Dad has Stage 4 Prostate Cancer; rising PSA levels?

[bern5]

Hi everyone,

I (25m) didn't realize how active this community was until recently! I was wondering if some people can help clear the air with what I'm seeing in my Dad (64).

Last August (2019) my Dad was diagnosed with Stage 4 prostate cancer with bone metastases and a PSA level of 433 (Gleason score: 9). In early September 2019 he went on Leuprorelin and started taking Apalutamide daily. An appointment in October 2019 revealed the therapy was working and that my Dad's PSA levels dropped from 433 => 44! Great! His PSA levels every month following October were lower than the previous, which gave him and the family a lot of hope. Because my Dad's continued to decrease after each visit, his doctors thought it was be best to checkin with him every 2 months (starting after his March 2020 appointment). The lowest we saw his PSA levels was .14 (compared to his original 433).

Well, come May 2020, my Dad's PSA levels went up from .14 to .33. Alright. Not so bad, I think? I chalked it up to a PSA bounce as rarely do men with advanced prostate cancer stay at a PSA level of 0, or close to it. The doctor wasn't at all alarmed and just suggested more waiting. My Dad got an MRI scan earlier this month (August) to compare what his body looked like before the hormone therapy - apparently my Dad is doing 'remarkably' well in the sense that the cancer is shrinking/not growing and the bones are starting to repair themselves! This was great news, but we just found out today that his PSA level went up from .33 (in March) to 1.8 just today (the appointment was done over a phone call)... he's absolutely devastated, as he thinks his cancer is already resisting the treatment.

I understand not everyone here are medical professionals, but based on those who may have personally experienced or witnessed this PSA growth before, is it bad? I assumed it would give him 2 - 3 years of peace before we switch treatment plans, but I'm worried that window might be closing (if it hasn't already). His next appointment is late October, but I can't stop thinking about what that would look like for my Dad.

I also understand that it isn't necessarily the end of the world, as chemo/radiation are still options, but I'm wondering if the aforementioned spikes in my Dad's PSA is indicative of his cancer being/becoming castration-resistant? Or is this just his cancer rising a bit before it stabilizes again?

My Dad's doctor says there's no need for alarm, but I can't help but worry. I'm also confused about my Dad's MRI results and his rising PSA levels; if his MRI scan was super positive, why is his PSA level going up?

I appreciate any and all help!

[LearnAll]

Dear Caring son Bern5,

First of all a most basic fact: Prostate cancer do not grow very fast and takes months or even years before causing serious harm. Secondly, there are multiple treatments so if one does not work, others can be used.

Third, one increased PSA reading is not enough to reach a conclusion ..it has to be a TREND of PSA rise...and also you need to rule out prostate infection /inflammation as cause.

Fourth, PSA alone does not tell the whole story...you have to take a composite view by checking other biomarkers such as Alk Phosphatase, Hb%, Albumin, Lymphocyte count and of course scans to arrive at a solid conclusion.

A re-check of PSA is required and a few readings are needed to figure out a trend. As the stock market guys say "trend is your friend" Just up down up is not enough.

Ask your Dad to chill...I admire sons and daughters like you who love and care about their parents. Lets Hope for the best......All the best to you.

[bern5 in reply to LearnAll]

I appreciate you breaking it down for me. When I get in my head about my Dad and his prognosis, I really get worried and start to doubt everything and overthink (it's mentally exhausting...), so thank you for your comment!

My Dad does need to relax, but he's also just as bad as me when it comes to overthinking. Do you (or anyone reading this response) have any suggestions to calm someone who is imagining the worst for themselves? He got really emotional after hearing his PSA go from .33 to 1.8, so I'm a bit lost with how to handle someone (let alone my father) who struggles accepting his diagnosis...

[LearnAll in reply to bern5]

Its a normal emotional reaction to loss of any kind. Loss of health is serious loss and we go thru a grief reaction which has steps like...Denial ("it can not be tru") then, Anger ("why this is happening to me..its so unfair") followed by third step ..bargaining (" What can I do to mitigate some of the harm coming to me by this tragic situation") and forth and final stage ..acceptance (" It is what it is..I still have to live my life with this") People go back and forth from one stage to another but eventually reach to Acceptance stage.

Anxiety is a reaction to any threat to our existense...its very uncomfortable state of mind. Sometimes, Grief can turn into clinical depression..and that time, we need some mild antidepressant med like Sertraline (zoloft) or Psychotherapy. Diagnosis of cancer is very stressful for a man and his loved ones. My lovely 23 year old son went thru this anxiety when I was diagnosed 18 months ago. Now things are back to normal. We have accepted this change in our life. I can understand well what you are feeling.

[bern5 in reply to LearnAll]

How did your son manage his anxiety? Or did it eventually subside? I forget to look after myself sometimes, so any advice (new or old) are always appreciated (if you have any - no pressure!)

[LearnAll in reply to bern5]

First 6 months after diagnosis were hard for my son. He, a fine young man .felt scared that I will be dead soon as the name 'cancer" provokes a lot of fear in peoples minds. It was a relief for him to know that its a different kind of cancer and people survive many years after getting diagnosis. He also saw me working full time and doing my 4 to 5 miles daily walk. So the initial shock and fear in our family subsided in about 6 months. Time certainly heals us . Parents want to see their children happy and doing well, therefore you have to take care of yourself . Try to restore normal atmosphere at home if possible. I know it is scary but with maturity and wisdom , we can learn to live with tragic situations. What other choice do we have. ? Tell yourself "accept" and "adapt" Wish you strength and peace of mind.

[Hidden in reply to bern5]

He got really emotional after hearing his PSA go from .33 to 1.8, so I'm a bit lost with how to handle someone (let alone my father) who struggles accepting his diagnosis...

That's why we call it Prostate Specific Anxiety. There's a lot going on with a new diagnosis of Stage 4 prostate cancer.

It's easy for people to say "just calm down" but we sometimes need help with all of this. It can really be overwhelming for the patient. I had a therapist for a while and it really helped me a lot. I can recommend that. We can't always do this alone.

[bern5 in reply to Hidden]

He's unfortunately against therapy (I feel like this is a common trend/opinion among men in general), but... I think he's growing on the idea? I think this thread will show him how beneficial it is to not only talk about his fears and anxiety, but also to do so with a stranger. Maybe he'll be open to group therapy with other men similar to him. We'll see. I'll definitely talk about Prostate Specific Anxiety with him as that's all he's thinking about lately.

[Hidden in reply to bern5]

I have to compliment my amazing doctor for this. I was in his office discussing how I was really having a lot of anxiety every time my blood tests come around. And he said, "We have someone on staff now that can help you with that." I basically said, "OK sounds good".

I went over to get my shot and Zometa infusion and while I was there, a therapist comes over, introduces himself and I have my first appointment before I even leave.

It was really helpful to just have someone to talk to. He also taught me how to do some breathing exercises and meditation for anxiety during our appointments. It was very helpful. He wasn't there to analyze me, just listen and help me get through it.

[bern5 in reply to Hidden]

This is great feedback. I deeply appreciate you talking about your experiences with therapy; I'm sure it will provide further evidence for my Dad that therapy works for a lot of people and can be very beneficial in the long run Thanks!!

[Hillwalker87 in reply to bern5]

My dads the same and it bugs me 😂

[Hidden]

His PSA is still very low so I think he just has to keep an eye on it right now, maybe monthly for a while. What is his Alkaline Phosphatase level? Is it stable or is it rising too?

He may want to have imaging done again at some point if his PSA continues to rise. You don't make treatment changes based on PSA alone, it's just one indication. My doctor always reminds me: we are treating the cancer, not the PSA.

Having genetic sequencing done may provide an opportunity for a targeted treatment if he has a DNA repair defect such as BRCA1, BRCA2, or ATM.

Docetaxel chemotherapy is a good option if he needs to change treatments down the road. Right now I would just keep an eye on things and discuss these things with his doctor.

[bern5 in reply to Hidden]

"We are treating cancer, not the PSA" is a good way of thinking about things. I appreciate you reminding me that PSA levels aren't the only indicators and that treatment changes shouldn't be made on PSA alone. Thanks!!

[Tall_Allen]

Don't pull the plug on any treatment until a scan tells you the metastases are progressing. PSA is only one biomarker. Look also at his LDH and his bone alkaline phosphatase, but mostly go by the scans. When apalutamide stops working, docetaxel would be a good idea. If there is bone pain, Xofigo (and Provenge).

[bern5 in reply to Tall_Allen]

This really helps, thank you!! "PSA is only one biomarker" put things into perspective, as I tend to focus a lot on PSA as the primary indicator of cancer progression during hormone therapy. Everyone is different, so every 'story' is unique in a sense.

I just get exhausted with all the overthinking I do haha.

[Hidden]

Two words..... Docetaxel soon.

[bern5 in reply to Hidden]

I keep seeing this medication being thrown around here and on other sites. I'll have to do some investigating!

[j-o-h-n]

Take a chill pill..... Okay next.......... give us more info regarding your Dad. Location? Treatment center(s)? doctor's name(s)? All info is voluntary but it helps us help him and helps us too.

Thank You!!! You're a good egg there bern5......Keep posting here.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/25/2020 10:38 PM DST

[bern5 in reply to j-o-h-n]

Haha, I will try! These comments really helped me give some much needed piece of mind, as I tend to think the worst after doing a bunch of research.

We currently live in Canada. My Dad is visiting CancerCare Manitoba; however, I'm not sure who exactly is helping him, but I've met him in person (I'll ask my Mom about that one, since his name escapes me).

[j-o-h-n in reply to bern5]

Hello again bern5.... thanks for your quick reply.... when you get all of that bio info on your Dad just add it to his Home Page for your use and for members to view. Give my best regards to your Dad and always remember that God is on his/your side. As far as you guys being Canadian we would hold that against you. Keep smiling...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/26/2020 1:07 PM DST

[bern5 in reply to j-o-h-n]

I'll update what I can and maybe introduce him to this website/community. He really needs someone, be it professional or a group of similar men, to navigate through his anxiety.

I will definitely tell my Dad about you and the other who have posted here I don't he realizes how much support is out there for him.

[2dee]

Ask if it is time yet to consider adding Xtandi or Zytiga in the future IF his PSA doubling time gets short enough?

2Dee

[bern5 in reply to 2dee]

I'll keep this in mind/ask this question when his next appointment comes up, thank you!!

[Magnus1964]

2Dee has good avice. Consider zytiga next.

[dadzone43]

MRI is a good test but has limitations. It cannot see small areas of tumor or isolated PCa cells that may be floating around. Best test we have but far perfect. It is a hard thing to fathom but it is true: PCa is not an emergency and there is time to observe and to plan along with a competent oncologist.

[Rocketman1960]

Hi Bern5. Thank you for being a dutifully son. I have two. It’s a good thing! Question. Does your dad still have his prostate? What lead him to get checked?

[bern5 in reply to Rocketman1960]

Yes, he still has his prostate! He got checked last August after urinating blood. Before August 2019, he mentioned he had troubles urinating (I think this was brought up in the spring of the same year). His GP checked and found nothing, so he gave my dad antibiotics. The medication helped him urinate better, which lead us to believe it wasn't serious; however, come the following August, things weren't as simple as we imagined, unfortunately.

[bern5]

Hi everyone,

I'm genuinely surprised with the responses my question(s) got!! Your comments gave me some much needed piece of mind, as my head tends to go to the worst possible scenario. I will check regularly for any question you guys ask so that I can make the most of this community!

Thanks for helping a stranger out on the internet!!