7 months in...

[Tub111]

Hello all. New to posting but been actively reading through site for a while.

My husband -61- was diagnosed January 11/18 with Stage 4 PCa, progress in 2 pelvic lymph nodes and metastasis to rib and hip. Extremely aggressive and advanced. Timeline..less than a year....PSA was 34 but with growth of prostate an emergency TURP was performed to be able to pee. PSA jumped to 50 thereafter. MO did not sugar coat anything but gave some optimism that 18 months could be realistic depending on how body took treatment.

Started with double dose of Firmagon. PSA test week and a half after dropped to 10.9. Started Zytiga with 5mg Prednisone. Three weeks later PSA 1.9. Started Lupron Depot (3 month) and have completed 2 so far. PSA dropped to 1.2 but slight bounce up to 1.9 last month.

Worst part so far was problems after surgery with incontinence kidney stones and possibility of cancer spread to bladder and kidney but last weeks ultrasound came back negative with excellent kidney function. Last weeks CT scan shows decrease in lymph nodes but inconclusive on mets to bones with “multiple sites”

We, like all of you here, completely shocked, scared and overwhelmed. Decided that we were going to fight the fight and do whatever is on our bucket list.

Hubby feels all the side effects like unbearable hot flashes and tiredness but looks like that is to be expected.

He currently has been Bathtub racing (small high speed boats) through summer and was featured in our local paper with his story of fighting PCa as well as high level hockey 2 times a week and works 6 days a week as we are self employed.

We look forward to many more months/years together while treatment seems to be working.

Sorry for long post but glad to have found this site.

Keep fighting the fight!

Sheri

[Don1157]

Thank you for sharing. Positive thoughts your way!

[Tub111 in reply to Don1157]

Thank you Don1157. Same to you!

[Dalph87]

Please don't accept 18 months as we're all different and even some with aggressive disease managed to survive for several years.

There's a lot of treatment he can take to control it and more will come in future.

Best wishes to you and your husband.

By the way, is he a Gleason 10?

[Tub111 in reply to Dalph87]

Dalph87 believe me we did not “accept “ the timeline but are being realistic in that not everyone will have the same response to treatment. In saying that we will do what is necessary to give him quality of time/life. The decisions will be his not mine.

I pray every day for many more and love every minute we spend together now as we all never know when it could be our last.

We appreciate your response and well wishes your way.

PS: never have been told of Gleason score. Maybe they don’t do so here in Vancouver?

[Dalph87 in reply to Tub111]

Sorry for the late response.

They have to state it, the Gleason score is the grade of aggressivity of the cancer, it should be stated in his biopsy report.

Gleason score can range between 6-10, score 6 cancers are usually not aggressive and have minimal chance to spread, score 7 cancers are moderately aggressive and have moderate chance to spread, while score 8-10 cancers are very aggressive and can easily and quickly spread.

My father for example has a 7 and it did spread to his lymph nodes but not yet to his bones, he was diagnosed 18 months ago.

Best wishes to you and your husband, I'm sure he still has many years.

[Tub111 in reply to Dalph87]

Thanks Dalph87.

No biopsy performed so no gleason score. All this diagnosis came from first initial test at urologist. Prostate so large he could not pee or do number 2.

Sadly we are now back to not able to pee so lioks like cancer has already returned. Sadly it has been this way with 5 other past family members with their types of cancer.

Hopeful and holding strong and never giving up hope or the fight!