Are we doing enough?

[Mish80]

It has been a while since I last posted. Life since dad’s March stage 4 diagnosis has carried on albeit with the elephant in the room. Brief history: Gleason 7 T2 in 2010, da vinci prostatectomy, then no further treatment. A slow rise (ignored by the urologist) saw psa get to 1.4 and a pmsa pet scan identifying a spinal met. Treatment has been radiation to the met and three monthly injection of Zoladex. His psa has got down to 0.1 and stayed there. Next psa test next month.

My question is - are we doing enough treatment wise? I feel like we are just waiting for this damn thing to spread. Also - when should he have another pmsa pet scan? Or MRI to see If the Met has shrunk ? Are we doing enough ? I hate this.

[LearnAll]

Mish80, Elephant in the room is our own FEAR, logical step will be to get this spinal met properly examined...is it a bunch of live cancer cells or it is just some left over scar tissue due to dead cancer cells ? To be clarified from Oncologist

With PSA 0.1, the possibility of live cancer cells goes down. Need to monitor PSA preferably once a month.

[Mish80 in reply to LearnAll]

Via a biopsy of the met ?

[LearnAll in reply to Mish80]

I will not go for biopsy if there are no symptoms. Just monitor the biomarkers.. i.e PSA, ALP,CRP and LDH every 1 to 2 months.

[GP24]

Zoladex should stop the tumor to grow, so I would not expect new mets while Zoladex works. This can be a very long period because the prostate has been removed. E.g. five to ten years.

I currently see no need for additional treatment. You may want to look into mitigating the side effects of Zoladex. E.g. estradiol patches against bone loss and hot flushes.

[Mish80 in reply to GP24]

Thank you for that. That time period sounds great for this first line of treatment. I assumed it was 2-3 years until hormone resistance ?

[GP24 in reply to Mish80]

Two to three years is a very general estimate. The duration depends mainly on whether the ADT is used as a primary therapy or in a recurrence situation, the Gleason score and the testosterone level. Since in your case there was prostate surgery and radiation plus radiation to the met, i.e. a recurrence, the Gleason score is 7 and I hope the testosterone level is below 0.2 ng/ml, the ADT will work for more than three years, my estimate was five to ten years.

If you do not check the testosterone level, you are not doing enough.

[j-o-h-n]

We all hate this mish mosh we're going through, so you're in good company. Would you please tell us where your Dad is being treated and the doctor's name(s). All info is voluntary but it helps us help him and helps us too. Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/25/2019 5:50 PM EST

[Mish80 in reply to j-o-h-n]

In regional NSW in Australia, I doubt his oncologist would be known on the site.

[j-o-h-n in reply to Mish80]

Thanks for the response.... Hey, you never know if someone here on this site is using your doctor, or that someone may want to use him and ask you about him.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/28/2019 4:12 PM EST

[Mish80 in reply to j-o-h-n]

This is true

[Tall_Allen]

I think you can be assured by the drop in PSA after spinal radiation and Zoladex that there is good local control and reasonably good systemic control . I think this would be a good time to add Zytiga or Taxotere, both of which increase survival more with early use, while he is still hormone sensitive. There is no need for any further imaging until PSA shows progression after one of those therapies. At that time, there will be an array of systemic therapies to choose from.

[Mish80 in reply to Tall_Allen]

Thanks TA. He also had radiation to his prostate bed. He sees his oncologist next month so I will enquire about adding Zytiga. Dad would be very against chemo

[Tall_Allen in reply to Mish80]

It is tragic that so many men have an irrational fear of early use of chemo. Then they wait until it is too late to do much use and is sure to generate more side effects.

[bellyhappy58 in reply to Mish80]

I had just been thru my 6th infusion ( last infusion) on deocetaxel. Was a little apprehensive initially. It was not as bad as many have said. Do seek second opnion and do read some of the work done like Stampede,etc....Tall Allen is a huge help. God bless

[larry_dammit]

You never know with this monster if your doing the right thing or not . I hope you are working with a oncologist now. Good luck we will be 🙏🙏🙏 for you and dad. Fight that monster, never give up

[Mish80 in reply to larry_dammit]

Thank you, yes an oncologist who he sees in a few weeks. Will find out his latest psa this week.

[dadzone43]

The Wait is the worst part. Important to remember that OVERtreating is also harmful. Vigilance is great. HYPERvigilance will wear you all down.

[Mish80 in reply to dadzone43]

Very true. He has psa readings every three months. And he lives rural so has to travel for that. I don’t want him to live the rest of his life in a drs office.

[VictoryPC]

Don't do too much if any Lupron and look into PCSPES and intermittent therapy with Bicalutimide and Finesteride.

[Mish80 in reply to VictoryPC]

Is Lupron different to Zoladex ?

[Mish80]

Thanks for replying everyone. He had an appointment with his radiologist this week just to touch base I guess as no more radiation is planned at present. Dad is not a details man but asked lots of questions including time to live I think it was a reality check for him. I know he’s scared.

[Mish80]

Good advice. Unfortunately monthly readings would mean a lot more travel for dad who lives regionally. It’s important to factor in lifestyle ?

[tom67inMA in reply to Mish80]

Since July I've only been getting tested every 3 months, and my cancer is widely metastasized. It does feel a bit like living dangerously, but on the other hand it does greatly cut down on the stress of waiting for the test results. And the stress of wondering if my treatment is going to change, or if I'll need more tests, etc.

This isn't to say this is the correct answer, but it's what my oncologist is doing, and it does allow me to live my life three months at a time instead of one month at a time.

To answer your original post, no matter treatment is done it will never feel like enough. It's the nature of psychological response to the disease. I've found it helps to pick a goal, and use the ability to achieve that goal as a yardstick for how well treatment is working, how I'm tolerating the side effects, and whether a change should be considered. My previous goal was to run a half marathon. My current profile picture was taken a few feet short of the finish line :-). Next goal is to run a full marathon in 2020.