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Posted 3/25/2020 4:55 PM (GMT 0)
We just received David’s biopsy pathology. Of the 15 cores taken, 5 cores are 3+3 and 2 cores are 3+4.
A message from the doctor said that basically the whole left side of his prostate is cancerous and while he would normally recommend definitive treatment, at this time they are scheduling nothing. He said he feels a 6-12 month wait in treatment wouldn’t hurt and does not feel the need for any ADT unless we would just want to.
However, his message says nothing about the ECE and NVI on the MRI report. We definitely have questions about that. David is working on a response and will also send a message to the RO.
To further compound this issue, if David doesn’t find another role in his company before 5/31 (and that’s not looking very likely), he will be severanced and will lose his insurance. He would have to go on Cobra. I feel like we are living in the twilight zone.
Posted 3/25/2020 6:50 PM (GMT 0)
Sorry to hear about the diagnosis. And yes, at such a strange time. May I suggest you get a second opinion on the biopsy slides from Johns Hopkins, which is pretty quick and easy. It would be good to confirm the # of G6 and G7 cores and that could have an effect on how comfortable you feel waiting for treatment. PCa is very slow growing, but it's also a bit of a leap of faith when you have some G7 cores. I would probably want ADT in the interim.
Posted 3/25/2020 7:10 PM (GMT 0)

Michael_T said...
Sorry to hear about the diagnosis. And yes, at such a strange time. May I suggest you get a second opinion on the biopsy slides from Johns Hopkins, which is pretty quick and easy. It would be good to confirm the # of G6 and G7 cores and that could have an effect on how comfortable you feel waiting for treatment. PCa is very slow growing, but it's also a bit of a leap of faith when you have some G7 cores. I would probably want ADT in the interim.

Thank you. We do plan to have the slides sent to JH.
I think I’m more concerned with the possible neurovascular bundle invasion on one side and the extraprostatic/extracapsular extension on both sides. How serious are those things if accurate?
I know even 3+4 is slow growing but we’ve already been at this since last September and no telling how long it was there before being dx. Now they’re talking 6-12 more months before any treatment. If the MRI didn’t show those things and said it was fully contained, I wouldn’t be as worried about waiting.
Posted 3/25/2020 7:24 PM (GMT 0)
Seven is no small thing. If your husband is a young man, that is under age 70 or so, you might think about surgery, holding ADT and radiation in reserve. In a nutshell, a seven can kill. With a bit of luck, surgery + SRT and ADT (if needed) can yield many, many more years. Best wishes.
Posted 3/25/2020 9:31 PM (GMT 0)
Star, what does the Dr mean by "at this time they are scheduling nothing". Does that mean the hospital is not scheduling treatments in general? (Doubtrful) Or is it just a recommendation that nothing be done right now.

With evidence of possible ECE on the MRI, and pattern 4 cells, with a high volume of cancer overall, I'm surprised they are being so laid back about things. Far be it from me to question the professionals, but maybe I'm missing something. I would question a lot (which i am guessing you have done or intend to do, from my impression of your approach

Good luck. Tough situation
Posted 3/26/2020 11:38 AM (GMT 0)
Second the motion, Prato. G7 is potentially deadly, especially with extra-capsular extensions and neurovascular invasion. Leuprolide chems would likely slow down or stop the cancers' advance for quite some time.

I suspect that the hospital is working under emergency rules due to the COVID 19 outbreak and not scheduling any surgery at all if possible.
Posted 3/26/2020 12:35 PM (GMT 0)
Star, which doctor were you dealing with? A urologist (surgeon) or a radiation oncologist?

I would agree with the impression that the 'we're not scheduling anything' to be about Covid-19, not about anything else. Most hospitals are on 'emergency' only surgery protocols.
Posted 3/26/2020 2:43 PM (GMT 0)
Below is the message we just received from the surgeon. His initial message indicated they are not allowed to schedule any treatments except for emergencies due to the coronavirus. I’m thinking his initial timeframe of 6-12 months was about them dealing with the backlog of cases this coronavirus shutdown is causing. The tone of this message is a bit different than the tone of his initial message. I don’t think when he sent the message yesterday with the biopsy results that he was considering the adverse findings of the MRI.
We haven’t gotten a response yet from the RO.

Hello Mr. A....,

We will all be happy when this passes. I'm not sure if our normal of the past will be the same normal of the future, but hopefully we find a new constant.

Yes, the MRI findings are bothersome for extraprostatic disease. More often than not, the MRI underestimates the degree of cancer spread/volume of cancer. The true answer is in the microscopic examination of the prostate after it is removed, if it is removed.

I would not preserve the neurovascular bundle on the left. I also recommend that we perform a wide resection on the right given the findings on the MRI on that side despite the smaller volume of cancer identified on the right via biopsy. Unilateral nerve sparing surgery is not effective at maintaining erections. The MRI in the right apex is bothersome and I would like to avoid having to deliver both surgery and radiation (the radiation being necessary post-operatively for a positive margin if the right erectile neurovascular bundle is preserved).

At this time, we don't expect to be able to schedule patients for prostatectomy surgery until June.

In the interim, we could initiate hormone therapy. This would treat the cancer over the next three months and set you up for radiation therapy if you were to choose that treatment option.

I am sorry you're having to deal with this at this unusual time for our society. I believe we can safely treat your cancer while coping with the pandemic, but the time frame and sequence of treatments may need to be modified to adjust for the current crisis.
Posted 3/26/2020 3:24 PM (GMT 0)
I would do the hormone therapy--it's not particularly fun, but it would put the brakes on his PCa, which makes sense (to me) at this time of uncertainty. Additionally, based on the uro's comments about removing nerve bundles, I would put radiation pretty high on your treatment options, if it's not already there.
Posted 3/26/2020 3:27 PM (GMT 0)
Star,

That is a very useful and directive message. In it, to put it briefly, he says that his best treatment is by one of the radiation methods. He's basically saying, that if you do surgery, he's going to lose both nerves--and have complete ED forever. Also, he's saying that he will likely need post surgery radiation. And then he says he could have hormone therapy for a few months, followed by radiation.

Any time a surgeon says these things..he's saying that he isn't the guy you want, and that surgery is not the best choice.

I'd run with that.
Posted 3/26/2020 4:02 PM (GMT 0)

halbert said...
Star,

That is a very useful and directive message. In it, to put it briefly, he says that his best treatment is by one of the radiation methods. He's basically saying, that if you do surgery, he's going to lose both nerves--and have complete ED forever. Also, he's saying that he will likely need post surgery radiation. And then he says he could have hormone therapy for a few months, followed by radiation.

Any time a surgeon says these things..he's saying that he isn't the guy you want, and that surgery is not the best choice.

I'd run with that.

Interesting take. I don’t disagree.
Hubby replied to the doctor and said he wants to start the medication.

He’s begun over the last few months having some urinary issues. He’s concerned that if he were to choose radiation it could make those issues worse. He did ask the doctor about that.
Posted 3/26/2020 4:59 PM (GMT 0)
Well, I would continue to suggest that you guys talk to an RO, both about how it works and whether it is good or bad for urinary issues. There are other things that can be done to help with the urinary issues without going for the prostatectomy--which in his case pretty much guarantees the nasty side effects.
Posted 3/26/2020 8:21 PM (GMT 0)
I second Halberts comments.
The Hormone Therapy, i guess, is what would give you the extra time the Dr is referring to, it would hopefully prevent things from getting worse for the next 3-6 months
Posted 3/27/2020 4:47 AM (GMT 0)
Star,

David will emerge a survivor. That changes one's outlook and perspective dramatically and for the better.

My experience has some overlap with David's. I will offer some observations that, for brevity, may read like advice. Believe me: It is not. It is vital that David and you find the best path by talking with professionals and learning all you can about David's condition, treatment options and finances.

If David is a salaried, full-time worker and his job is at imminent risk, he should dig out his company benefits plan for 2020. If his employer offers short-term disability insurance, consider signing up. He'll keep his subsidized health coverage and either all of his salary or a portion of it (like 66%) until the STD period expires or David returns to work. In most jurisdictions, his employer can't fire him while on STD, but David will be free to look for another gig outside his company and resign at will.

If David doesn't resign before his STD runs out, it may auto-convert to long-term disability at a lower pay rate. It's not great, but it probably beats unemployment insurance.

The last option is to take Family and Medical Leave Act. Leave is unpaid, as is insurance. The only benefit to FMLA is that, if your employer approves it, they are typically obliged to place you in a similar role when you return from leave.

One last thing: If David goes on Androgen Deprivation Therapy, injections are exorbitantly expensive to get in the office. But it's just an injectable drug, and with prior authorization from your doctor, you can get it for just the prescription cost and administer it yourself. In my case, the Lupron Depot 3-month costs $30. Injected by a nurse, one provider charged me $790 a visit, and another over $3,000. Work with your doctor, insurer and pharmacy. If David can stick himself with a needle, or he trusts you to do it, he can save a bunch of money.

Look up and look ahead. Your best days await you.
Posted 4/7/2020 7:27 PM (GMT 0)
We were finally able to connect with the RO via phone this morning.
Based on the latest biopsy results and MRI findings, he is recommending 22 rounds of EBRT with SpaceOar, a brachy boost, and 18-24 months of ADT. He will stop the casodex and switch to lupron. He would have the script sent here and our local uro can administer. The ADT would start immediately with the radiation starting sometime around September.

Given that the surgeon will definitely have to take both nerve bundles, Davidnis leaning more towards the radiation option.
Posted 4/7/2020 8:31 PM (GMT 0)
That is an excellent treatment method. It has worked very well for me and many others on the forum. We have achieved complete cancer control with limited to no negative treatment side effects, and we have our nerves. The combination radiation treatment in intermediate and high risk situations shows that surgery is in no way necessary, and very often is an inferior treatment method when combing the level of cancer control and treatment side effects. You will do very well with this method.
Posted 4/7/2020 11:16 PM (GMT 0)
Similar to JNF, I've also had that same combination treatment and I've also done very well. That said, at UCLA where I was treated, as a G7 I know they would typically do brachytherapy without the external beam radiation. Is the fact that the RO is recommending the combo treatment due to concerns about spread? It was unclear to me from your initial post, how much of a concern that was.
Posted 4/7/2020 11:27 PM (GMT 0)
Best of luck, Star!!

Djin
Posted 4/8/2020 4:22 PM (GMT 0)

Michael_T said...
Similar to JNF, I've also had that same combination treatment and I've also done very well. That said, at UCLA where I was treated, as a G7 I know they would typically do brachytherapy without the external beam radiation. Is the fact that the RO is recommending the combo treatment due to concerns about spread? It was unclear to me from your initial post, how much of a concern that was.

His MRI shows ECE/EPE on both sides and NVI on one side and questionable on the other side. I believe that’s the reason for the EBRT. No seminal vehicle or bladder neck invasion though.
Posted 4/8/2020 5:37 PM (GMT 0)
Two things from an earlier comment tha I just e-read.

First, he isn’t disabled and he can not just choose to be on disability whether salaried or not. You don’t “just sign up”. Doesn’t matter on his intentions, he is actively working and no doctor will sign off on a disability due to his present state. It easy to read your employee benefits handbook to see the definition of the disability. If he met the definition of disability, he would not be at work presently.

Secondly, I would seriously question a non-professional administering their own Lupron shots, or having a non-professional family member or friend do it. I find that advice alarming. Well trained nurses and doctors administer these shots. This isn’t the same as a self administered insulin shot or a poke of Neulasta that is specifically designed to be self administered. Stick with your doctor and get the first shot administered. Be safe, above all. And as for a three month Lupron depot costing $30.00 at your pharmacy, I seriously doubt that. But call them up and see. Or call the pharmacy the other poster referenced. When you look at all the pharmacy providers on line you will see the depot kit is more like $1,750. Also you can call the manufacturer directly for possible assistance, but with insurance that covers the drug and professional administration, such assistance is doubtful.

Regarding COBRA, in the event he loses his job, it continues the exact same health insurance coverage you have now, just at a higher cost, for up to 18 months. I hope you are prepared financially for a job loss and also hope he has started a job search outside his company. These are troubling times in general, and more so for some people in situations like this.

The approach of starting the ADT and then have the radiation therapy is a very sound, effective and proven method. Get it started. The treatment cost to you throughout will not change with a job loss since your coverage will be seamless. Premium costs will go up, but you have the legal assurance of future coverage the same as you have now.

Best wishes.
Posted 4/8/2020 9:34 PM (GMT 0)

JNF said...
Two things from an earlier comment tha I just e-read.

First, he isn’t disabled and he can not just choose to be on disability whether salaried or not. You don’t “just sign up”. Doesn’t matter on his intentions, he is actively working and no doctor will sign off on a disability due to his present state. It easy to read your employee benefits handbook to see the definition of the disability. If he met the definition of disability, he would not be at work presently.

Secondly, I would seriously question a non-professional administering their own Lupron shots, or having a non-professional family member or friend do it. I find that advice alarming. Well trained nurses and doctors administer these shots. This isn’t the same as a self administered insulin shot or a poke of Neulasta that is specifically designed to be self administered. Stick with your doctor and get the first shot administered. Be safe, above all. And as for a three month Lupron depot costing $30.00 at your pharmacy, I seriously doubt that. But call them up and see. Or call the pharmacy the other poster referenced. When you look at all the pharmacy providers on line you will see the depot kit is more like $1,750. Also you can call the manufacturer directly for possible assistance, but with insurance that covers the drug and professional administration, such assistance is doubtful.

Regarding COBRA, in the event he loses his job, it continues the exact same health insurance coverage you have now, just at a higher cost, for up to 18 months. I hope you are prepared financially for a job loss and also hope he has started a job search outside his company. These are troubling times in general, and more so for some people in situations like this.

The approach of starting the ADT and then have the radiation therapy is a very sound, effective and proven method. Get it started. The treatment cost to you throughout will not change with a job loss since your coverage will be seamless. Premium costs will go up, but you have the legal assurance of future coverage the same as you have now.

Best wishes.

Our local urologist will administer the injections. We have a previously scheduled appointment with him on Monday and as of now, they are still seeing patients. We are waiting on a call as i type this from the RO’s PA to discuss that process. What makes this interesting is his treatment at MDA is covered 100%. There are no out of pocket costs to us. I do not know if the Lupron would fall under that under normal circumstances. Is it considered a regular prescription or is it considered treatment? We can’t go to MDA right now. They are not scheduling appointments.Not to mention there are checkpoints set up between Louisiana and Texas with Texas imposing a mandatory 14 day quarantine for travelers from Louisiana. (Now how they actually enforce and monitor that is a different discussion).

As for his work...that is also a conversation for a different day. There are a lot of things up in the air. I’m very familiar with Cobra/state continuation. I can add him to my insurance for a lesser premium than his policy but we looked at the numbers and with the program he’s on with MDA with no co-pays, deductibles, or any out of pocket cost, it will make more sense to keep his policy for the duration of his treatment at MDA. Thankfully we are well situated financially and he will receive a decent severance package (from what we’re hearing). We definitely need this virus crap to go away and soon though! It has majorly impacted my business. But I’m pretty confident we will financially weather this ok.

Post Edited (star0210) : 4/8/2020 4:01:57 PM (GMT-6)

Posted 4/8/2020 9:51 PM (GMT 0)
I have a question.
In normal times -as in “non world is falling apart covid-19 crisis” what would be the normal timeline of my husbands treatment? Is there a “standard” amount of time they want you on the Lupron before starting radiation?
Posted 4/8/2020 10:03 PM (GMT 0)
Comments from snoobdat just a few items previously on 3/26/2020.
Posted 4/8/2020 10:06 PM (GMT 0)
Typically, ADT is about two months prior to starting radiation. I'm not aware of any downside in being on ADT longer before you start--it should keep any PCa on hold until you begin radiation. And your husband should get blood tests during this time to ensure his testosterone is <20 and that his PSA has dropped.

FYI, there was an earlier post suggesting you do the Lupron shots on your own to save money, but it's good to see that you have everything covered in terms of treatment, as well as have a plan for insurance.
Posted 4/8/2020 10:09 PM (GMT 0)
Star, that sound great. Yes, he will choose either his COBRA or to go on your plan. HIPPA defines a job loss as a “life changing event” and opens a new enrollment period.

ADT shots are a treatment, not a drug prescription. They will normally be subject to deductible and co-pay as most any other clinical treatment would be. Your employer sponsored plan can clarify that, just call or email them. It is all detailed in your plan by law and you have complete access to the coverage information.
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