New and Need Guidance: What questions to ask about prostate cancer?

Posted by vulcan @vulcan, Mar 9, 2023

Hello everyone, sadly I have had to join this area of the internet which we don't wish on anybody.

I am on here because my father who is 70 had a blood work done on 1/23 with a PSA of 26 and another blood work on 2/23 with PSA 20.

We are in Michigan, USA fyi.

Completed a 3T MRI on 2/23 and today got the results showing a Pi-RADS 4 with a lession found to be the size of 8mm. The doctor also mentioned that the MRI could also see the close by lymph nodes which looked good.

The doctor ordered a Fusion Biopsy, which they will call us in the next 2 weeks to schedule a date for.

We were all caught off guard and uneducated in the matter leading to no real questions asked and following whatever the doctor says to do.

I wanted to join the forum and ask this kind group of individuals for guidance through this process.
-What questions to ask the doctor?
-What specific types of biopsies are most accurate and useful?
-Is the "Fusion Biopsy" that the doctor ordered the proper one?
-Is there other types of biopsies that we should ask for?
-Is doing a biopsy risky in any way, and can it worsen a situation?
-Is there ANY reason to avoid doing a biopsy?
-In case of bad biopsy results, what treatment options are there? (I would assume you're going to say that this completely varies until a pathology report)
-What hospitals/clinics/locations would be best to go to for the best treatment?
-Is a biopsy very likely to show cancer with a Pi-RADS 4 and lession of 8mm?
-What words of encouragement would you have for myself/my family/my father in this situation?
-Is this something to be absolutely worried sick over?
-Is this something where life goes on with manageable treatments and major or minor life altering events?
-Is this something that we should not worry too much about at all?

IF I am asking ANY dumb questions, please forgive me for my ignorance and uneducated questions. This is obviously a world that nobody wants to go into but unfortunately a lot of us are in.

Current treatment location is at:
Michigan Institute of Urology
St. Clair Shores, Michigan

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

@vulcan

Thank you guys for your replies. I will definitely look into that book.

When and why is the PSMA scan used?

What is the reason you guys are choosing RALP over treatment?

Does having radiation disqualify you in any way from having RALP later on?

I do have one main concern. The urologist that we are working with seems pretty young. I did a quick search and bringing up that he has been practicing since 2016. This does not make me feel very comfortable. I felt ok early on seeing this urologist but now that things seem to have gotten more serious I honestly don't feel comfortable. Not that he's done anything wrong because I think at this stage it's more of just following the motions of run this test and run that test. In looking online I see that he's been practicing since 2016, this does not make be feel very comfortable at all. How would you guys feel being in my shoes and what would you do in this situation?

One thing seems odd to me is that the doctor said that a lesion of 8mm was found (didn't mention where exactly) and a Pi-RADS 4 category was assigned, and that there's about a 40%-45% chance that it could be cancerous. In looking online however, I'm seeing that chances of cancer with a Pi-Rads 4 are more like 60%-75%. Does this strike anybody as odd for a doctor to give it such a drastically different % chance or is there more taken into account that I might not understand?

So far I understand the process of blood test PSA, the range you should be in, I understand why an MRI was performed, getting a Pi-RADS category, I understand why a biopsy is needed, ordering a biopsy (this seems tricky as everybody seems to talk about different kinds which I still am not too sure what to do), I also understand that the results of the biopsy will come with a pathology report which will provide a Gleason score if anything is found (I also understand the different scores and how they are assigned, though not educated yet on treatment options for each score).

As far as getting a pathology report. What exactly would happen if a biopsy comes back showing no cancer? Does this mean all is good and on you go, or does this mean you continue monitoring PSA regularly and most likely continue performing biopsies until something is found?

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@vulcan, I'd like to add my welcome. I agree with the others who have posted helpful replies. You are asking all the right questions. As you search for information and experiences about prostate biopsies, you may appreciate these related discussions:
- Is a biopsy only way to diagnose prostate cancer? https://connect.mayoclinic.org/discussion/is-a-biopsy-only-way-to-diagnose-prostate-cancer/
– Anyone have an Ultrasound-Guided Transperineal Prostate Biopsy?: https://connect.mayoclinic.org/discussion/anyone-have-an-ultrasound-guided-transperineal-prostate-biopsy/
– Prostate transrectal biopsy https://connect.mayoclinic.org/discussion/prostate-transrectal-biopsy/

Have you considered getting a second opinion from a cancer center?

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You don't mention if you are spirtual or Christian or what ever , thats not anyone elses buisness. Please do nt take my words as offesive or being any thing les than encouraging. Pray and continue to pray ! for your Father, his Drs. and the people who will be careing for and treating him
I was recently diagnosed, and have opted for removal surgery. the moment I was given my psa the latest one in late 2022 was 32, sleep became very difficult and didn't seem to be restful. Prayer changed that for me. Yea the upcoming surgery is a stress , but God is BIGGER and by far MUCH more powerful. He will bring me thru this. Amen

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Dear Vulcan, you and your father are in the same situation that all of us were at some point. I was diagnosed in 2018 with PCa with a Gleason score of 4+4 after a traditional biopsy with no MRI. My Urologist gave me Dr Walsh's book to read before I made my decision on treatment. The most important information I got from the book was that the success rate for treatment was much better at a Cancer treatment center. They are much more on top of recent research, which is advancing rapidly, and more likely to have the most advanced equipment, which is also advancing rapidly.
Since each form of treatment comes with its own specialist, you may get different advice from different specialists.
I made my decision to use proton beam therapy based on talking to individuals who had tried different therapies, which I don't recommend. I would've much preferred a doctors help but my GP couldn't even advise me.

My decision was based on the potential of damage to my body based on the different treatments at that time. Things have changed, so do your own research. I had 20 doses of radiation, but they are now doing 5 treatments in many cases.
I just had my 4 year checkup and PSA was .1. Since I still have a prostrate, it can still generate PSA. If it gets above 2.0, they'll look for cancer. The only other thing that generates PSA is the cancer. If you have surgery, any increase in PSA will be from cancer. I'm 78 and age does come into play regarding treatment. The younger you are, surgery may be better and the older radiation.
This is likely to be a stressful time. It was for me. The more I learned and made my decision, the less stressful. My life now is full and I have no regrets.
The best to your father!

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The most important thing I can tell you is to make sure your doctor is up to date on current treatment. My Urologist wanted to go right to biopsy even though my psa went from 4.1 to 3. All my tests were borderline and the DRE showed nothing. She told me the MRI was too expensive and no insurance would pay for it. MRI cost $950 biopsy $20k.
Every test I get I toughly research the results online. On most things she was wrong about 50% of the time. There are also some good seminars on youtube. I have spent 100's of hours researching my disease and learned many things the medical industry just avoids. After 6 months of Lupron therapy I was barely functional. Reading on a number of sites I found out most people have low testorone after therapy. After TRT I almost feel normal. and my PSA is 1. Because of an experiment in the 60's where one of three people got worse on TRT the phrase Testorone is like pouring gasoline on prostate cancer.

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@perrychristopher

Unfortunately w/o doing a biopsy I don't believe there is any way to determine of one has PCa or not. I had a standard biopsy but was put under for it. Not sure what they do for a Fusion biopsy. I too am from Michigan and was treated by MIU. It is good your Dad is getting the biopsy so soon. I had to wait 2 months for mine. If it is PCa and hopefully its not your Dad will have multiple options with the 2 most likely being RALP surgery or Radiation. I chose the former as I was 60 when operated on with no other health issues. I had no complications from surgery to date with pain or incontinence. But as someone else replied don't get too far ahead of yourselves as there is a good chance it may not be PCa. If you want you can talk to his Urologist and ask how many RALPs he has performed just in case.

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It’s a relief to have someone post that they have had no complications with pain or incontinence. I just got my biopsy results back last week - 6 Gleason - am 61 with no other health issues and considering the RALP option. Your post was very encouraging. Thank you

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@maxvt

There are NO “dumb questions!” Ask everything that comes to mind, write them down when they come to you so you don’t forget.

When you hear the word “Cancer,” becoming worried sick is normal and automatic. There are good stories; I went from “Cancer? Me?” to “It’s all gone? Really?” in six months during 2022.

Yes, get the book by Patrick Walsh. Read the “highlighted in gray” bits at the start of each chapter to determine whether you want to delve further into that chapter.

I had a PSMA scan, my Urologist was happy to say it was covered by insurance. This showed that my cancer was confined to the prostate gland.

I had an biopsy, revealing some (Gleason scores) of 3+3 , 3+4 and 4+3. Learn about Gleason scores.

I spoke with a Radiation Oncologist and with a surgeon to help me understand upsides and downsides to each therapy.

Read all the relevant articles you can from reputable sites such as MayoClinic,com, Cancer.org, MyClevelandClinic.org, to name a few. Print and compile into a binder is helpful.

After researching, I chose RALP from a surgeon, Dr Aaron Laviana, here in Austin TX, one my Urologist has worked with. When I informed my Urologist, Dr Trotter, in Austin TX, of my decision, he said that’s the choice he would have made in my case.

I chose surgery, as I read that radiation after surgery can be beneficial if needed, but, surgery after radiation is not a very viable option.

Weeks prior to the surgery, I spent several weeks of PT/Kegal exercises and I was fully continent after catheter removal, which was 10 days post-surgery.

My Urologist told me that the Pathology report indicated that the gland had another “node” of cancer that would have survived radiation.

Right after detection, I received a shot of Lupron, to slow/halt cancer growth. I had “hot flashes” due to that but got Venlafaxine 37.5 2x daily to control those.

When this began, in March 2022, I was 72 and had a PSA of 19.8. Now it is undectable.

Holler back with questions.

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At what point of the process did you have a PSMA scan? Before or after biopsy?

How did you get in contact with an oncologist? As of right now we are only speaking with a urologist. I'm assuming you spoke with an oncologist only after a biopsy and when you were planning treatment options?

Were you told exactly why surgery after radiation was worse than pre radiation?

Very happy to hear you are doing good right now

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@bens1

Vulcan: sorry about your Dad having to go through this stuff.

Fusion Biopsy is a good choice.
Ask your doctor to test for aggressiveness using the biopsy material: https://decipherbio.com/
Nccn.org will give you guidelines as to what to expect through different phases. It was created by DR’s for DR’s and patients.
Look at viewray.com. They make the only radiation machine in existence that combines an MRI and Photon radiation machine into one operating unit. The greater the MM in radiation treatment the greater the chance of healthy tissue issues. I had 5 radiation treatments.
Get a second opinion wherever you can. I had Gleason 3+4 restricted to the prostate and a 20.2 PSA. Keep asking questions. Its a process and coming back to this web site will help you make better decisions and provide emotional support for you and your Dad.

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Do we need to ask for them to test for aggressiveness before they run the biopsy in order for them to get an additional sample, or can they test for it with just the normal samples they extract?

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@vulcan

Do we need to ask for them to test for aggressiveness before they run the biopsy in order for them to get an additional sample, or can they test for it with just the normal samples they extract?

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They take the biopsy material and send it off to the company that runs the test such as the decipher test. About 2 weeks later the urologist gets the report. You can get the report yourself if you fill out a form with the company to do so or ask the Dr.

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@southgeorgia

It’s a relief to have someone post that they have had no complications with pain or incontinence. I just got my biopsy results back last week - 6 Gleason - am 61 with no other health issues and considering the RALP option. Your post was very encouraging. Thank you

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You are welcome. Good Luck. Glad to hear you are at a Gleason 6. I was a 7 (4 + 3). 2 biopsy cores came back 6 and 2 came back 7 for me. I had to take action. A Gleason 6 is good that cancer is very early stage and your chance of full recovery with no BCR is excellent. It's bad in the sense as now you have 1 more option which is waiting and watching. If you choose to watch make sure you are getting PSA checked every 3 months at least (I'm sure your Urologist has discussed this with you already).

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@vulcan

At what point of the process did you have a PSMA scan? Before or after biopsy?

How did you get in contact with an oncologist? As of right now we are only speaking with a urologist. I'm assuming you spoke with an oncologist only after a biopsy and when you were planning treatment options?

Were you told exactly why surgery after radiation was worse than pre radiation?

Very happy to hear you are doing good right now

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I had the Biopsy prior to the PSMA scan, the PSMA scan showed my cancer was confined within the gland and had not invaded any of the surrounding tissues. Based on that, my Urologist wanted me to have a Lupron shot, as Hormone Therapy, to reduce testosterone production. Testosterone feeds the growth of the cancer. Ergo, the cancer should not grow or spread due to the Lupron. The Lupron DID give me hot flashes, several times each day and night. The Venlafaxine that I mentioned did provide relief.

When my Urologist told me that I had cancer, we briefly discussed the options, radiation and surgery. In that visit he gave me name and phone numbers of a Radiation Oncologist and of a Surgeon/Urologist. This was after the biopsy.

By the way, my wife was accompanying me to all of these visits, and the doctors were kind enough to allow me to record the conversations on my phone. (The later versions of Microsoft Word have a "Dictate" feature from the menu. So, in Word, I clicked the Dictate button, then started playing the voice recording, and, if the voices are clear, you have a Word document of the conversation, a document that needs editing as it is all run together and you need to insert headings here and there to identify the speaker, for readability's sake.)

After the Radiation Oncologist visit, I was leaning towards radiation treatment.

I spoke with the surgeon, whom my Urologist had worked with. In this discussion, he stated: "And so, from a cancer standpoint, the survival benefit in your case is pretty similar between surgery and radiation, I would say. The main difference is if you have a recurrence from that with radiation your treatment options are much more limited as opposed to surgery. With a recurrence after surgery, you can get radiation afterwards. Then, otherwise, if you're going to live a very long time you worry about secondary cancers with radiation as leukemias and lymphomas. But those are rare."

After the surgery, i had some discomfort, which is what a call "Pain rating less than 1." I had some pain pills from my Urologist but did not use any.

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