or turns 65. COBRA is more expensive than adding him to my policy. Also, my policy doesn't have his drug (Enzalutamide) on the "approved" list. It's all just so much to take in. I feel like I've been lied to, and the American Dream is a myth. We've always worked and paid our bills. But this system is set up to make it impossible to obtain appropriate treatment without insurance. And insurance is priced so that it's unobtainable outside of employer sponsored plans. This isn't a matter of choice or of prioritizing one thing over the other. There simply won't be enough money coming in to cover the cost of insurance and medical care, food and shelter. It's staggering. We've always been firmly middle class. And because we're neither rich nor poor, there is no workable option that we've been able to find.
I totally understand. My wife and I are in a similar position. We rely on the out-of-pocket maximum for the healthcare insurance policy each year to limit our costs. I am 61 and my wife just turned 65. I had to go onto her insurance,which we are paying for. Meanwhile, I am trying to find a job that will provide health insurance.
There is discussion of lowering the medicare age to 60 if there is a change of the guard at the WH. However, the lower and upper house of the US Congress would need to pass it. I am not holding my breath but it is something.
Is your husband able to do another job that is not physical and has insurance? Also, there is a non-profit called Cancer + Careers that may be able to assist him in finding another career path cancerandcareers.org/en Also, the American Cancer Society has some information about this: cancer.org/treatment/findin... and cancersupportcommunity.org/...
I know everything seems like a dead end but perseverance will pay off. Talk to anyone who will listen, including state and federal agencies that deal in health insurance and disabilities, Cancer + Careers, American Cancer Society and others. Hospitals also may have subsidized treatment plans for people in your situation. Keep digging when you feel up to it.
You have a tough job. If you can create an outline of the potential options in more detail, expanding from the ones you already know, you may find some combination that works to bridge the gap between now and getting him on medicare.
Thank you. I'll look into those. We've considered him retiring and going to part time work. I'm not holding out hope for any part-time job with benefits. The change of guard in the WH can't come soon enough. And, since our congressional representatives gave us the "It's illegal for Medicare to negotiate drug prices" law, we certainly can't count on them for help. My job pays fairly well (not getting rich, but getting by), so we're usually just a little priced out of subsidies of any kind. And my mother lives in the same household with us, which requires us to count her income, meager though it is, into the total. I also can't wrap my head around the fact that we're now looking at asking for help after years of working and doing all the "right things".
I wonder about counting your mother's income. If she were a roommate, you wouldn't count her income. Has an accountant or tax person said you need to count her income? That's why couples get divorced to qualify for social security or other benefits....you don't have to count the other person's income. (Also a final option).
I work for attorneys. Household income is what is used in most states. I don't know how that would work with roommates. I didn't ask. In Georgia, it doesn't matter, anyway. If you're an adult without children, unless your deemed "disabled" by Social Security, you won't be eligible for Medicaid no matter what. (Georgia didn't take the Medicaid expansion.)
Yes, he would need to be deemed disabled which I imagine lowers your household income substantially. Just keep chipping away at it. I am sure some door will open!
I was diagnosed at aged 62, Gleason 7(4=3), lg tumor, etc. I am self employed with one of my jobs being very physical, the other required 14 +hr days. I had to give up on the 14hr days and slow way down on the other. The 1st year spent the usual (ridiculous) $18,000 on ppo insurance to seek other opinions/treatment out of state. My 63rd yr. income was reduced enough that I qualified for Medicaid. In this at least, it's fortunate to be single. Our medical system is completely disfunctional in terms of access(just venting here, but we live in the supposedly wealthiest country in the world and the largest sole cause of individual bankruptcy is medical care. Even most in the medical establishment might agree that being reduced to penury by a serious illness is not a recommended track toward recovery.) I have read about couples in your situation getting divorced so that one spouse can qualify for Medicaid. Tying medical insurance to work was a good way to attract workers in the 1940's, but it's no plan for actually taking care of people when they are sick and often can't be working.
To get SS disability can take awhile-went through that a decade ago with my ex wife in a serious illness and we went broke before it came through-still you could be fortunate and working with a doctor who specializes in the process, your application could go through on the first try.
Other than this, perhaps a good general financial adviser would be a place to start. It's absolutely insane that you have to worry about any of this. Some musician friends organized a benefit concert and Indi-go-go site and that helped. Perhaps something along this line might help pay the premium for a decent individual plan. If treatment can take place in your state, the Obamacare market place rates are income sensitive and subsidized.
My heart and support go out to you and your family.
Thank you. Apparently, the Government caught on the the getting a divorce to qualify for Medicaid thing. Now they calculate income by household members and not spouses. We would even have to calculate my mother's income into the mix, since she lives with us. You are correct, that our medical system in dysfunctional. We pay 2 1/2 times as much as other wealthy, industrialized countries for the same healthcare, and yet our outcomes seem to fall somewhere between 11th & 27th. I still don't know what we're going to do.
You will do what is best . We all face a monumental wall . We do what we must to deal with the system . Could be worse for e could be in the third world with no help at all? Good luck 🍀
That’s great.. I battled With myself for three years of dark emotions. Sam -E helped lift my fog. Giving and receiving love is the reason to live . I like je the pic of the colorful houses above. Reminds me of Amsterdam ? ✌️
The ACA plans vary greatly as to what exact county you live in in each state.
YOU NEED THE HELP OF A VERY GOOD INSURANCE BROKER.
Start by asking the hospital you go to or want to go to for insurance broker recommendations The advice the broker gives you can vary greatly, meaning they can be helping themselves and/or a particular institution in some cases more than you.
So choose wisely. Couple of key points is to signup using the online portal only! don't send paperwork to someone such as a broker to do it for you. You can sit in the brokers office and do this together online in a few minutes.
Otherwise if you don't do this, it will restrict and cost you dearly.
There are so many tricks and hidden loopholes that you will never pick the proper least expensive plan on your own, trust me you won't.
And if you do this correctly you will be able to go to ANY hospital and Doctor anywhere in the US, outside of your immediate local network that accepts your brand of insurance in their state. They will file through their state plan which will file onto your state.
I do this with BCBS NC, it's also called "BLUE CARD" remember that exact phrase. And get care anywhere as IN NETWORK any where in the US.
Get in touch with a very good broker for the ACA plans.
It is because you live in the only industrialized country in the world that does not have universal single payer health insurance. You can thank capitalism for your predicament. As a PCa patient myself I am fully sympathetic to your predicament. You
Thank you for you comments. Often it is the very same people who have complained against the ACA or universal health care the loudest and in who's past voting pattern has been propping up our current system.
Yes. Agree entirely. Also want to be cautious about keeping this important site politically neutral. As if that we possible when you look at stories like COG1's and the fear and sadness behind them.
We are all afraid. And sad. And angry at people who scream about "that's socialized medicine but don't you dare touch my Medicare, my social security, my company's Federal Grants or my rent control."
I was caught at age 63 with a surprise PSA of 29, and no insurance, thinking I could slide on in to Medicare at 65, having had good health my adult life. I blew through $20K real quick in Blue Cross Covered Cal premiums and payments to doctors. Being a self-employed CPA, the only good thing was being able to deduct the health care premiums directly as an adjustment against income-- it doesn't go on Schedule C, rather on the 1040 as a direct deduction. A sometimes misunderstood deduction.
Could your husband speak to his company's Human Resources Group and because of his Pca ask to be transferred to a less physical position (desk job) in the company?
I guess you live in USA where many medical treatments are not fully covered by medical insurance.
Attempts to change the US Medicare system to cover all medical costs of everyone from cradle to grave seem to be an impossible dream because of the earnings doctors demand to get.
However, even in Australia where I live, Medicare has paid for huge % of care for my Pca treatments, but not for the the 7 PsMa scans so far and not for Lu177 last year that totalled about usd $31,000.
So a man has to save up at least usd $150,000 as a war chest to fight for his life when he gets older and gets things like Pca. Not many can save anything, and have only old age pension to look forward to and may not own a house.
If a man owns a house he might be able to get a "reverse mortgage" where doctors get paid by bank and at end of life, bank sells house and gives equity left to pay a wife or other heirs. Not everyone here has a large amount in superannuation fund.
Getting any surgery in areas which have had radiation damage is very risky because blood vessels are damaged and take very long time to heal when tissues are cut in any way.
Others here have made suggestions for hyperbaric treatment and getting funding from disability, Medicaid, but I am unaware of all aspects of how the US medical system works.
If and when his currently "free" access to Xtandi via the clinical trial may run out, you may be able to find some short term follow-on financial assistance and patient support from the Xtandi manufacturer .... in some cases at no cost. Here's a link to a Form that your future individually-prescribing doctor beyond the clinical trial could help you fill-out and send away for an eligibility/insurance confirmation process and future patient support & assistance. The Form also contains other contact information for patient support from the makers of Xtandi.
In the future, as you may be considering various health plans available in your area, this link could be one place to begin exploring for and comparing plans that also offer necessary drugs like Xtandi, and estimated annual patient costs.
I get my Xtandi via a secondary Blue Cross-like insurance to my Medicare. It's on the Formulary as a Prior Approval, Specialty Pharmacy drug. Had to jump through a couple of paperwork hoops with my local Oncologist to get it started, but now get a phone call each month and it gets shipped directly to my door, with a modest copay.
If he should be a U.S military veteran, Xtandi might also be available via the V.A. system.
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