Worried daughter comes back in hope again

[Ayra1]

My dad was diagnosed as Gleason 8 prostatic ca with RRP in 2014. With margins clear and one periprostatic lymph node positive. He was asked to be kept on wait n watch. His psa post surgery was .08. It remained till .2 for two years when he was advised Sbrt to prostrate bed. His next psa was 2. Mri showed femur met soloitary of .5cm. Given sbrt to met and started on ADT. For almost 3 years his psa was <.008. Now started to rise and was.067. He is a strongMam but as a daughter am not able to think the way he will go in pain. Is his cancer and psa patterns suggestive of a very aggressive disease. We have always read men generally don’t die of prostatic ca. Please a daughter seeking hope.

Can’t thank u all

[Tall_Allen]

Deal with what is before you right now instead of worrying about a future that you make up in your head. I practice mindfulness and highly recommend it.

[Ayra1 in reply to Tall_Allen]

Right. Thank you

[Rocketman1960 in reply to Tall_Allen]

Or said another way "One day at a time"! Breathe.....

[Hidden]

His PSA is still very low and has taken a long time to rise to where it is now. Doctors are unlikely to recommend adding another androgen-based treatment until his PSA gets above 2. That could be quite a while from now.

Best thing to do is take one day at time and forget about the things in the future you can't change. Deal with things as they come along and make the most out the time you have. We all have to learn to do that with this disease. I know from experience how thinking about all the things that might happen down the road negatively impacts your quality of life.

Wishing the best for both of you.

[Hex40 in reply to Hidden]

Words of wisdom. Unfortunately 43 years in IT taught me to plan for the worst and hope for the best. I am trying though.

[Hidden in reply to Hex40]

Thanks.

I remember my first appointment with my oncologist and how I went through every treatment one by one asking her "Then what happens when that doesn't work?" Eventually, she ran out of treatments and said "Then we'll find comfort care for you." I remember thinking "Oh my God I'm going to end up in hospice!" The whole thing got me into tears.

After I left the appointment, I remember thinking to myself "You idiot! Look at what you just did." It was a great lesson for me. I really made a big effort after that.

[Ayra1 in reply to Hex40]

Thank you

[Hidden in reply to Ayra1]

We are with you in this. We are going through the same things. Any time you need support you can come here. We understand.

[Ayra1 in reply to Hidden]

Thanks so much

[j-o-h-n in reply to Hex40]

Words of wisdom. All my years in IT taught me to blame it on the lastest employee who left the company...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/28/2020 6:21 PM EST

[monte1111 in reply to j-o-h-n]

Welcome back. I thought you had kicked us to the curb. We have been blaming you for everything for the last 27 days or so.

[j-o-h-n in reply to monte1111]

Hello and thank you monte1111,

Sorry I was busy taping a new reality show featuring guys who had RPD's.

It's called "Dancing with the Scars" and hosted by Tom Bergegone. Don't miss it...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/30/2020 8:01 PM EST

[monte1111 in reply to j-o-h-n]

You had me at reality. I will keep checking my 440 channels of crap. I wouldn't want to miss it.

[Kaliber in reply to Hidden]

Well said brother. 👍👍👍

[Ayra1 in reply to Hidden]

Thank you

[Ayra1 in reply to Hidden]

Thank you

[AlanMeyer]

Although Gleason 8 is considered to be aggressive disease, it looks like your Dad has had aggressive treatment and has had a pretty good response to it. There are some men who get more than three years out of ADT but there are also many men who get a great deal less. There are also many men on ADT who never see a PSA as low as .008. I'm hopeful that, just as he got a good response to ADT, he'll also have a good response to the follow on treatments, of which there are quite a few with more arriving every year or so.

If possible, your Dad should be seeing a "medical oncologist" (not a urologist or radiation oncologist - though a rad onc may need to be consulted when metastases are identified) with a specialization in prostate cancer. Those are the doctors who are reading up on the latest treatments and the latest clinical trial results. At some point I expect he will be offered abiraterone acetate ("Zytiga" in the U.S.) or enzalutamide ("Xtandi" in the U.S.) - which could provide anywhere from months to a reasonable number of years of low and stable PSA. Then there are treatments like chemotherapy (of a couple of types), radionuclides, immunotherapies, and newer treatments of each of those types and perhaps other types as they become available. There are no guarantees, but there is a decent chance that your Dad will live on for quite a few years with no symptoms of prostate cancer.

Best of luck.

Alan

[Ayra1 in reply to AlanMeyer]

Thank you

[JRPnSD]

Following Prostatectomyin Aug. 2019..Gleason 9..clear margins...one lymph node positive.....PSA .01 after 8 weeks....05 after 3 months. Now trying to figure out next steps. NCCN.org guideline for Prostate Ca indicates I should have done ADT followed by Proton Bean for a 97% survival rate after 5 yrs...versus surgery and a 42% survival rate at 5 yrs. Why don't all doctors make this NCCN.org. info available to patients?

[Ayra1 in reply to JRPnSD]

Our urologists persistently asked for wait n watch. Misfortune there

[JPnSD in reply to Ayra1]

Please check out this guideline:

nccn.org/patients/guideline...

[Break60]

See my profile and you’ll see my journey with high risk PCa. I’m doing well. Hang in there!

[zenbee13]

Hi Ayra,

I was diagnosed in 2009 with a Gleason 9. I had it removed and was clean in the margins much like your Father. In 2010 after my PSA rose to 7 I did 13 weeks Radio salvage, and was good for 2 years. Then in 2012 it rose to about 2, and small involvement in 2 lymph nodes. I've been on Lupron, and then Lupron plus the different androgen blockers since then. It's 2020 and only now will I begin chemo since the same lymph nodes are now sporting some metastatic growth. I haven't begun this yet.

During all those years I had ups and downs emotionally, and what you are hearing from all of these wonderful warrior brothers of mine in this web site is true. It is only when we are not present in the now, that our Monkey brain begins to chatter and hiss all of the most dire consequences possible. Remember that is the brains job; Keep you safe from negative by making it awful. Your heart/spirit can never be that loud, so we have to quiet ourselves to hear the spirit tell us we are fine in this moment, we are strong in this moment, we are love in this moment, and that is what beats all things in life!

Peace and love,

Bees

[Ayra1 in reply to zenbee13]

Thanks. Encouragement

[Hidden in reply to zenbee13]

Beautiful

[j-o-h-n]

How old is your Dad? Make him smile... and laugh together. Treat him like a Maharaja....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/28/2020 6:29 PM EST