46 years old, married, no kids. Saw my urologist last week. I have a Gleason score of 6 (3+3) (Grade Group 1) with the cancer in one core (out of 12) and 21% of the core. What are my next steps? My instinct is to get surgery immediately but I really want kids but do not have any kids yet. My urologist mentioned surgery will eliminate the ability to have kids naturally. The option left will be to extract sperm from the testicles which I imagine is difficult and challenging to have success.
My urologist ordered genetic testing on the sample. What other tests should I take at this point? I asked for a prostate MRI but my urologist said I need to wait until the prostate heals from the biopsy.
I plan to get a second opinion on the pathology slides from Johns Hopkins. How do I ensure that Dr. Epstein personally reviews my slides instead of one of this fellows?
It has been 3 weeks since my TRUS biopsy (through the rectum). My urine still has significant blood in it and semen is truly awful; looks like pure blood. Should I be concerned?
I am extremely stressed out and depressed from this nightmare which I wish I could wake up from. Your advice will be much appreciated.
ETA: Where do you recommend I go to for a second opinion? Who are good urologist/medical oncologist options? I am in the US living in the DC area.
ETA2: I got a second opinion from John's Hopkins. Here's an excerpt from the pathology results. Hopefullly, the pathologist that read my slides was trained by Dr. Epstein. Is it normal for pathology labs to send just 2 slides instead off of all the slides from all the cores? What do you advise my next steps should be?
SURGICAL PATHOLOGY: CONSULT - Details
Pathologist: Tamara Levin Lotan, MD
Specimen: Prostate:Needle Core Biopsy
UROLOGIC PATHOLOGY CONSULTATION SERVICE
1. Prostate (Needle Core Biopsy):
F. Prostate tissue with small focus of atypical glands, highly suspicious for low-grade carcinoma. See note.
NOTE: Although these findings are highly atypical and suspicious for adenocarcinoma, there is insufficient cytologic and/or architectural atypia to establish a definitive diagnosis. Followup is warranted with serum or urine tests and imaging, and in some cases, repeat biopsy with relative increased sampling of the atypical site may be recommended.
Stains for high molecular weight cytokeratin and p63 are positive in a patchy fashion in some of the glands.
This case was reviewed at the Genitourinary Pathology Quality Assurance conference.
Received 2 slides (F1-H&E, stain).
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Hold on there. Chill out. Relax.First, a 3 +3=6, especially with only one positive core, with a small amount of cancer at that, is not a reason to panic.
The very worst choice you could make is to rush to treatment, especially by removal. Only a fool rushes to treatment without exploring and assesing options.
Educate yourself first. There is no rush. Take months if you need to.
Never act on fear alone. NEVER.
Perhaps the very best choice is
A S, Active Surveillance. Talk to a medical onvologist, a radiologist, as well as a urologist before deciding anything. Ask each about A S as well as their treatment ideas.
Sorry you've joined the club, but rest assured, you have a lot of time, and you have low-grade cancer, and should not have surgery or do anything right now. Active Surveillance is now the standard for someone with your numbers. You monitor the cancer, regular PSA tests, follow up biopsies over the months and years. You may never see your cancer advance, and will certainly have time to have kids.
There are a lot of us here and we're doing fine. Read my bio and see my treatment--I was favorable intermediate (3+4=7) and, in my case, AS would not have been a good strategy for long. So I had LDR brachytherapy, a one-and-done radiation treatment. Surgery is not only not necessary now for you, but it is not something you must do at any time. Radiation and surgery have EQUAL outcomes, per long-term studies. But the short-term side effects of surgery are greater and the long-term side effects can be as well.
Urologists are surgeons --- they like surgery. Make sure to see other doctors and make sure you speak with radiation oncologists. Again, that's down the road. You have a lot of time. Others will weigh in here I'm sure and agree that right now AS is the way you should go.
Regarding the biopsy and blood, have you spoken with your urologist about this? Blood is normal for a few days in urine, but could last longer. It is present for 6 to 8 weeks in semen often. Make sure to tell the urologist.
Thank you for your comments. It is very reassuring. I am concerned about the risk of starting with radiation therapy which preclude future surgery as a treatment option.
I will try to get my urologist on the phone next week to talk about the blood in urine.
Sigh.. I see the urologist gave you the "no surgery after radiation" talk. He's (1) wrong (2) speaking from self-interest. It sounds like your urologist thinks he's found another cash-cow to milk with probably unneeded surgery. Find a good medical oncologist and LISTEN to him. So far your urologist has injured you with the biopsy (you see the evidence of that every time you pee..)
Read again what I wrote above - you want the "A team" working with you, not the local guys.. It might mean some travel on your part - if you tell us where you're located - if it's in the US - you're certain to get some advice on where to go.
John Hopkins in Baltimore is one of the top hospitals for prostate cancer. The doctors that graduate or do residence in Hopkins are highly sought by other cancer centers seeking to improve their reputation and standings.
There are a lot of myths about that. Radiation doesn't preclude other treatments if there is a recurrence -- including other radiation therapy treatments (of which there are several different options). There's also cryotherapy and hormone therapy. And surgery is still an option, per link below, but I personally wouldn't go that route.
Ask Tall_Allen here about it before making any decisions. He is a wealth of information (and cuts through the distortions and misinformation) as a patient advocate.
Never rush into making an important decision in a crisis. I know you are scared. That much blood in your urine is concerning you might need a cystoscopy to see what is going on in your bladder. If the cancer has spread beyond the prostate surgery may not be an option.
@Magnus1964 - my only comment on your suggestion is that he find a different urologist.
And if a cystoscopy is needed - find one who does it without general anesthesia.
My local doctors (I'm resisting call them clowns, but it's difficult) wouldn't consider doing it without anesthesia. Since then I've had a cystoscopy twice (doing it every 6 months) and I had no anesthesia, just local pain killer (lidocaine) - and got to watch the whole thing on the monitor and discuss real time what was seen. That was done at Columbia/Presbyterian in NY - I drove myself there and back - no anesthesia....
Color me cynical - there just might be some financial incentive for this I think. These are done at one of the local "outpatient" surgery centers. These centers are very much for profit and typically owned by a consortium of MDs. The pitch they give for them is you're not exposed to the riff-raff and the diseases they might be carrying (if you did it in hospital.)
Apparently it's frowned upon to send a patient to the one you own a share of - but not to one that a friend of yours (who might be an MD sending his patients to yours) owns a share of. You now add in the significant cost of anesthesia - and you start to see the money wheel spinning and tossing off Benjamin's.
This was explained to me by my GP - who doesn't own a share in a surgery center.. he seems to be a bit cynical too.. go figure. Healthcare as a profit industry..
Finally, someone who thinks the way I do. A lot of people think that there are those of us who choose to be doctors because they just want to help people get better. Bunk! They're in it to make money and so are the medical institutions like hospitals and clinics. Because of all the medical issues I've had over the past 10 years and all the doctors and facilities I've been to, I have figured out this game. Anyway, I think at most, this guy should do a short lived dose of Lupron and some IMRT radiation to save both his sperm and his sex life.
You sound like the poster child for active surveillance. You do not need any kind of treatment. Within a year, you should have a confirmatory mpMRI and biopsy.
The blood is expected. The biopsy breaks some blood vessels, which take some time to heal. It looks a lot worse than it is. Don't take aspirin or any blood thinners, of course, and masturbate frquently to get rid of the excess blod.
Many thanks for your very helpful response. I am looking to get a second opinion the pathology by sending my slides to Johns Hopkins. Athough, unfortunately, Dr. Epstein is on leave. So I am no longer sure where to send my slides.
I was also going to see an Urologist at Johns Hopkins for a second opinion. But from comments on this thread, Memorial Sloan Kettering Cancer Center, which is a few hours away from me, is a better option.
I will try to not to get stressed out about the bleeding. I was hoping it will be gone since it is over 3 weeks since my biopsy.
I'll go ahead and request my slides to be sent to Johns Hopkins. Thank you.
Here's the text of the report I received from the Oncotype DX GPS genomic prostate score report. What are my next options? Your advice will be much appreciated.
"Unable to report due to insufficient carcinoma present. Review of the H&E slides generated from the submitted block or unstained sections indicated insufficient carcinoma.
Please review this case and consider submitting a different specimen that contains the longest linear length of the highest-grade tumor. "
When you say "on the fence" are you refering to cases where active surveillance is no the clear choice? Thank you.
Does Gleason score of 6 (3+3) confirm there is no spread outside the prostate? I think that just having the TRUS biopsy results does not provide enough information hence my worry. I was hoping for more information from the genetic test.
"on the fence" means something like >15% pattern 4 or high volume pattern 3. You are not on the fence. You are the poster child for active surveillance.
Gleason score does not tell if there is spread outside the prostate. That is given by a different metric called stage. (Gleason score, stage, and PSA are the risk factors that determine your risk category - you are "Very Low Risk") You are probably stage 1c, which means nothing was felt in the prostate. When you have your confirmatory mpMRI in about a year, they will also use that to confirm your stage.
In the meantime, there is nothing to be done other than enjoy your life. If you're like most guys with a similar diagnosis, this will never require treatment.
Hi , I was diagnosed back in December 2021. 3+3.. Best advice I got was to take it slow and obtain other opinions . I went on AS.. I have completely changed my diet , Vegan and fish , exercise and intermittent fasting . I dropped 14kg and last PSA dropped and recent MRI showed no sign of lesions. I’m still on AS. I hope this helps
All I can offer is to make sure you talk to a radiation specialist urologist before you decide on your treatment. I had my RP 5 years ago and I’ve been cancer free ever since, but I do have ED and mild incontinence which affects QOL on a daily basis. Good luck , you’ll be ok.
Thank you for your comments. I will do more research looking at all the treatment options. I am concerned about the risk of starting with radiation therapy which precludes future surgery as a treatment option.
I concur with the observation of NYTalker, as well as your plan to see an oncologist. As sorry as I am that you’ve joined the club, I’m happy for your low status on the totem pole. You have time and many options to explore.
First, know that like you, we all probably had the same reaction, and freak out, and anxiety, and WHAT TO DO moment, along with Get It Out of Me like it was the creature from Alien (movie) inside of us...
Keep a few things in mind and hopefully these little tidbits will help calm the seas!
Prostate Cancer is one of the slowest progressing cancers. Generally, the 10yr survival Statistics are almost 100% (98%) of Patients, and the 15yr survival numbers are far off of that, except for a small group of Patients. Prostate Cancer today, is more treated akin to a chronic condition than one with immediate end results (see statistics above). So yes, you've been diagnosed with the lowest, least risk associated cell type of PCa (prostate cancer) that a patient can have. As a matter of fact, there is movement in some circles (oncologists) to remove Gleason 6 scoring from being diagnosed as Cancer at all. Why? Because there's no recorded deaths from Gleason 6 patients. Read that again...
Don't get me wrong, this is what has been found today, in some years forward, low lying slow growing PCa cells might reveal themselves and your diagnosis change. But taking out the Prostate doesn't necessarily mean a cure either, so don't jump to conclusions...
Biggest thing to remember is to breathe! To take time, stop the machine, forget about what's preoccupying your mind and breathe! Do NOT let it consume your thoughts, your time, the things you do.
Question will be, ok, how do I mitigate this, how do I best address it so that I have the best chance going forward? Well, that one, should be an easy one to answer. Your diagnosis was through an Urologists? Or oncologist? If not an oncologist, I highly suggest you get yourself to a Major Cancer Center and one rated in Excellence! It is there that you'll have access to the very best in diagnosis, treatment, and care. Don't skimp, travel if you must, but it is at these COE's where the best outcomes and Patient satisfaction is achieved. In the U.S. these are the top 5:
BEST CANCER HOSPITALS
#1
University of Texas MD Anderson Cancer Center
#2
Memorial Sloan Kettering Cancer Center
#3
Mayo Clinic
#4
Dana-Farber Brigham Cancer Center
#5
UCLA Medical Center
Any one will do...
Remember, breathe! There is time, and there's time to get a 2nd or 3rd or how many consults or opinions you need in order to make a decision on what treatment if at all, is necessary. It's not the doctors who decide, you do, it's your body, your choice, your decision. So making it in haste, isn't such a good idea. Again, there's time, even months, years, until a threshold is reached where some form of therapy would be an absolute need. Of course I'm not a doctor, just sharing experience and what I've been exposed to along my journey. But meet with surgeons, radiation oncologist, an oncologist who specializes in Active Surveillance... Explore your options, take notes, ask questions, ask again if you don't understand, ask until you do! Take someone with you, because you'll both hear different things when in discussion with your team. And when you think you've made a decision, run through all the information a few times more!
Again, Gleason 6 (cell type 3) is not invasive, it does not spread beyond the prostate. PCa itself is one of the slowest progressing cancers which affords it's patients time to explore the options available.
I am so grateful for your detailed and thoughtful response. Memorial Sloan Kettering Cancer Center is a few hours away so I'll consider going there for a second opinion. I was going to go to Johns Hopkins but it sounds like Memorial Sloan Kettering Cancer Center is a better option? How difficult is it to get an appointment when I am coming with a referral from my urologist?
To answer you other question, I was diagnosed by a urologist who I now understand will be biased towards surgery as a treatment option.
MSK might be "better" if you want a "team" treatment of your disease. I tried the MSK route and left. They refuse to accept anyone elses results for tests - so they redid tests I'd already had. I assume they've found enough differences in their results and other organizations results that this is enough to create this policy.
What I had an issue with was the scheduling of visits and tests. My first visit with a doctor at MSK was 3.5 hours late. I was his last patient of the day and they'd obviously overbooked him (oncologist). I was then supposed to meet with a surgeon and a radiation oncologist - these appointments were made 1 and 2 months out from my initial meeting with the oncologist. For a G6 or G7 that might seem fine.. I was G9 (later G10) at that point and waiting 2 months to even discuss treatment wasn't fine at all.
I meanwhile had my original diagnosing urologist start me on ADT - because I felt something had to be done before things started progressing (the tumor was contained in the prostate). The oncologist at MSK was very upset about that because it disqualified me from getting into a clinical trial he wanted to put me in. I got the feeling the reason he wanted me in the trial was he was bringing a G9 to the trial, and one who hadn't metastasized yet. I got a very strong impression he wanted his name on the trial and I was his path to achieving that goal.
YMMV - I'm sure other people have had wonderful experiences at MSK and they are a speciality "cancer" hospital. But if John Hopkins is accessible for you - that's where I'd be going.
Nvidia-ati. Dr. Epstein is on indefinite leave. His office manager or nurse will tell you that it's not known when or if he's coming back. Bad news for everyone. I learned this from his office, but the news can be found online as well.
Many thanks for the heads up. I called Dr. Epstiein office and confirmed he is out on indefinite leave. This is most unfortunate. Where should I go now for a second opinion on the pathology?
JH's pathology department has 3 other specialists who have been trained by Dr. Epstein. I would still send the pathology to JH. (Drs. Andres Matoso, Tamara Lotan, and Ezra Baraban)
My first thought on this is that you consult a sperm donor bank to see what options you have to save and store up sperm then get to work before you make your decision on your treatment options. I can’t imagine it taking to long to work out several batches to preserve. Anything beyond that seems a more complicated route.
You can do active surveillance and preserve fertility. Additional cryopreservation of sperm had been done for decades and should be available through virtually all university centers. Your urologist should have put that way ahead of testicular sperm extraction. If you elect treatment see a fertility expert prior to review options. A DNA test to exclude things like BRCA2 that would warrant treatment is reasonable. It is a simple saliva test that is free in Promise study. Also genetic changes are often dominant genes which would be helpful to know and how that would affect offspring
I was told when my DNA went to invitae if insurance didn’t cover it [it did) to get the cash price from company as it is much lower than price to insurance. Good luck
i had 3+3 with 1% of 1 core back in 2013 at age 53.
After 1 yr passive surveillance (active waiting) i think it was called, then 1 yr active surveillance which gave me plenty of time to research. I did a bunch of standard tests, and found nothing unusual except my T was 230. I had to buy tests outside of medical system (genova diagnostics) and i had found homozygous FGFR4 which is a very poor prognosis, two uncles died of PCa so i decided to have my prostate taken out. Some say that was not necessary but the doctors were shocked that my cancer had already escaped in two places plus perinueral invasion. fast forward to rising psa post RP then radiation then bio recurrence and bamb! lifetime ADT
So what is your PSA, mine was 3.6 till i went on testosterone patch to bring up my T of 230 which in 30 days PSA jumped to 5.6. Do you have any family history?
Age 46 is early to get PC so i love the idea from above to get a germline genetics test.
You can read my posts on why i think I got PCa beside the FGFR4 mutation I focused on unmetabolized estrogens. Ercole Calieri and Eleanor Rogan have 127 papers on unmetabolized estrogens and hormone cancers.
You have plenty of time and you made the most important step in joining this group.
My PSA is 3.0. Does Gleason score of 6 (3+3) confirm there is no spread outside the prostate? I think that just having the TRUS biopsy results does not provide enough information. My oncotype genetic test was inconclusive because of insufficient carcinoma tissue.
why did they do a biopsy with only 3.0 PSA? 3+3 does not mean it hasn’t spread outside prostate. Im a living example. You still can have perineural invasion like i did. My PSA was 3.8 then i went on adrogel for 30 days and PSA jumped to 5.6. Im not a fan of sticking a biopsy needle into gland 12 times and poking the beast then pulling it out through the prostate gland. never mind every year on active surveillance. Just think about you peeing all that blood where does that blood come from?
No, the Gleason score ranks a type of tissue. Grades 1-5, but less than 3 is not used. The first number represents the predominant tissue type present, the 2nd number showing what is also present but in a lesser degree. Ultimately Gleason tissue type 3 is not invasive as noted, but type 4 and 5 definitely are. The percentage and amount of tissue identified in core samples from biopsies, especially targeted (MRI) help determine volume of disease as well, but this may be misleading because the biopsy needles sample such a small portion of tissue.
Ultimately it's a combination of all the available tests, imaging, and such which allow as accurate a diagnosis as possible. It's not a good idea to rely upon any "one" test to jump to conclusions.
All of the many different cancer treatments do NOT have the same curative effectiveness. This is a myth. And it doesn’t make sense if you step back and think for a minute.
Good that you found pcri.org.
Any guy on this site would love to have G(3+3). But it is still cancer don’t forget.
If you are going to read/hear about active surveilance, also study up on micro-mets.
Also Here is a good website to compare odds vs various treatments. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrance). You look like low risk, pull up the low risk chart and you can see odds of 10-20 yr survival, etc.
Note: it don’t look good on cell phone. Look at the charts on a computer or print them out.
Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than cancer.
Sorry to hear and welcome to the club none if us want to be in. I totally understand your stress as I was there myself but take a deep breath and remember this is a very slow moving disease. I have the exact same score as you do and I have been now on active surveillance since October 2020. Do not let your urologist her surgeon. Press you into a prostatectomy yet. It may never be needed as Gleason six does not act like true cancer. I have annual MRIs and nothing has changed since my original diagnosis. You're on the right path. The best thing you can do is get a second opinion from Epstein's team at Johns Hopkins and a genetic test. I would also recommend sending your MRI if you have not had one too Dr. Busch in Atlanta. He is the top image radiologist in the country. He read my MRI last year and had a 180° differing opinion from the oncology urology team at UCSF, and based on his report, they reversed their opinion. I would also recommend strongly checking out the Facebook group called non-surgical treatment and support. They have been a great support and a lifesaver basically for me helped guiding me through this incredibly difficult stressful path. We're now on. What I found is the importance of getting multiple multiple opinions because it's all they are is opinions. I am committed to doing everything but prostatectomy because I don't want to risk completely destroying urinary tract and reproductive functions. There are lots of alternatives out there, including Trus & HIFI, which, unfortunately can affect ejaculation. It does leave urinary function intact. The idea is the longer you can wait for treatment the more treatment methodologies, improve, and new ones come along. So just take a breath and realize most men die with prostate cancer not from it. By the way, what is your PSA and how old are you?
Many thanks for your comments. My PSA is 3.0 and 46 years old. I plan to send my slides to Hopkins although unfortunately, Dr. Epstien is on indefinte leave. My urologist said I cannot do and MRI for several months because of the swelling from the TRUS biopsy. I would like to do a follow up MRI Fusion biopsy when possible. I will see other specialists for second opinions as you have suggested.
I have had a burning sensation while peeing for a few years that appeared to stop. Then my PSA rose from 2.1 over the course of 14 months. This prompted the biopsy.
Good to hear. After talking to a urologist, a radiation oncologist and a medical oncologist - I'd suggest finding one more of each and getting second opinions. ALL of them.
Treatment for PCA used to be cut/burn/poison. Surgery/radiation/chemo-ADT (often a combination of several). That's no longer the case. I'd want the 2nd opinions to come from doctors at a major medical school hospital that has a specialty unit for cancer care and research. And there will be doctors there that ONLY specialize on PCA. That's who you want.
I've found I get better advice, better discussion of options, a wider knowledge of options and possible medical trials with the medical school doctors. They're teaching what they do - and they're typically very good at it, and aren't working on a by-the-patient-visit fee schedule (they're employed by the hospital/medical school.) They are much more likely to know exactly what is current practice and what's promising new practice.
As far as worrying if Epstein does the re-read of your biopsy samples - rest assured that he personally reviews ANYTHING that comes out of Hopkins with his name on it. And he does respond - quickly - to questions posed via email (from personal experience.) I had 3 reads of the same samples - one was a G9 (4+5) another was a G9 (5+4) and Epstein's G10 (5+5). My medical oncologist (a leading one with a very limited practice) immediately said - if Epstein says G10 - it's G10. There was no question on his part.
Meanwhile - relax a bit if you can. Your PCA has been rated G6 - that's a level that is under discussion to be moved out of a cancer category diagnosis. That diagnosis gives you time to make rational well researched decisions on what you're going to do about it. The current general thinking (as far as I've seen lately) is often to put a G6 patient on active surveillance - monitored frequently to make sure nothing is changing., On active-surveillance you can father children normally. You might also see about freezing and storing sperm (collected via self-stimulation) in case further treatment is needed in the future.
Good luck to you - I think you have to consider this a chronic condition, but certainly in your case not a fatal one. Best of luck with your treatment decision.
Thanks so much for your thoughtful response. I learnt that Dr. Epstein is on indefinite leave. I will still send my slides to Hopkins for a second read. And I will see other doctors for 2nd opinion on treatment options.
Does Gleason score of 6 (3+3) confirm there is no spread outside the prostate? I think that just having the TRUS biopsy results does not provide enough information regrading the best treatment option.
prostatitis can do this too, which is sometimes treated with a long course of antibiotics. i'm no physician, but have you tried that route? Or have a discussion with your doctor?
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New Guy in the Club--Considering Options
I've been thinking about my PCa and have some questions - would be glad for any thought or input
46M, diagnosed in April, approaching decision
Gleason 6, 1 Yr AS, now Gleason 3+4
Biopsy Question: Suspicious for focal intraductal carcinoma
