Crazy Tragic PCa Story

My first reaction was 'how can this happen?' but then I quickly realize the answer is it really doesn't matter now, and we have to deal with what is. I am posting this now as a cautionary tale and I hope someone who reads it gets some benefit.

Sorry in advance, but this will be a long post.

Tuesday night my wife gets a call from her father's girlfriend (basically his wife, they've been together 30 years) telling her that her Dad (Jack) is in St Vincent's Hospital in Evansville, IN. He is 81 and lives in Minnesota (as do I) and he was traveling by car to their house in Venice, FL for their annual snowbird getaway. He began experiencing excruciating back pain and by the time he pulled into a Rally convenience store his legs had begun to go numb. He went into the store to get help and by the time he got back to his car and sat down, he was completely paralyzed from the chest down.

He was traveling with his 14 year old, deaf dog so when the ambulance came to take him, the police had animal control come and get the poor pup, and they left the car in the Rally parking lot.

Wednesday morning we get some information that he has a lesion on his spine that has compromised his spinal cord, causing the paralysis. Of course my first thought is prostate cancer.

A little 'Divine Intervention' interlude...
My wife and I just happen to have a very old and dear family friend that lives in Evansville. What are the chances he ends up there with all the towns between Minneapolis, MN and Venice, FL? So our friend is able to retrieve the car and the dog Wednesday morning. Thank God.

So I jump on a plane and get down to Evansville and head straight to the hospital. It's 10 PM by now so I am not really able to get any more information other than they had done an MRI and discovered he has lesions on his spine, both sides of his ribs, pelvis, and the lymph nodes in his pelvic region are inflamed. As a result they had begun radiation treatments on the bone mets. I hang out with Jack for a couple hours, talk to the nurses, ask them to clean up his IV port and get him some more pain meds, and then I head to my buddies house which is literally 2.4 miles from the hospital. Just a crazy good coincidence.

Talked to the Oncologist a couple times yesterday and the preliminary results of the biopsy, which was taken from the spine, indicate PCa. He said he is almost 100% sure that is what it is, but we should get final results and his PSA levels today.

So, to make a long story at least a bit shorter, here are some bullet-points I would like advice and/or comments on:

• He went to the urologist 2 years ago with frequent urination problems. The urologist did a DRE, told him he was fine other than an enlarged prostate, and sent him on his merry way. Jack does not remember, and does not think he got a PSA test at that time.
  
• How the hell do you get to be 81 and never have a PSA test??? I know you have to be your own advocate but I can't believe some doctor, at some time, did not test his PSA. This seems insane to me.
  
• I do not know Gleason score or PSA levels yet but with this many mets, it seems his PSA will probably be astronomical. Does anyone know if Gleason even matters at this point, other than for prognosis? Seems to me the treatment would be the same no matter the Gleason score at this point.
  
• The doctor says he has a less than 10% chance of regaining feeling or function in the paralyzed area (mid-chest down). Any thoughts on this? Has anyone heard of a similar story?
  
• With this level of mets, I know there is no chance for a cure, but has anyone heard of a similar story where the cancer was this advanced, and the patient lived for more than a few months or maybe a couple years?
  
• Jack is in relatively good health other than being overweight (5'9, 257 lbs). Normal blood pressure but taking a statin for cholesterol.

Anybody reading this with who is male and over age 50, or has a parent that fits that description...
I know that there is a debate on the efficacy of PSA testing, but it seems to me a good idea to at least get one at age 50 for a baseline, and at least re-check it every so often. My father-in-law should not be in the situation he is in and I think it's just tragic. It did not need to get this far!!!

Peace
- Mic

Mic,

That sucks. It's hard to say about spinal injury--it all depends on what has happened. Spinal mets are one of the worst types of PCa mets. I don't know what the current understanding is, I hate to say it, but I know what happened with my dad in 2004: From diagnosis of spinal mets to the end was less than 3 months--but, he was castrate resistant by that point, and that was before some of the newer drugs like Zytiga were in wide use.

From what I know, and remember from my time living in that part of the country, St. Vincents Evansville has a good reputation. For bigger guns, Evansville isn't far from Nashville and Vanderbilt, or St. Louis and Wash U/Siteman.

My PCa has metastasized into my spine, especially the T12.

I did a 15-session round of radiation.

Before the treatments, I was largely numb in my left leg/foot, so much so that I had to walk looking down to be sure my foot was where I thought I put it. I also had other numbness / total lack of feeling, but not anything near paralysis. At the same time I had very little pain. But I generated a lot of unexplained bruises, because I didn't feel when I ran into things like table corners.

After the treatment, my leg and foot work. But I am often in screaming pain.

The RO and I went over the nerves involved, and what they connect to. I seem to have issues that were hidden by the lack of feeling, or developed during that period. Now they present themselves vividly. This is because the mass of the met was reduced, and took pressure off the spinal cord and the radiating nerves.

So yes, if there was just pressure, rather than actual nerve damage, feeling may come back. But I've exchanged no feeling for dreading every step, and having to figure out strategy for things as simple as leaning over to put something in the oven.

Back to your thought about the DRE, we all have to remember that a DRE only checks one side. No PSA test? Yes, I was there. As I've told in the past, my first PSA test was at 57. For whatever reason, the docs didn't do them (perhaps records were lost in an ugly practice battle), and I didn't know to ask. It cost me dearly.

Since he's never been on ADT, even with PCa as advanced as that there's a very good chance that it will quickly shrink all the tumors. Logically, to me that means there's a chance that could reverse the paralysis, but I'm no doctor. I'd be curious if the oncologist has seen that situation before...it can't be at all common.

Overall, I'm glad that you had the ability to get out there. Wishing everyone well and that ADT and the spot radiation helps him get control over the situation.

Thanks all! Just heard today that he is already getting some feeling back in his legs after 3 radiation treatments. I think that is a hopeful sign!

GM, horrible story, glad it seems to be going in the right direction. I don’t see why ADT couldn’t work for many years. Hope so.

One of the things that really worries me about national one-payer medicine so strongly advocated by many is that "experts" will decide everything about who gets what tests, treatments, etc.. Some "experts" have decided that doing screening PSA tests is not indicated. Too expensive you know. If and when we do have such a system I sure hope they are really careful about refusing to do screening tests like PSA, Pap smears, etc.. Otherwise we'll see many cases like this.

GeetarMan said...

* His PSA is 300 which doesn't seem too terrible considering how widespread his mets are. I've heard others on this blog with PSAs in the thousands.
* After the preliminary drugs and treatments (eg. Casodex, Prednisone, Calcium, Vit D, etc.) they are recommending Zytiga which they say is 'very expensive'. Anyone have experience with that?

My PSA has never been over 8 (yes, a single digit) for a G4+5. The value of PSA is how it changes more than what it is.

Zytiga, if you don't have great insurance, can be $9,000 a month. I was lucky that while it worked for me, I was still working, and it was completely covered after a huge deductible.

I was on Zytiga with good PSA results for a few months, then it caused liver failure-level blood test numbers. We changed to Xtandi.

Post Edited (142) : 1/4/2019 9:25:26 PM (GMT-7)

Hopefully the radiation and drugs will help him be more comfortable. That he didn’t have PSA tests is understandable as many if not most doctors have bought into some of the guidelines that they should be stopped after age 75.

300 is an extremely high PSA and indicates a very lot of cancer as ther extent and effect of the Mets indicate. It is not useful to compare his PSA to others as the comparison is meaningless. With each generation the PCa cells mutate further away from their source and usually become more aggressive and express less PSA based on their volume.

The important thing now is that he have proper palliative treatment to bring relief from the PCa. As to the cost of drugs and his insurance, I assume he is on Medicare and has proper drug coverage. Most of what he is doing will be covered by Medicare A and B and his supplement plan, so he should have little out of pocket expense. If he uses an Advantage plan instead of traditional Medicare, then he will have the deductibles and copays to meet. Zytiga is self administered and will be covered by his drug plan. There he will have deductibles, the donut hole and then catastrophic coverage and can be a bit expensive.

Best wishes to him for relief and getting back to a more normal life he appears to have been enjoying.

My father-in-law passed away in the early morning hours today. 19 days after being diagnosed. Very sad. Can't help but feel like someone somewhere dropped the ball.

GeetarMan I agree and it should be a crime. It is extremely sad that a man in his early 80's who was regularly getting physicals was not being provided a PSA test or even given the chance to discuss getting one. I too, as many others did not receive PSA testing until the recommendation on screening was changed in 2012. I hadn’t received the PSA screening since 2012, even with a high PSA that year and a family history of PC. I did have annual prostate digital exams, my doctors hadn’t detected any abnormalities.Yet the PSA is the best way to tell if there is a problem and cheap. The U.S. Preventive Services Task Force, an independent panel of experts, recommended that doctors stop ordering the PSA test in 2011. This volunteer group of national experts in prevention and evidence-based medicine found that routine prostate-specific antigen testing was causing too many patients to receive unnecessary prostate biopsies and treatment. By 2017, with fewer men being detected with early-stage prostate cancer and with the rise in advance prostate cancer incidences, the task force determined that men ages 55 to 69 should make an individual decision about the PSA screening with their clinician, but men over 70 should not be tested. However, the recommendation to exclude older men from the PSA screening was not universally accepted. “There is increasing evidence that this age-based approach is significantly flawed,” said Patrick Walsh, an internationally renowned professor of urology at Johns Hopkins School of Medicine, who co-authored a recent study on high-risk prostate cancer in older men. According to the John Hopkins investigators, men age 75 and older account for 48 percent of metastatic cancers and 53 percent of the deaths from prostate cancer. Without PSA testing, cancer can go undetected, limiting treatment options. My father, who is 94, was successfully treated for prostate cancer at age 78 prior to the recommendation. I believe it is time for a class action suit. The U.S. Preventive Services Task Force and individual physicians need to take responsibility for their actions.

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69 yrs., marathon runner, 44 3D-CRT/IMRT Radiation delivered via 3D-CRT in 1.8 Gy minimum dose fractions to a total of 79.2 Gy., 10.5.18. PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 94 yrs.

Post Edited (SantaZia) : 1/20/2019 3:29:47 PM (GMT-7)

I'm so sorry for your loss. This is such a tragic story.

Geetarman,
I was not expecting to read that news. I’m sure you and your family are in shock. I’m sorry things turned out as they have.

My best to you and family.