Should I be seeking extra treatment?

Posted by Brettiquette @brettiquette, Jul 22 4:36pm

Hey guys and wives, this is my first post here but have been lurking a couple months. I have a pretty good heath plan at Kaiser in Southern California. I got my first PSA test last June at 56 years old with a result of 138. Immediate bone and CT scans were negative. Subsequent PET scan indicated no spread. Biopsy in July resulted in Gleason 9 (4+5) and PNI. started casodex and PSA had declined to 80 before RARP in late September. Pathology indicated 1 of 10 lymph nodes positive, seminal vestical and bladder neck invasions. No mention of cribriform. PSA of 9.4 six weeks after surgery. Had another PET scan mid December and lit up a bit in soft tissue near sacrum and rectum. Started Lupron (24 months) and SBRT in January on a TrueBeam (35 sessions). PSA in April was .3 and latest June results are < .1. I have an appointment tomorrow with urologist and have some topics to discuss including sexual health since I have severe ED. Bone and heart health. Pelvic pain issues. Also interested in more treatments I’ve read about here like adding a second ADT drug like Erleada, Estradiol or Eligard? Anticipating some reluctance since PSA is “undetectable”. Any thoughts on questions or treatments I should ask about? I’m very active and in pretty good shape, doing some weight training and coming out of the initial Lupron aches and pains that wrecked me after second 3 month dose. I’ve switched to a one mont dose and getting another tomorrow as well. Still have a bit of pain near rectum and in genitals, mostly in testicles, is that normal? Thanks for reading this far, if you have any tips or suggestions for questions to ask it is appreciated.
Brett

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for jeff Marchi @jeffmarc

I was in Vancouver and Victoria 60 years ago. Beautiful place, surprised to see Indian totem poles while driving through the countryside.

We went to the Seattle world fair and then western Canada.

Jump to this post

60 years ago ? you over due now to come up ! Oh ya , lots of Indian stuff especially if you go into the interior .Vancouver has changed and gotten huge ! Very desirable place for massive foreigner influx . Tons of China people . Airport is right there and China is unlovable on a good day ....so they end up in the Vancouver core . Very high density there . Mostly the rich out of China ( government people ) as the poor get no travel documents. But yes ... I used to live on the mainland ( where Vancouver is ) Now the last 6 years on Vancouver Island . 1.2 hour Ferry away from the big city !

REPLY
Profile picture for VancouverIslandHiker @vancouverislandhiker

Thanks , I will look into this . My PSA is 0.06 - 0.033 . It sort of hovered in there for 2.5 years as that is when I had Salvage . Dr thinks I have some healthy cells that pushes out micro amounts of normal PSA . He "thinks" this is the case . He is head of Urology for the Province of BC ....so his guess is like my research ! HA!!! I dont think I will need ADT for a long time , if at all I hope - God Willing- and by that time maybe things and drugs have changed ? I trust yoru doing well Jeff ? BTW ...love your state . California is such a beautiful state . I really like the north part .

Jump to this post

You don’t need to do anything, You are definitely in a good position.

You could go decades without any issues. The cancer seems to go dormant in a lot of people, They are working on a drug to go after those Dormant cells, and a lot more. Protac arv-766 is a new drug they are testing to do that. This could make a big difference.

I live in northern CA.

REPLY

Post visit summary is doctor very happy with progress so far, no med changes. No exploratory imaging until PSA rise. Getting the gene test, I have two sons. Did recommend a consult with City Of Hope to review all treatment so far. Said my PCa doesn’t quite fit into Kaisers neat little box.
Other than the groin pain I guess I’m good.
Thanks to all that contribute here.

REPLY
Profile picture for Brettiquette @brettiquette

Post visit summary is doctor very happy with progress so far, no med changes. No exploratory imaging until PSA rise. Getting the gene test, I have two sons. Did recommend a consult with City Of Hope to review all treatment so far. Said my PCa doesn’t quite fit into Kaisers neat little box.
Other than the groin pain I guess I’m good.
Thanks to all that contribute here.

Jump to this post

I am a Kaiser patient in Northern California. I can’t understand, From what you describe, How Kaiser says your cancer doesn’t fit into Kaiser’s neat little box. I don’t see anything about your cancer that is unusual. I don’t see anything they have done in your treatment that is unusual.

In northern California, we have the advantage of having the only Genito Urinary oncologist in the Kaiser system. Your case sure wouldn’t we be unusual for her?

They sure are a lot of people with Gleason nines. Are they out of the box? I would imagine this annoyed you at least a little bit! Arghhhh!

REPLY
Profile picture for jeff Marchi @jeffmarc

I am a Kaiser patient in Northern California. I can’t understand, From what you describe, How Kaiser says your cancer doesn’t fit into Kaiser’s neat little box. I don’t see anything about your cancer that is unusual. I don’t see anything they have done in your treatment that is unusual.

In northern California, we have the advantage of having the only Genito Urinary oncologist in the Kaiser system. Your case sure wouldn’t we be unusual for her?

They sure are a lot of people with Gleason nines. Are they out of the box? I would imagine this annoyed you at least a little bit! Arghhhh!

Jump to this post

I do like this doctor, he says I have a very high risk and aggressive PCa, with the pain I’m experiencing I don’t just want to sit back and wait for reoccurrence when I’ve read about add on drugs that seem to have better outcomes. He did prescribe Neurontin if it’s nerve pain but comes with some downside. Not sure I want to get in to that when it could be something else, even the Lupron itself.

REPLY
Profile picture for Brettiquette @brettiquette

I do like this doctor, he says I have a very high risk and aggressive PCa, with the pain I’m experiencing I don’t just want to sit back and wait for reoccurrence when I’ve read about add on drugs that seem to have better outcomes. He did prescribe Neurontin if it’s nerve pain but comes with some downside. Not sure I want to get in to that when it could be something else, even the Lupron itself.

Jump to this post

As long as they give you that second ARSI drug you should be OK for a while. If metastasis pop-up, they can zap them with SBRT. The thing is the standard of care calls for both drugs if you have had active metastasis.

I did stay on Lupron alone for 2 1/2 years. It kept my PSA undetectable, And then I became castrate resistant, and I had to go on an ARSI. In my case, it was Zytiga.

REPLY
Profile picture for VancouverIslandHiker @vancouverislandhiker

60 years ago ? you over due now to come up ! Oh ya , lots of Indian stuff especially if you go into the interior .Vancouver has changed and gotten huge ! Very desirable place for massive foreigner influx . Tons of China people . Airport is right there and China is unlovable on a good day ....so they end up in the Vancouver core . Very high density there . Mostly the rich out of China ( government people ) as the poor get no travel documents. But yes ... I used to live on the mainland ( where Vancouver is ) Now the last 6 years on Vancouver Island . 1.2 hour Ferry away from the big city !

Jump to this post

Good history lesson. Thanks. I was in Vancouver in 1972, so now it’s occupied by the Chinese. My navy cruise book is definitely obsolete. Not the America I grew up in.

REPLY

You seem to be in very good hands with a very good physician and plan of attack that has worked well. While I am not a physician, I was in health care for 40 years, and from what you offer, I wouldn't change a thing...except to maybe thank God each morning and night. Congratulations!

REPLY
Profile picture for Brettiquette @brettiquette

I do like this doctor, he says I have a very high risk and aggressive PCa, with the pain I’m experiencing I don’t just want to sit back and wait for reoccurrence when I’ve read about add on drugs that seem to have better outcomes. He did prescribe Neurontin if it’s nerve pain but comes with some downside. Not sure I want to get in to that when it could be something else, even the Lupron itself.

Jump to this post

I have been taking Turkey Tail tea and Lion's Mane tea for the last 3 years. Turkey Tail mushrooms has been demonstrated to kill prostate cancer stem cells. There is currently a Mayo Clinic drug trial for its use in shrinking breast cancer tumors prior to surgery. One of these days I will start a discussion here on the use of Turkey Tail mushrooms to fight prostate cancer. My PSA at diagnosis was 54 with a Gleason score of 8. My last PSA reading was 0.06.

REPLY

Hi Brett, my current situation is very similar to yours. G 4+5=9, RALP with several less than positive findings and now a PSA of 1.52. I will have a PSMA PET scan on Thursday July 31 and I am bracing for more bad news, although hopefully that I will turn a corner soon. Starting Firmagon ADT on Aug 6 and as long as no disastrous results, will be getting radiation of some sort in late august/ early September. I hope to achieve the same psa numbers you have.
I also have severe ED and have ordered a pump from Amazon. I hope things keep heading in a positive direction for you 🙂

REPLY
Please sign in or register to post a reply.