Upcoming Appointment - Nervous

tbjhc

So this is my first time posting. Since the first call from my doctor on July 9th telling me I had an elevated 5.02 PSA I have been worried. I finally have my appointment with the urologist tomorrow and I am thinking I'll be having a DRE and may be referred for a biopsy based on my numbers and what I've read online (I know I shouldn't have, but I have been searching Google for answers for the last month)

Background - 57 years old, no symptoms - at least none that I associated with Prostate; I have had nausea and lower back pain (both worse at night) for months.

PSAs -

Jan 19, 2022 - 2.83 (doctor never mentioned this as a concern)

Mar 9, 2023 - 2.88 (again, doctor never mentioned any concern)

July 9, 2024 - 5.02 (doctor called and said we would discuss at upcoming appt -ordered repeat test)

July 19th - 6.78 (this was repeat test, doctor then ordered Free and Total before my next visit)

July 29th -

Total PSA - 6.3

PSA Free Value - 1.28

PSA % Free - 20%

Aug 2nd - Had my doctor's visit and he said I needed to see a Urologist.

Seeing the urologist for first time tomorrow, Aug. 20th.

As my PSA went up so much from last year, and then again so much in the ten days in between in July (going from 5.02 to 6.78) has me freaked out.

So any input on what exactly I should expect tomorrow, also any suggestions on what questions I should ask my urologist or tests I should ask about would be appreciated.

Wheel

He should immediately order MpMRI, get that before Biopsy. This way the biopsy can be guided by the scan results called a MRI fusion guided biopsy. Then await Pathology results after biopsy and learn what each biopsy core holds in Gleason score. Then a genomic Decipher test depending on Pathology and PSMA Pet.

Marlon

What you should hear is if the doctor feels any abnormality with the Digital Rectal Exam. Elevated PSA can be caused by things other than cancer. The doctor should explain how slow-growing prostate cancer is, and how effective treatment can be. And the doctor will recommend the next steps. The MRI procedure can take some time to schedule and then a biopsy will take time as well. So you might ask about the worst case timeline. After your visit, read as much as you can about treatment options appropriate for your age, so that if it comes to that, you are prepared to ask informed questions. The book by Dr Patrick Walsh, Guide to Surviving Prostate Cancer is what I used. Don't panic. It was months between my first doctor's visit to surgery.

Wheel

He can also order ExDxo urine marker test that can be done at home. This test also identifies markers to identify whether a cancers gene are likely to be of a more advanced or intermediate grade versus lower grade or Gleason 6.

Don’t worry about the biopsy there are two schools of thought, the perineum entry or rectum entry. The perineum entry according to studies has less infection rate compared to the rectum rate but these are statistical numbers that are low either way and the likelihood small. You will certainly have people swear by one or the other and discuss they had an infection. This group being small will likely have members in that group. Also you have members under active surveillance and have had three rectum biopsies with no adverse effects. Some Urologists put you on an antibiotic for 10 days afterwards, my urologist put me on two antibiotics. I never had an issue. I think it’s also the Doctors care. The perineum entry although not new is still not done as often as the rectum entry. The Doctors must also be trained in that fashion and in certain hospital settings some major hospitals have opted to have their urologist’s only do the newer entry because of lower infection rate. My urologist part of a major hospital urology dept that did not have any urologist’s doing the perineum, only rectum. He told me in their practice he could not even recall the last time any patient had an infection.. He thinks when it happens they are not necessarily following their after care( his belief). I clearly was not going to a different urologist and went with the rectum. Quick, no real pain. In two weeks I was off to Switzerland.

Wheel

Clevelandguy

Hi,

Good advice from the above survivors. First step should be an MRI and if suspected areas are identified then a biopsy should follow based on the MRI data. Only the biopsy can confirm that you have cancer and grade it with a Gleason score. The MRI will also give you the size of your Prostate, hope it’s large and you just have BPH(Benign Prostate Hyperplasia). Good luck….

Dave 3+4

Wheel

Marlon is so right about timing. Everything seems in a orderly fashion that takes weeks.
Don’t let the Doctor say, oh your PSA went down, that means you don’t have cancer. Mine went like from 1.9 for years to 3.0, dropped 2.6, then 2.4 then back up. My oncologist for non Hodgkin’s lymphoma I have seen for 15 years said exactly what I said above. Oh you don’t have cancer because your PSA went down. In his benefit he only treats Prostate cancer patients whose cancer has spread and is involved in chemotherapy where these prostate patients their PSA is only going up. My urologist though fortunately was concerned about my fluctuating PSA and was willing to get me an early MpMRI.

Timeline for me

April 2022 through now. PSA jumping around. Never really high

Nov. 2023 ExoDx Urine marker test

Jan 19th, 2024 MpMri

Feb 7th, 2024 Biopsy (he added me to his booked biopsy schedule due to 2 trips to Switzerland and biopsy might not be then until Mid March

Feb 16, 2024, Pathology results and requested Pathology send tissue to Decipher for Genomic testing.

March 1, 2024 PSMA Pet Scan

April 19th, first consultation with Surgical oncologist

April 26th first consultation with Radiation oncologist

June 5, 2024 second opinion with another Radiation Oncologist (different facility)

June 5, 2024 second opinion with another Surgical Oncologist (who I decided on) (different facility)

Surgeon had 4 to 6 week time on his calendar which kind of meant earliest around mid July. With summer here and daughter home I picked August, 15, after returning our daughter to college.

Basically from diagnosis in mid Feb with Pathology to surgery was 6 months. They say 6 months is a fine window.

Marlon

Here's what I learned about PSA (and someone correct me if I am wrong). PSA is a measure of how much prostate tissue you have, not necessarily cancerous tissue. It's the rate of change in PSA that indicates rapid growth, and possibly cancer. My PSA was just above the "normal" range for my age (at 4.2) so it was the digital exam that indicated a problem.

tbjhc

Had my first visit with the uroligist today. DRE -said was ok.Scheduled for pre and post gadolinium MR of the prostate on this coming Monday.

Wheel

tbjhc,

That is good news it is happening so quickly. My DRE was normal right up to surgery so this is a first big step. Could Definitely still be BPH. My very first MpMri, was scheduled in May 2022 for July 1, 2022 and was negative showing maybe what was past prostatitis scarring. But it was in April 2022 when I first believed something was going on, which turned out okay as I was then kind of on my own active surveillance with just my PSA being watched quarterly bouncing around. In October 2023, we did the ExoDx urine marker test which above 15 says you likely should consider a biopsy, mine wws 69. Those results were in November. My PSA still jumping but with Thanksgiving and Christmas coming and a trip to Europe, we pushed a second MpMRI to Jan 15, 2024. Earliest scheduled could have been late November so it was not that far. The second MRI found suspicious lesion and was good they had an 18 month baseline MRI to compare with. The rest of the timeline is what I said earlier with the biopsy coming in Feb. 2024 which yield unexpected but exoected results. New found Lesion turned out benign from 3 pointed biopsies from that area but the other cores did have cancer, Four cores Gleason 6, two cores favorable Gleason 7. (3+4), and the one that pushed decision making quicker forward was the one Gleason 8. Then the Decipher test was ordered on the tissue and my score was 69, way up in their measurement although considered intermediate, 70 would have put me in advanced. What I am saying regardless of MpMri always stay vigilant. I had a good almost two years of my own active monitoring leaving me to go about my way.

Wheel

last thing, don’t let this consume you. Now that you are aware and hopefully its just a large prostate with BPH. Knowing that typically most prostate cancers are slow growing , following a PSA for awhile is no problem and even then if it does turn more aggressive it’s caught early. I am now 6 days post my surgery doing well now. If not for the catheter you would not know I had surgery. My wife is driving but I go to stores with her, and walking a mile a day.

tbjhc

Thanks, that is good advice. I'm trying to not let it consume me. Things are getting busier at work so thar is and will help me focus on other things. Also, I am do thankful MRI will happen Monday as the next opening they had was Sept 20th.

Thanks for sharing your journey and glad to hear your recovery from surgery is going well.

tbjhc

https://csn.cancer.org/discussion/comment/1717516#Comment_1717516

Thank, that is what I hoping for BPH.

Like you and others shared, doc did say biopsy will be next step depending on what my MRI shows.

tbjhc

Thanks. Like you said, I had DRE and was glad to hear he didn't find anything. That makes me feel better going into MRI.

Thanks for the book recommendation...I am going to check it out.