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Helping my father

User
Posted 29 Apr 2021 at 02:53

Hello. New member here. I'd like to share some info about my father's situation to see what the community suggests or has experience with in terms of next steps. The healthcare system here in the U.S. leaves a lot to be desired so we have to manage our own care as much as relying on the doctors themselves.

My father is mid 70's and has had 2 tests come back with high PSA. On 3/4/21 it was 15.6 ng/ml and on 3/10/21 it was 39.6 ng/ml. He had a biopsy on 4/13 and met with the doctor today on 4/28. Doctor did not show any test results, only verbally said the biopsy was "abnormal." The doctor suggest another biopsy in 3 months (July). I'm not sure what to ask/demand as next steps.

Based on my internet research, it seems there should be a more detailed pathology report from the biopsy. It seems abnormal can mean suspicious for cancer, PIN, Intraductal Carcinoma, ASAP, or something else. I've also seen discussion about getting an MRI or DRE. I plan to ask/demand these things:

  1. Can we have a copy of the pathology report?

    1. This should exist after a biopsy right? It's hard to believe that a biopsy results in a simple "abnormal" phrase from the doctor with no further explanation.

  2. What was abnormal? Atypical prostate suspicious for cancer, Prostatic Intraepithelial Neoplasia (PIN), Intraductal Carcinoma, atypia or atypical small acinar proliferation, or something else?
  3. Why wait 3 months for the next biopsy?
  4. Why not order an imaging test such as an MRI?
  5. Should a Digital Rectal Exam be ordered?

Would anyone add to the list or suggest we not ask/demand certain items? Any advice is appreciated as we go through this initial discovery phase.

User
Posted 29 Apr 2021 at 07:01
You should certainly demand to see the pathology report. A PSA of almost 40 almost certainly indicates cancer, and the fact that he's had a biopsy means that the cells have been looked at under a microscope and they should know what grade of cancer is present and in what quantity.

An MRI would be a reasonable next step.

Best wishes,

Chris

User
Posted 29 Apr 2021 at 09:58
This seems very unusual.

A transperineal biopsy where they take around forty samples from the prostate should be definitive as to whether cancer is present.

A cheaper and less precise TRUS biopsy only takes about twelve samples.

You should ask the doctor if any cancer was found in the first biopsy, which type Dad had, and if there was cancer, what Gleason score it was, or the staging of it.

Which type of biopsy is proposed in three month’s time? Why the wait?

Request an mp-MRI scan in the meantime, and download the free ‘Tool Kit’ comprehensive information folder from the publications section of this website.

Best of luck.

Cheers, John.

User
Posted 29 Apr 2021 at 16:46

Thank you for the great suggestions. I'm sure I'll have more questions later, but this is a great start.

I looked into getting the tool kit, but I can't get past the contact info section because it requires a UK address. Appreciate the help.

Edited by member 29 Apr 2021 at 16:58  | Reason: Not specified

User
Posted 29 Apr 2021 at 19:02
Things are sometimes a little different in the US to the UK where here hospitals generally work to national guidelines set out by NICE (National Institute for Health and Care Excellence). However, some of the most highly rated hospials in the World are in the US and I am surprised your father was not given more detailed information. Maybe standards vary more in the US than In the UK. it is increasingly the case that where a high PSA and a DRE gives cause for concern here that an MRI precedes Biopsy. This enables cores to be taken from suspicious areas. Also, if the Biopsy is done first, it takes 6 or so weeks to heal before a good MRI can be done. An initial TRUS biopsy is very hit or miss and some of our leading hospitals prefer the template one, although this is a more involved 'theatre' procedure most usually done under anaesthesia.
Barry
User
Posted 29 Apr 2021 at 19:24

Originally Posted by: Online Community Member

I looked into getting the tool kit, but I can't get past the contact info section because it requires a UK address. Appreciate the help.

 

You can read all the information online or download it yourself. The "toolkit" is just a printed version of what's on the site. 

Chris

 

User
Posted 30 Apr 2021 at 03:20

Originally Posted by: Online Community Member

I looked into getting the tool kit, but I can't get past the contact info section because it requires a UK address. Appreciate the help.

Just enter this as your UK address. I’m sure it will work!

10 Downing St, London, SW1A 2AA

 

User
Posted 30 Apr 2021 at 16:52

Hi Vtec, 

It seems odd his psa went up from 15 to 39 in a week.  You would expect it to be very similar unless there was something very odd or an error in one of them.  So which one was right?

Did your father go alone to the consultation?  It's not easy to take it all in or to think of the right questions.  He should have been told how many pins were used in the biopsy and how many had cancer and what percentage of each pin.  Then been given a provisional level of severity which is normally Gleason e.g. 4+3=7.

In effect it sounds like he's on Active Surveillance which is for people at risk but not essential that they have immediate treatment.   In general it doesn't go away but can either not change or get very slowly worse so it puts off treatment.  He should have been told that.

Of course it could be different as we don't know what was said.  Some people don't let on that they've refused treatment for one reason or another and need coaching to do what is needed.

Other factors are that in his mid-70s treatment options could be reducing.  Having an operation needs a certain fitness and some doctors make a cut off age of 75.  I can't speak for the USA.  He could be offered Radiotherapy and hormones or just hormones.  That he's been told to return in three months makes it sound like it's treatable so Radiotherapy or an operation could be on offered.   Also we don't know his insurance situation as to how much it covers.   That may not be our business but it adds to the mix.  Hope it works out.  

All the best, Peter

User
Posted 01 May 2021 at 21:30
To everyone, thank you so much. I have more info, but still a bit frustrated with the doc and hospital.

He had a TRUS biopsy on 4/13/21. From the sounds of it, there was inflammation (hemorrhoids) and it was difficult for my father to tolerate under local anesthesia. Because of this, the doctor said the 3 months is to allow for inflammation to go down at which time another TRUS biopsy will be performed under general anesthesia. One line the doctor emailed perplexes me "Not much benefit from doing mri since cannot tolerate another biopsy under local anesthesia." To me, this sounds like the doctor is trying to say what Old Barry said above, that it takes 6 or so weeks to heal after a biopsy before a good MRI can be done. I wasn't aware there's anything to "tolerate" for an MRI because it's non-invasive imaging. The doctor also mentioned that he performed a digital rectal exam which was normal. We are still trying to access the Pathology Report from the biopsy, the medical record system is so terrible and we're dealing with the hospital system's IT department now. Just ridiculous.

New questions:

1) Given this, a delay in MRI for healing makes sense right?

2) Should we insist on a transperineal biopsy?

3) Should we insist on an MRI at the same time as the next biopsy?

I know there were posts above about the US vs UK and insurance situation. Here in the US, my father is on what's called an HMO (Health Maintenance Organization). Basically we have, uninsured, HMO, and PPO (without getting into Medicare/Medicade). HMO is your run of the mill basic insurance where everything is low cost and just one notch above uninsured. I'm also on HMO but press for certain things so it's never been a problem for me. Sounds like I need to start getting more involved in my father's care, he definitely needs coaching. It's just tough because it's a day's drive to his place and doctors here do not allow mobile phones during an appointment.

I'll report back if/when we can get his full biopsy report. Thank you everyone.

User
Posted 01 May 2021 at 21:53

I don't think you can insist on anything right now because you are not really sure what has been done and what the outcome is:-
- did they actually get any samples from the biopsy?
- If so, why would they want to do another one?
- If not, what is there to report in the pathology report?

Once you get the details it should be clearer.

There is little point pushing for an MRI in the near future as, if they did manage to get at least some biopsy cores, blood and bruising will make the MRI unreliable. Even the best mpMRI cannot reliably tell the difference between blood, infection and cancer cells. 

Edited by member 01 May 2021 at 21:57  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 May 2021 at 00:26
Don’t let them palm your Dad off with another TRUS biopsy.

If he is to have another one, go for a transperineal biopsy. I have heard of guys who have had three TRUS biopsies when one transperineal procedure taking forty or more samples would probably have done.

TRUS is being phased out in Britain.

Cheers, John.

User
Posted 17 May 2021 at 23:14
Hi all,

Quick update.

Finally got the pathology report and 6 samples were taken from each lobe with a TRUS procedure. The results are:

LEFT LOBE, CORE BIOPSY:

1. APEX: BENIGN PROSTATE WITH CHRONIC PROSTATITIS

2. MID: ATYPICAL SMALL ACINAR PROLIFERATION

3. BASE: BENIGN PROSTATE

RIGHT LOBE, CORE BIOPSY:

1. APEX: BENIGN PROSTATE

2. MID: BENIGN PROSTATE WITH CHRONIC PROSTATITIS

3. BASE: BENIGN PROSTATE WITH CHRONIC PROSTATITIS

PSA History:

PSA 39.6 (H) 03/10/2021

PSA 15.6 (H) 03/04/2021

PSA 8.44 (H) 05/25/2012

Right now, all we have is a PSA test scheduled in June. No commitment to biopsy until the PSA tests in June come back and no commitment on type of biopsy. I also asked if an MRI prior to the next biopsy is a good idea and received a let's wait for the PSA results and see.

I read that the good news with ASAP is that if it turns out to be cancer, it's not typically life threatening.

I like to plan for the worst and hope for the best, so my questions are, for the group here:

1) Does waiting for the next PSA to take next steps make sense?

2) If the PSA comes back elevated again, should we ask for an MRI prior to the biopsy? Sounds like the biopsy causes damage that makes an immediate MRI not useful.

3) Anyone from the U.S. on this board and can let me know if you'd had success asking for a Transperineal instead of TRUS biopsy? From the people who responded already, seems like Transperineal is the way to go, but I just don't know how to go about pushing the medical establishment in the U.S. to go this route.

Thanks!

User
Posted 18 May 2021 at 00:04

Gee,  vtec,  those are good biopsy results. Benign prostatic hyperplasia, as I understand it, is not cancerous at all. 

The PSA is a bit high, but that could be due to inflamation. 

What does the gang think? 

User
Posted 18 May 2021 at 00:23

Please do not feel you are being pushed aside here but I wonder if you could get additional and relevant local information from an American forum of which I am a member and look in from time to time. It is very much larger than this one which is more UK orientated. You just sign up to become a member. It is really the Prostate wing of a big set up. https://www.ustoo.org/Home

Unlike this forum members can and do name their Consultants and give their views on them and suggest who would be good to go to.

 

Edited by member 18 May 2021 at 00:35  | Reason: to highlight link

Barry
User
Posted 26 May 2021 at 04:36
I finally participated on a tele-doc visit with my father today with his urologist. As expected, when pushed, he opened up all kinds of options that this board has suggested. We have some time to figure out what type of biopsy to elect and due to discomfort for my father on the first TRUS biopsy, it'll either be another TRUS under full anesthesia or a transperineal under local. Not sure how much discomfort there might be with a transperineal.

Also, once I saw the full biopsy report, I was a bit more at ease. The doctor just rushes through things and doesn't explain everything to an elderly man like my dad. I'm glad I got more involved in his care.

Thanks for the positive outlook James.

Barry, great suggestion. I was actually looking for other message boards before I found this one. I find that having an international perspective only helps and I'm thankful to everyone who has provided guidance so far.

 
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