1. < Prostate Cancer

How long did you wait for PSMA scan?

Posted by surftohealth88 @surftohealth88, Mar 14 4:30pm

Today we tried to schedule PSMA scan and the first available opening was mid April (*slapping my forehead ). Is this OK wait time ? How soon you had your scan after diagnosis ?

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proftom2 | @proftom2 | Mar 18 2:29pm
In reply to @surftohealth88 "Thanks for sharing your experience. Can you tell me was it PSMA MRI, PSMA PET MRI,..." + (show)
@surftohealth88

Thanks for sharing your experience. Can you tell me was it PSMA MRI, PSMA PET MRI, or PSMA PET CT . Thanks in advance .

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Mine was a PSMA Pet Scan

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1 reply
surftohealth88 | @surftohealth88 | Mar 18 4:57pm
In reply to @proftom2 "Mine was a PSMA Pet Scan" + (show)
@proftom2

Mine was a PSMA Pet Scan

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Thank you .

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dailyeffort | @dailyeffort | Mar 18 7:54pm

What was the wording on the biopsy pathology pertaining to IDPC and/or cribform including number and percent of cores, if given?

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1 reply
surftohealth88 | @surftohealth88 | Mar 18 9:53pm
In reply to @dailyeffort "What was the wording on the biopsy pathology pertaining to IDPC and/or cribform including number and..." + (show)
@dailyeffort

What was the wording on the biopsy pathology pertaining to IDPC and/or cribform including number and percent of cores, if given?

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"1 core involved by prostatic adenocarcinoma, gleason grade 4+3 (grade group 3). Gleason pattern 4 comprises 80% of the core and consisted of poorly formed glands with developed cibriform gland. Gleason 4 includes intraductal component .Perineural invasion and extraprostatic extension are absent."

This was the only core of 14 total taken that has this. Only 3 more have some changes and they are 3+3 .

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topf | @topf | Mar 19 6:06am
In reply to @surftohealth88 "Thanks for words of comfort and encouragement and for sharing your timeline. Means a lot <..." + (show)
@surftohealth88

Thanks for words of comfort and encouragement and for sharing your timeline. Means a lot < 3.
Honestly, I do not count on our present doctor for anything any more, so I am doing my best not to miss any window of opportunity again.
Our UCSF appointment (new doctor) is at the end of April and I want to have everything ready for that app. I do not want to wait additional month or so for scans and pathology slide transfer etc and all that caboodle.

PS: Did you have Decipher done after your biopsy or after surgery ? Our non-doctor refused to do it with explanation - you are going now for treatment so it is of no use. BUT I see here that actually members had it done to help with making plans for treatment so I am confused.

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I heard from two urologists that Decipher was developed to decide on active surveillance in low and intermediate-low risk cases. They don’t think it has much value in higher risk categories.

That said, it is being used to determine duration of ADT with RT and research has shown ir to be a predictor of recurrence risk in high risk Pc.

Knowing your Decipher win’t change your treatment decision, but it is still information you would like to have.

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1 reply
topf | @topf | Mar 19 6:14am
In reply to @kenporter "Insurance can be a real problem when it comes to a PSMA. It took almost 5..." + (show)
@kenporter

Insurance can be a real problem when it comes to a PSMA. It took almost 5 months for me to get the approval for a PSMA. Endless phone calls, letters of request for approval just sickening. I have a BCBS Medicare Advantage plan. When I received my copy of the charge for the PSMA I figured they didn’t want to pay for a 79 year old. PSMA was $14,300 and my co-pay was $375.00. Bad enough we have to battle cancer and then the insurance and out of pocket cost brings so much stress. ORGOVYX is also a hoot with a price of $2,932.00 for 30 pills. Co-pays running $850-$920 a month. God Bless everyone of you and much success on your journey. Ken

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I ended up paying for the PSMA myself, USD 5,300. But I was under shock after my biopsy results. If I need it again, I would go abroad to take it. In Europe or LatAm it is more like 1,500.

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1 reply
surftohealth88 | @surftohealth88 | Mar 19 1:57pm
In reply to @topf "I heard from two urologists that Decipher was developed to decide on active surveillance in low..." + (show)
@topf

I heard from two urologists that Decipher was developed to decide on active surveillance in low and intermediate-low risk cases. They don’t think it has much value in higher risk categories.

That said, it is being used to determine duration of ADT with RT and research has shown ir to be a predictor of recurrence risk in high risk Pc.

Knowing your Decipher win’t change your treatment decision, but it is still information you would like to have.

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Yes, thanks so much for writing and the info. That is what I read also, that having genetic tests can help with treatment plans and predictions, that is why I wanted it to be done.

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surftohealth88 | @surftohealth88 | Mar 19 2:03pm
In reply to @topf "I ended up paying for the PSMA myself, USD 5,300. But I was under shock after..." + (show)
@topf

I ended up paying for the PSMA myself, USD 5,300. But I was under shock after my biopsy results. If I need it again, I would go abroad to take it. In Europe or LatAm it is more like 1,500.

Jump to this post

Yes, in Western and Northern Europe all treatments and medications are actually 100% covered , I think similar is in Canada. Not to mention payed medical leave for a year or more etc, and big pensions but it is how it is here so, somehow we have to manage *sigh

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dailyeffort | @dailyeffort | Mar 19 3:37pm
In reply to @surftohealth88 "Thanks for sharing your experience. Can you tell me was it PSMA MRI, PSMA PET MRI,..." + (show)
@surftohealth88

Thanks for sharing your experience. Can you tell me was it PSMA MRI, PSMA PET MRI, or PSMA PET CT . Thanks in advance .

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Probably too far to be of use to you, but here is a link to a clinical trial at Fred Hutch Seattle that appears to be offering 68 Gallium 11 PSMA PET/CT OR PSMA/MR.
https://www.clinicaltrials.gov/study/NCT04777071

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dailyeffort | @dailyeffort | Mar 20 1:56pm
In reply to @kenporter "Insurance can be a real problem when it comes to a PSMA. It took almost 5..." + (show)
@kenporter

Insurance can be a real problem when it comes to a PSMA. It took almost 5 months for me to get the approval for a PSMA. Endless phone calls, letters of request for approval just sickening. I have a BCBS Medicare Advantage plan. When I received my copy of the charge for the PSMA I figured they didn’t want to pay for a 79 year old. PSMA was $14,300 and my co-pay was $375.00. Bad enough we have to battle cancer and then the insurance and out of pocket cost brings so much stress. ORGOVYX is also a hoot with a price of $2,932.00 for 30 pills. Co-pays running $850-$920 a month. God Bless everyone of you and much success on your journey. Ken

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In 2021, my PSMA PET scan done in a clinical trial for 68Ga-PSMA-11 PET/CT at no cost to me or insurance. A number of the major medical centers have the same and similar trials ongoing. Given the prices of even copays today, it might be worth looking to see if you can get the same scan and contrast that your doctor would order by participating in a trial and pay nothing, if you meet the participant qualifications in terms of cancer stage, comorbidities, etc. Just a thought.

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