Screening

[MyDad76]

What kind of screening did you have to figure out disease progression/spread? Did you have to have full body screaning?

Thx

[JamesAtlanta]

When I was diagnosed 3 years ago, I had a prostate biopsy (that’s where they determine your Gleason score - how aggressive your cancer is), a CT scan and bone scan.

Back in December I had a PET scan and a prostate MRI. The PET scan is the most sensitive of all the imaging tests. I also have a circulating tumor cell test annually.

Has your dad had any of these tests?

Good luck on the journey - we are all here for you and your family!

James

[MyDad76 in reply to JamesAtlanta]

My dad was diagnosed during turp procedure for enlarged prostate. That was in September 2016. Gleason: 4+3 = 7, PSA 5.2. He was put on bicalutamide only, his PSA intially dropped to 0.23, dose was lowered from 150mg to 50mg after three months. His PSA climed to 0.62 as of this month. I have taken him to three urologist and non of them wants to do either screening or alter his treatment, as they all claim his treatment is appropriate. I will not go into long story about our health system... Just briefly - all hospitals are part of public system, private system is very limited - more or less to consulting/second opinion. In the private system I can defently get MRI if we pay out of the pocket. But PET scan is only available in the hospital settings - and all hospitals in the country are part if the public health system. Getting referral from doctor for scaning is... well bloody difficult. What I can get is full body MRI. I hope that would do to see how limuted/spread is disease? I also know that his treatment should/could be different - but in our system you get what is cheapest till it works. Sorry for the rant!

[JamesAtlanta in reply to MyDad76]

Sorry about the insurance issues...

Seems like a whole body MRI and a bone scan would be the bare minimum of scans needed to determine if he has metastatic cancer, or if it is localized. And a prostate biopsy to determine aggressiveness of the cancer

Others may weigh in to offer advice, including how to deal with your health system if you share what city/country you live in. There are some amazing and resourceful friends on this site!

Best,

James

[MyDad76 in reply to JamesAtlanta]

Thanks. We live in Slovenia (small country in Europe, used to be part of Yugoslavia).

[vandy69 in reply to MyDad76]

Good Sunday Morning MyDad76,

In the US, an Axumin PET/CT is one of the best full body scans, but your Dad would probably have to travel and his PSA is too low for it to work.

I have been in this battle for almost six years (please see bio for complete treatment history). Once when PSA was rising, I actually had to pull for it to rise higher for a scan to be effective. Your Dad may be in that same situation for now.

Best wishes. Never Give In.

Mark, Atlanta

[kpw2018 in reply to MyDad76]

in december 17, was diagnosed,, PSA 91.7 Gleason score 9's,, had bone scan, ct scan, x-rays, Feb 6th they talked me into removal of my prostate. Put on Lupron when i got the bag off me,, now im waiting for radiation. 4 month june 6th,, incontinences is a big issue for me. Not working out very well. Also all my other tests, showed cancer wasnt anywhere else, thank god. some cells left for the radiation to take care of. Wish i knew more, and if im doing everything right. Tell you dad, to hang in there

[tango65]

I had a Gallium 68 PSMA PET/CT scan which identified lymph nodes metastasis.

[MyDad76 in reply to tango65]

I read about it. Unfortunatelly it is not available in our country And my dad is not keen on travelling abroad.

[E2-Guy in reply to tango65]

I had the same scan which also identified lymph node metastasis. The 68Ga and F-18 are supposed to be the most sensitive scans currently available.

[NewAgeBrother in reply to tango65]

Hi tango65, yes I plan to have that done in Germany as it can show micro-stasis that would not appear on a bone scan. Where did you have yours?

Also, I have read (I believe from Dr. Peter Scardino's excellent book) that one's PSA has to be 20 or higher for any metastasis to appear on the bone scan.

[tango65 in reply to NewAgeBrother]

I had the scans done at UCSF, and at UCLA. They can detect metastasis with PSA around 0.4, but the sensitive of the test increase if the PSA is higher, around 2 or higher.

[NewAgeBrother in reply to tango65]

Wow, that's great to know. Definitely worth a trip to California.

[paulofaus in reply to NewAgeBrother]

I've never had a PSA of above 16 and I have had plenty of scans (CT, Bone, PSMA) confirming metastasis.

[Tall_Allen]

Could you please explain more about his situation? Undiagnosed? Newly diagnosed? Recurrent after treatment? Metastatic? Castrate resistant - on hormone therapy? What is his current PSA? deciding on which scans are useful depends on the purpose of the scan. What country are you in?

[MyDad76 in reply to Tall_Allen]

Hi, I just desribed it in reply to JamesAtlanta. Hope it helps?

[Tall_Allen in reply to MyDad76]

So, if I understand correctly, his doctors just ASSUMED that his prostate cancer was incurable and started him on hormone therapy, instead of discussing potentially curative radiation therapy? I can understand how the TURP might preclude surgery if he doesn't have enough urethra left to reattached. But why was radiation excluded? I don't think he needs a scan, I think he needs to see a radiation oncologist.

[MyDad76 in reply to Tall_Allen]

They assumed prostate cancer will not kill him and hirmone theraphy would be enough to keep it at bay. In our system urologist needs to refer you to either radialogist, oncologist etc. Until they ASSUME his cancer is limited we will not get a referal. Yes stupid. But this is what I have to deal with. So I was thinking that we would go for screening to first determin how extensive is his disease. If it is limited I would at least have a bit of peace. If it is extended we would get the blody referal. The only type of screening I can pay out of the pocket is MRI. They will not screen within public system untill tgey ASSUME his PSA is not high enough...

[FCoffey]

Whole body MRI is a good place to start if you are concerned about distant metastases. Given your description I'm not sure that is the issue, but if you want a whole body scan and MRI is available go for it.

[Tall_Allen]

Yes, his PSA and intermediate grade PC make any kind of scans useless. They should be ASSUMING that his cancer is localized and curable, unless there is reason to believe it isn't. That's the default assumption. I really don't think that paying out of pocket for a scan will convince them - they will just argue (rightly) that it is way too early to detect metastases. Can you ask for a second opinion from a different urologist?

Is he older with significant comorbidities? Is that why they don't want to treat him?

[MyDad76 in reply to Tall_Allen]

He is now 76 (74 at time of diagnosis) and has no comorbidities. I will try to get to an urologist that will LISTEN & CARE. I have already been to three without success.

[Tall_Allen in reply to MyDad76]

And how do they answer the simple question: Why do you think he is incurable?

[MyDad76 in reply to Tall_Allen]

The do not think he is incurable. They think that at his age cancer will not kill him thus do not see the needed for "more aggressive" treatment. I doubt any of this guys has been on hormones for years as they take them so lightly. I do not know for others but my dad has suffered quite some side effects from bicalutamide alone...

[Tall_Allen]

Ageism is a problem in medicine. I agree with you - If he is in good health, why shouldn't he live to 95 or 100 cancer-free and without drugs? It should be his decision to make, not theirs. I share your frustration.

Meanwhile, he should be taking 10 mg tamoxifen to prevent the breast irritation and growth that comes with Casodex.

[larry_dammit]

Full body CT with contrast. Nuclear scan can’t remember the name of it. And a full blood panel

[MyDad76 in reply to larry_dammit]

What was your PSA level when you had this tests? I'm reading that with low PSA some imaging tests might not show spread.

[larry_dammit]

Went from 4 to 33 in 3 months, if it weren’t for a swollen lymph node in my groin and a knife in my back when I tried to breath who knows how far it would have gone. Also a alkaline phosphate level of 900. 90 is normal

[Break60]

I had full body MRI to find pelvic lymph nodes in 2015 and ct pet with axumin to find femur met in 2017.

Today I would have ct pet with axumin or PSMA 68 ct pet if Psa increased to 2.0.

Bob

[Joeym1040]

I agree with everything Tall Allen has said. We are spoiled in America, and feel your pain and frustration. One good point is that Pca is usually slow progression. Good luck and we will all pray for you and your dad.

[pinejog]

Hi My current routine is CT and MRI screening every 6 months My first chemo infusion is Thursday PSA jumped to 91.

Xtandi stopped working after 14 months.

[tallguy2]

I agree with some of the writers, the PET scan with Axumin is the way to go. It reveals precisely where the PC is located. And this can influence a treatment recommendation.

[Hidden]

I'm imagining that casodex (bicalutamide) is favored over Lupron/Eligard just because of cost. Both are agents that provide Adrogen Deprivation Therapy (ADT), which drives testosterone levels toward zero. Testosterone is what prostate cancer feeds off. Here's hoping that the casodex keeps things under control. Some men on this site who have had terrible problems with ADT have opted for orchiectomy surgery. Not a pleasant thing to consider, I know. We are all pulling for you and your father.