Confused about a friend: Update to post... - Advanced Prostate...

Advanced Prostate Cancer

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Confused about a friend

JWPMP profile image

Update to post: First my apologies for posting such a ridiculous scenario. We don't know details, second hand information, etc. He may be getting excellent care. That being said, since I did post this, I'll update. Jim spoke with the man and just in the course of conversation they spoke of UCSF. The man asked some questions and said he'll consider it. So due diligence done and I've learned to mind my own business if I don't have facts and details. Thanks for your patience.

The details are very sketchy. Our horseshoer's father was diagnosed with Advanced PCa January 2021 after seeing a doctor for severe back pain. His PSA was 2500 at diagnosis. I strongly suggested he might want to encourage his father to go to UCSF. Wondering if anything below makes sense. The man instead is going to a local doctor who treated his wife's breast cancer. Don't know what tests were done, but they gave him a "shot " in the belly. Did only 3 of 6 rounds of chemo ( no idea what kind) but stopped due to hands swelling. PSA down to 9. Several months and it's back in the 60's. Started some "pills". After three months PSA is 17. Here's my biggest question...his doctor said he doubts they'll get it "down to 4"? Is a PSA of 4 a reasonable goal?? And they only test him every three months. Jim is thinking of talking to the man himself about going to UCSF since they are old friends even though they haven't seen each other in many years. But maybe what little we know is reasonable treatment and we should zip it. Just sounds strange and I can't believe anyone in our local small town area is competent for such a challenge. Jim's own PCP who himself has prostate cancer hadn't even heard of Zytiga or PSMA scan. Thank you for listening to my rambling.

38 Replies

If I had to guess, and that's all I can do, they gave him a shot of Eligard. After stopping the chemo they switched to Orgovyx to replace the Eligard due to heart issues. Bottom line UCSF is my opinion as well.

JWPMP profile image
JWPMP in reply to treedown

Thank you...I couldn't even guess and his son has no idea. I almost choked today when their "goal" is PSA 4 and might not make it. Then I thought, what do I know, maybe that's good when you start at 2500. They seem perfectly content with what they're being told.

Our thoughts exactly. Hoping Jim can talk to him soon without overstepping boundaries. Thank you!

My guess the goal of 4 is because that would be the top side of "normal" range maybe?

JWPMP profile image
JWPMP in reply to treedown

I thought that also, but then I was wondering if once you are being treated for cancer maybe that number is no longer "normal" ... I just dont know. I guess I shouldn't worry so much, I have no control over others. But if a friend hadn't been insistent that we go to UCSF, we wouldn't have known what was available and would have believed anything our local doctors said. They were already scheduling Jim for a blind biopsy without doing an MRI first. Thank goodness Dr Carroll stopped us. No telling what sub par treatment Jim would have gotten, makes me shudder.

The goal needs to be as close to undetectable as possible. Next question is what is his Testosterone level. That also needs to be undetectable.Sound like the doc he is using is a pcp not a urologist trained in pca. Find one asap.

JWPMP profile image
JWPMP in reply to teacherdude70

I think you may be right, especially since this doctor treated his wife's breast cancer. I've asked the name several times, but his son can't remember. Testosterone hasnt even come up, so i havent asked, but good point. Anyway, time for a conversation then it's up to him.

I think your right about that, normal range wouldn't mean as much anymore. Also about the possible the subpar service point. I think your instincts are good but as you said there's only so much you can do. At least he knows now that if he does have questions he has a place to start.

JWPMP profile image
JWPMP in reply to treedown

I appreciate that. I know so little about all of the treatments out there that I thought I'd bounce my "misgivings" off of those of you who have been longer in the battle and have more experience. Dave did say his Dad would consider UCSF if "it comes to that". I was thinking it seems to me he's already passed "if it comes to that"...

treedown profile image
treedown in reply to JWPMP

How old is he? For example NCCN guidelines are determined from estimated years of life left. Older men are often not considered for more aggressive treatment if expected remaining years are less than 5 years. He might not be offered radiation or chemo and might just be offered ADT.

JWPMP profile image
JWPMP in reply to treedown

He is only 66 and was in "good" health other than his back pain. He retired from being a Brand Inspector and shortly after was diagnosed. It causes pain in his back when rides, but he's not stopping. When he is not horseback, he has little to no pain. His son said that his Dad was PSA tested yearly due to his Uncle having PCa, and that in one year it went from 2 to 2500. I didn't know that was even possible. So a lot of unknowns.

babychi profile image
babychi in reply to JWPMP

We really need to be our own advocates. Some folks are happy being “in the dark” and trusting their medicos without researching their own condition.

JWPMP profile image
JWPMP in reply to babychi

I think you may have nailed it. Along with the "inconvenience " of the 2 hour drive to the city. Jim was a bit resistant at first, but I wasn't taking no for an answer.

Miomarrito profile image
Miomarrito in reply to babychi

Exactly!

Has he had bone / ct scan have they staged his cancer....metastatic....lymph node involvement?.....

JWPMP profile image
JWPMP in reply to Boywonder56

I'm not sure what they've done. His son says it is in his lower spine and is widespread elsewhere. The details are vague. PSA of 2500 seems it must be everywhere?

MateoBeach profile image
MateoBeach in reply to JWPMP

That information from the son sounds right. He must surely have widespread metastasis with that level of PSA at diagnosis. Scans will confirm this if not already so. Biopsy would not be needed. Best treatment for being metastatic at time of diagnosis is triple therapy started together: Andropgen deprivation (ADT) which must certainly the shot he got and possibly continues with the “pills”. The names would be helpful. That is combined with one of the Advanced Androgen Drugs (such as Zytiga, Xtandi or another, also a “pill”). And finally to combine these with 6 cycles of chemo. Usually docetaxel at 3 week intervals. That is considered the best approach currently available. But if he has been on the ADT for some months, it may no longer be appropriate. Need to get him an appointment for intake at UCSF medical oncology and bring all test , scans, and X-ray results. It is a bad diagnosis but he might have many good years of living if he gets on it promptly. We hope so.

JWPMP profile image
JWPMP in reply to MateoBeach

I just read your most recent post...WOWCarpe Diem

Much prayer on your gutsy, brave venture to live life.

You sir, are an inspiration in courage and heart.

Thank you

Lost a friend to melanoma because he did pretty much the same, stayed with a local doctor to long😢😢😢

JWPMP profile image
JWPMP in reply to larry_dammit

I'm sorry to hear that. Some people just don't know. We would have had no idea to go elsewhere if it wasn't for our friend. Her husband had PCa 20+ years ago and went to Dr Carroll at UCSF. She "insisted" we go there. I'm so thankful

IMHO, either get the person themselves to join the forum and explain what's going on or stay out of it. This thirdhand passing of info is pretty useless.

Hoping for the best possible outcome but you cannot possibly substitute for the person themselves asking the questions and getting the care they need. You could be misunderstanding or mis hearing what the person is saying and so on.

For the best chance of a good outcome, the person with the cancer needs to do the talking.

JWPMP profile image
JWPMP in reply to SteveTheJ

You know, you are absolutely right. Thank you

But at least now I feel it is worth it for my husband to bring up the UCSF subject with this man. Then if he chooses not to, at least he was familiar with the option.

Time to remember that the doctor you started with can't keep you from changing to another doctor. Sounds like a change is in order.

If he has prostate cancer, the only PSA that is acceptable is zero.

This person needs to seek competent medical care! Agreed, he needs UCSF, and he needs it *yesterday.*

JWPMP profile image
JWPMP in reply to NEHOG

Thank you! I'm relieved that I'm not "overreacting ". My father died of brain cancer 10 years ago. My mom has been fighting triple negative breast cancer for three years, and against our protests she waited 2 years for a double mastectomy but her first doctor didn't think it was "necessary ". And now my husband has prostate cancer, so I'm overly concerned with treatment options.

Shams_Vjean profile image
Shams_Vjean in reply to JWPMP

Getting a 2nd opinion regarding newly diagnosed advanced PCa is rarely an overreaction, especially when the 1st. opinion isn’t from a GU-MO. What’s rarer, IMO, is that the specialist’s treatment protocol confirms the GP’s. The further away you get from a center of excellence the more likely it is that the best possible treatment options could be unknown &/or locally unavailable. Urging him to get to UCSF sooner rather than later for the best possible outcome is definitely what I’d do.

JWPMP profile image
JWPMP in reply to Shams_Vjean

Thank you. Jim is trying to figure out how to bring it up. But he is going to talk to him.

Here where we are, they don't even have the basics. For instance, similar MRI capability or whatever you call it. UCSF called all around our area to see if we could get it done here but was unable.

I'm so thankful we had a friend willing to speak up.

MateoBeach profile image
MateoBeach in reply to JWPMP

It is not unusual for many good people to feel unable to talk frankly about cancer, even with a friend. Perhaps especially so. But someone needs to step up and break the silence. If not Jim, then perhaps you? How would one feel if your friend died when we had been reticent in giving our caring advice? Break the barrier of silence around the topic of cancer. Please.

JWPMP profile image
JWPMP in reply to MateoBeach

Jim definitely will. I think it sad that the local doctor himself doesn't recognize that the resources here are limited and send him to a specialist.We'll be seeing this man at a rodeo this weekend so it will be a good opportunity to have a conversation.

Thank you.

Shams_Vjean profile image
Shams_Vjean in reply to JWPMP

Another thing you may want to consider is that the elder with cancer, and perhaps the son too, may be very concerned about the cost of treatments and/or expenses related to travel for treatments. In the bigger cities, where most of the centers of excellence are located, there’s very often a multitude of resources to help lessen the financial burdens of those who need to travel some distance to get the care they deserve. E.g., in some cities there are free B&B’s, sometimes with free meals too, where cancer patients can stay while in town for treatments. The nurse navigator or social worker in the MO’s office/clinic is often aware of such resources. But don’t stop there, because it’s not unusual to discover other or newer ones they aren’t already familiar with.

If pride will not allow for that sort of assistance with costs and other obstacles then what’s at play is an entirely different situation, in addition to the cancer. And if one’s wider world experience is limited then the prospect of navigating such new territories can seem very overwhelming, in addition to the disease management travails which most of us experience without having to travel for our treatments.

I wish you, your husband, and friends all the best!

JWPMP profile image
JWPMP in reply to Shams_Vjean

Excellent points. I had not even considered those things.That could very well be a large part of the issue.

I was definitely intimidated (in my mind) at the thought of setting up and navigating the UCSF system. Fortunately, they were extremely helpful, but not knowing that ahead of time is daunting.

And we are blessed, Jim has great insurance coverage.

So thank you for pointing those things out.

Shams_Vjean profile image
Shams_Vjean in reply to JWPMP

And your friends are blessed to have someone who took that ‘big leap’ and can now offer reassurances that it is not necessarily as difficult as might be initially imagined.

For those over 65 Medicare coverage can be a great help, but there is a maze of decisions to be considered in order for it to work in the best possible way, particularly where diseases like cancer are concerned.

Best of luck!

JWPMP profile image
JWPMP in reply to Shams_Vjean

Thank you !

From the movie (and my all time girl friend) MY FAIR LADY....

'Get him to the M.O. on time,

For God sakes get him to the M.O. on time'

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/12/2022 8:07 PM DST

JWPMP profile image
JWPMP in reply to j-o-h-n

You are so REFRESHING!! Love your posts 😁

j-o-h-n profile image
j-o-h-n in reply to JWPMP

Thank you.... I really appreciate it......Bless you....and the blacksmith's Father...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/12/2022 10:38 PM DST

It's very thoughtful of you to ask these questions for Jim's acquaintance's father. I don't know the extent of the care that your horseshoer's father is getting, but when I was diagnosed with prostate cancer my urologist brought an oncologist on board on day one who then coordinated all the subsequent tests, procedures, etc. involving many specialists. My urologist was only concerned with giving the Eligard shots (through a nurse) and drawing blood for the PSA tests (also through a nurse) once the oncologist became involved.

JWPMP profile image
JWPMP in reply to cancerfox

Wow, how awesome is that! Wish more doctors were that way. Even Jim's PCP who has prostate cancer is being treated by a regular urologist. Of all people he should know. This doctor did however ask who Jim's MO is at UCSF, because he wants his nephew who also has prostate cancer to go to UCSF because treatment here isn't working and he's totally impressed with Jim's treatment. So that was a good thing. Anyway, this young man has done our horses for a several years now and when he showed up one day in tears about his Dad it hurt our heart. Even though they're not close, Jim has known his dad for 40 years. Hoping he'll at least consider a second opinion.

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