Repeat biopsy dilemma - don't know what I should do
Posted , 11 users are following.
My uro wants to do a repeat biopsy on me. Although my total PSA has come down from 11 to 6 in the past 15 months, my phi (prostate health index) score has gone up. The phi says I have a 33% chance of cancer on biopsy.
I also have a 4KScore from last summer. It was 3%. 4K predicts likelihood of Gleason 7+ cancer and metastatic disease over 20 years.
I also have three 3T mpMRIs that were negative over the past 30 months. None of the MRIs assigned a PIRADS score because no lesions were seen - only mention of BPH nodules and inflammation-prostatitis.
I was considering HoLEP. My PVR is now close to 300 cc. It was 120 cc last week, 280 cc today, and 370 cc four weeks ago. I had one odd reading of 5 cc two weeks ago, but I didn't have anything to drink that morning and voided 900 cc the night before.
My most recent ultrasound measured a prostate volume of 200 cc, up from 175 cc 13 months ago. My last MRI measured 130 cc. I believe MRI is more accurate, but in any case, my prostate is pushing up into the bladder, and my MRI measurement, it would probably still be 140-150 cc.
My PSA density is around 0.035 and my free PSA is around 31-32%.
Four years ago I had a negative 16 core MRI-guided biopsy that was negative for cancer and negative for PIN (pre-cancerous cells).
I did a Michigan Prostate Score (MiPS) urine test in 2015 and it showed 11% chance of aggressive cancer. My PCA3 was 20 and my TMPRSS2:ERG = 0, for an overall risk of 24%.
My doc wants to repeat biopsy to make sure I don't have cancer. If I had HoLEP and later discovered cancer in the peripheral zone, he said it would make radical prostatectomy difficult.
I think he wants to do a saturation biopsy under sedation.
That can cause me to go into urinary retention as the prostate swells further.
Now, I don't know what to do.
Maybe repeat the 4Kscore? Maybe another type of test?
I've had three straight negative MRIs and a low 4K. I just want to pee normally and get HoLEP.
Not sure what to do now, and my life has not been the same since my 2015 biopsy. My PSA has never come down since that. And I bled like a pig - and had rust colored, blood-tinged semen for 3.5 years after the biopsy!
Need to bounce this off you guys.
I have utmost respect for my doctor but I am scared.
Thank you all.
Michael
0 likes, 25 replies
Light1 MichaelVM7
Posted
Michael,
Not sure where you live, but I would find a urologist at a large university medical center and go for a 2nd opinion before having a biopsy. If you are in the LA area or can go there, I would recommend Dr. Mark Scholz in Marina Del Rey.
alex23431 MichaelVM7
Posted
Hi Michael,
do you why your PVR is jumping like that?
If you are planning to do HOLEP soon then maybe you do not need a separate biopcy.
Of course the decision also depends on how old you are. If you are relatively young maybe ask
at least for a second opinion.
MichaelVM7 alex23431
Posted
HOLEP sends tissue for pathology only from the transition zone (median lobe) and adenomas (BPH overgrowth), not from the peripheral zone where most cancers begin.
Except for the phi test, all my markers point to BPH and not PCa.
I may look into genetic tests and a repeat of PCA3.
Three MRIs and no signs of any lesions with decreasing PSA and low 4KScore --- I just am crestfallen to think I am facing a biopsy and possible catheterization from it.
JerryR MichaelVM7
Posted
Michael, do a Google search - Dr. Dora HoLEP youtube - and see the HoLEP procedure being performed. I went to Dr. Dora for a HoLEP but he said my prostate was too small (40 gms) for HoLEP so he did a HoLAP procedure. I recommend him for at least a second opinion if at all possible. He's at the Mayo Clinic in Jacksonville Florida. Good luck to you - hope for a successful outcome.
tom86211 MichaelVM7
Posted
Michael,
A tough decision. Your urologist won't do a RRP without a positive indication of cancer. The HoLEP is a good idea - really takes the prostate down and sends tissue samples to the lab. So, then, if there are cancer cells your next move would be to have radiation. Doing a "saturation" biopsy could cause a lot of bleeding and problems. If it were my prostate I wouldn't do it. I already had two 12 core biopsies, and the second one caused a lot of bleeding for a long time.
So, lets say you go for the HoLEP and no cancer is found. Now, you have taken down your prostate size and this might solve a lot of your issues. I would definitely get not only a second but a third opinion from top urologists. I consulted with several doctors before deciding to move forward with treatment for my prostate cancer. You really need some good advice from the best.
Tom
MichaelVM7 tom86211
Posted
Thank you, Tom
I had a 16-core MRI-guided biopsy in 2015. I still have not recovered.
That was after my first MRI that showed a lesion with PIRADS = 3. Four cores in the lesion showed no cancer and no pre-cancer cells. Each MRI since that time (three of them) have not seen any lesions at all to assign a PIRADS score.
After my first biopsy, I peed nothing but blood and clots for the first day, and had clots pass for a week and streaks of blood for 21 days.
Nearly 4 years later, I still have occasions where my semen is rust-tinged - an indication of old blood.
I do not ejaculate often as my wife and I haven't had intimacy in many years. I try to "flush out" my prostate every 2-3 months, sometimes I go 6 months, just to get that stuff out. That could be why it's never cleared up after the biopsy.
My anus burns often. Biopsy needles can cause infection.
If he does a saturation biopsy - 24 or more cores - my 150 cc prostate will swell even more. He says I could need a Foley catheter after the biopsy. And then, you can't even have a procedure - be it HoLEP or simple prostatectomy - until the swelling resolves........ and that could take months.
I also have to weigh quality of life now vs. potential cancer in the future.
For the last month, I've averaged 3 hours of interrupted sleep a night. I'm exhausted every day.
My urologist is highly regarded and widely known. It will be hard to find a 2nd or 3rd opinion to counter his, and every urologist I go to who reads the literature will know my current doctor.
I think, though, with reputable doctors, patients have a tendency to place them on pedestals. I do believe I did just that.
I keep praying, asking God for direction. It is a difficult decision.
Michael
derek76 MichaelVM7
Posted
I had two biopsies in the mid 90's and refused any more. I had an infection after the first one plus the old blood for quite a while. After the second one I was just about to leave the hospital when I started to pour blood from my rectum and was kept over night. During the night another Uro passing through the ward asked why I was there. He said in Norway they call biopsies PSA terrorism. Again I got a later infection.
barney34567 MichaelVM7
Posted
I agree with the sentiments in here recommending you get another urological opinion.
The fact that the PSA is falling is good news.
You mention the 3T MRI had no comments on PIRADS. Was the radiologist involved a specialist in prostate images? If not, then find someone who is and take to him/her your images. Don't do another MRI just yet.
I would not rush to another biopsy or any invasive treatment at this time.
Also I would not focus on tests that show you may have PCa in 5, 10 or 20 years. You can only wisely act on evidence before you and not on what MAY happen.
Don't forget not all PCa kill. Also many take many years to develop into something nasty.
MichaelVM7 barney34567
Posted
Barney,
The hospital I went to is one of the best in the Midwest and ranked in the top 15 consistently for both urology and overall hospitals nationally.
The hospital treats many prostate cancer cases annually, and does more radical prostatectomies than any hospital in my State.
That said, I don't know the skill level/experience level of the radiologists who read my three reports. However, given the reputation of the hospital, I would think it would draw from a pool of top radiologists.
The 4K looks at risk of aggressive cancer and metastasis over a 20-year period. My results from last year showed only a 3% of having metastatic disease.
Yes, most PCa is indolent, and only a small percentage is Gleason 8, 9 or 10. It's kind of like tornadoes: most tornadoes are EF1 to EF3. There are a few EF4s and EF5s are rarer still - but these are the most devastating.
Thanks,
Michael
barney34567 MichaelVM7
Posted
Do not focus on the reputation of the hospital, but the reputation of the urologist.
Once you find a urologist you're happy with, he would refer you to or should refer you to an imaging facility whose radiologists he trusts.
Alternatively after you find the names of the radiologists at that facility or in the hospitaI you can google them and establish their areas of specialisation.
emil54651 MichaelVM7
Posted
In March 2017 I was 64, after UR, ER and catheter my PSA was 11. Uro recommended biopsy, I declined, he did the 4K test which showed high cancer risk and again suggested biopsy. Meanwhile I took a 3T MRI and it did not show any suspicion of lesion so I declined again biopsy. In October 2017 I had the procedure done and the uro had the tissue tested and it was ok. I was lucky. Eeach individual may take their own decision.
barney34567 emil54651
Posted
Yes you were lucky. Good for you. If 3T MRI is negative I would not rush to a biospy either.
joe34587 barney34567
Posted
Michael suggest you send your 3T mri to Dr Karamanian in Houston. He is an expert interventional radiologist who only works on prostates... nothing else. He treats prostate cancer and bph. Would think he would read the mri and consult with you. My initial consult was free...
Good luck.
Joe
MichaelVM7 joe34587
Posted
Thanks Joe,
I've spoken with Dr. K before. I will reach out to him again.
My last two MRIs were without gadolinium contrast, but from all I've read that only minimally impacts the quality of the imaging & ability to diagnose.
If my doctor presses the biopsy, I will ask for another MRI to see if there are lesions to address.
Four years later I'm not fully recovered from my first biopsy (done at a different urologist's office). I still have burning in my perineum. Probably chronic infection.
Biopsies have potentially bad side effects.
Michael
MichaelVM7 barney34567
Posted
Barney,
I wish I had not rushed into my first biopsy. Terrible experience.
That was a different urologist, but my prostate was around 80-90 cc then. Today it's more like 150 cc.
I had 16 cores taken then. I think my doctor is considering 24 cores.
Yes, I have had three 3T MRIs over a period of around 27 months or so, and each was negative, i.e., the radiologists who read the reports saw no lesions, only BPH nodules and inflammation.
My phi (prostate health index) scores have bounced around, and it is high now. I will ask to repeat my 4Kscore test before even considering biopsy further.
Michael
MichaelVM7 emil54651
Posted
Emil,
That's interesting that your 4K was high but you had a negative MRI and negative biopsy.
Good for you! 😃
Michael
derek76 MichaelVM7
Posted
Large prostate equals high PSA and yours is really big.
MichaelVM7 derek76
Posted
Right, Derek.
My PSA density is around 0.035, which is pretty low.
A friend of mine who just had robotic prostatectomy for a large Gleason 8 tumor had a PSA density of around 0.23.
Michael
derek76 MichaelVM7
Posted
We seldom hear of PSA density in the UK.
MichaelVM7 derek76
Posted
Derek,
That's interesting. Do you consider % free PSA in the UK?
derek76 MichaelVM7
Posted
I've never had the free PSA test from the NHS. I had to pay for it myself and I had to tell my then GP how to interpret it. Now that was some time ago so it may have changed at hospitals but the last two my GP did in the past four years were the standard one.
barney34567 MichaelVM7
Posted
If you must a biopsy, make sure you decide who you want to operate on you down the track if you need surgery and choose that doctor to perform the biopsy.
barney34567 MichaelVM7
Posted
Sounds like a good plan.
barney34567 derek76
Posted
Or in Australia.
barney34567 derek76
Posted
Make sure you go back to the same pathology company to test for PSA as different labs have different ways of measuring.