48 yrs old. PSA Blood test from a physical came back with a reading of 100. Biopsy results came back with 2 Gleason 4+4's and the rest 4+3's earlier this week. Appointment with urologist Monday to discuss these results. I'm feeling overwhelmed and scared. What is the next step for me? Also does anyone have in Dr. recommendations for around Knoxville,TN?Thanks so much for your help.
New Here. Overwhelmed.: 48 yrs old. PSA... - Advanced Prostate...
New Here. Overwhelmed.
Written by
hiker75
To view profiles and participate in discussions please or .
Read more about...
53 Replies
•
You made the best decision so far by joining this warrior cast. You will get fantastic advice from very experienced warriors.
You could look up Dr David Morris MD... he's an Urologist around the Nashville area which I understand is only about 2 hours away. One of the podcasts I listened often presents cases of Dr Morris. He sounds like he knows his stuff.
The Mouse's Ear is what first comes to mind when I see Knoxville, TN.
Ha. Seen the sign never stopped there!
Funny, I remember that place. I never went in but I remember exactly where it was
That is called "high risk" prostate cancer, which is still readily curable.
(1) Get a second opinion on your biopsy slides from Epstein's lab at Johns Hopkins:
pathology.jhu.edu/patient-c...
(2) Get a PSMA PET/CT to eliminate the possibility of distant metastases
(3) I think the closest major cancer center is Vanderbilt in Nashville. The kind of therapy with the greatest odds of success is called "brachy boost therapy." But you will have to find a practitioner of brachytherapy, preferably high dose rate brachytherapy. THis will be combined with external beam therapy and a year of hormone therapy.
(4) Do not make any decisions for at least a month. If you do, it will probably not be the same decision you may reach later as your emotional turmoil abates.
Isn’t Epstein suspended?
Schwah
His lab is still operating and is still the best.
Thank you for the reply. Im going to ask for psma pet scan tomorrow. Can I ask what it the reason to get a second opinion on the biopsy?
A biopsy reading includes a pathologist's (or maybe AI's) opinion and interpretation of the slides. Another lab may see something different and/or grade differently.
A second opinion also may agree closely with the first providing confidence on the diagnosis.
In my case I had 3 labs read my slides. All agreed, with minor differences, making me feel better about my choice of treatment.
Gleason grading is difficult. Most pathology labs require their pathologists to evaluate hundreds of tissue types. Epstein's lab specializes in genitourinary cancers only and are known worldwide for the quality of their work. There isn't a doctor anywhere in the world who won't accept their Gleason score.
It matters because Gleason 8 is high risk while Gleason 7 is intermediate risk. Those risk strata have been found to respond to different therapies.
TA, when you say “external beam therapy”, do you mean focused radiation (ie, only prostate)? Or whole prostate bed or pelvis? I’d imagine SEs are minimal w focused radiation. But perhaps moot with brachytherapy if that radiation gets to nerve bundles anyway? My apologies if an ignorant question. Thank you.
It's a very good question about how wide to treat, based on risk of pelvic lymph node invasion. The POP-RT trial used the Roach formula to gauge risk:
Certainly agree a PSMA scan is in order, but "eliminate the possibility of distant metastases" is not completely accurate. The absence of visible tumors on a scan does not rule out the possibility that tumors exist outside the prostate that are just too small to appear on the scan images.
There is always a possibility that micromets are there. But high-risk PCa is treated as localized PCa if distant mets are not seen on a PSMA PET scan.
Welcome to the fight brother. I was 45 at diagnosis a year ago. First step is ADT, and after that what your oncologist recommends. Don’t fear ADT, it’s for the best. Also get to the gym and start eating healthy if you don’t already.
After this I recommend a DNA test. A BRCA 1/2 or ATM mutation will determine future treatment directions.
Sorry to sound dumb. A DNA test on me or the cancer?
DNA test on yourself (germline) and your tumor (somatic). That is very important to do.
If you’re positive for one of these germline mutations it will open treatments such as a PARP inhibitor to you. It’ll also let the care team know how aggressive the cancer might be. It is scary, it was for me. But knowledge is half the battle. The other half is a ton of meds, gym time, and living our best life.
you should search this site for very informative past posts. You will gain a ton of knowledge that way.
in addition to this site, we have found reading NCCN guidelines and discussions on UroToday very helpful.
Thank you for the information.
My husband had surgery at Vanderbilt a year ago with Dr. Amy Luckenbaugh. She is really good.
Lots of good suggestions here. My husband was diagnosed in 2017 at age 49. Just wanted to emphasize to go to an oncologist that specializes in prostate cancer. Your urologist isn't a specialist in cancer. We found it helpful to talk to a radiation oncologist, surgical oncologist as well as a medical oncologist who all specialize in Pca. We went to 3 different centers of excellence- We live in the Philadelphia area- before making our decision on who we wanted to go to. You can click on my profile to see details of his treatment. And no matter who you see locally do what Tall Allen suggested and send your results to John's Hopkins. You can see a more local oncology team but still consult with an oncologist like the ones at John's Hopkins. You've definitely come to the right forum for quality sincere advice!
Hi pakb, which medical facility do you get treated at? I'm at Einstein Montgomery. So far I've been very happy with the DRs. I do consult with a researcher at MSKNY once a year because of a somatic ATM mutation. I'm similar age as your husband...I'll turn 58 in February.
Merry Christmas 🎄🎁 🎄 🎁
He's at Foxchase. We consulted with Penn and Jefferson at the time if diagnosis. All three said they actually all talk regularly amongst the hospitals and all had the same treatment suggestions. We felt pretty comfortable with all three. Our neighbor is in the medical field in Philly and got us the appts quickly to get a consult which we felt fortunate for. It's great that you've connected with MSK researcher. I was at MSK often with my sister-in-law. She had stage 4 appendix cancer. Merry Christmas to you as well!
That's is often overlooked..the intra communication among the practitioners. I chose Einstein Montgomery since it was only 2 miles from house and it has all the latest gadgets. My urologist has since moved to Foxchase after the Jefferson\Einstein merger.Anyway... wishing your husband continued success with treatment.
To you as well.
When you go to talk to these different people. Do you just book an appointment and ask for a consult? Do you have to bring copies of all your records? Sorry just never done this before.
Make certain you also engage with a medical oncologist in addition to a urologist….do this right away. It would be best if both docs are in the same medical system so they can collaborate easily and willingly.
Eliminate your fear with information. Nobody can tell you what's going to happen although you'll hear your life expectancy is 3 to 5 years. Don't take that too seriously because many men live a lot longer than that.
Stage 4 prostate cancer is not curable by anything that's safe for everybody but there are many excellent treatments. (Tall Allen says "curable" and he's more informed than I am so believe him.)
Fear never helped anyone or cured anything so absorb the info you get and make the best decision you can to prolong your life. Look forward, not back, and understand that today is all you really have.
Ask questions here but don't succumb to pity.
Welcome. As with any site about any issue, health, politics, finance etc., one of the first decisions one must make is which comments or advice one should filter for later, which to ignore and which to research first. Comments are of unequal quality and importance to YOUR situation. Tall Allen gives outstanding advice and has a website with many evidence based posts. That is a "now" file for you. Those who say nutraceuticals, diet, over the counter or other suspicious remedies should help to resolve your immediate condition are in the ignore category. That leaves a large number to still resolve for your personal filing system.
Follow the same pattern you use for those other kinds of sites. Read and remember posts of most relevant and scientific significance to YOUR situation, delete those which common sense and intelligence say are dead ends, and then further research if one has time.
Hey brother- I was diagnosed at 46, Gleason 10. I’m still here 7 years later.
My 2c - pace yourself this is a marathon not a sprint; get second and third opinions; be an advocate for yourself- if what the Dr says doesn’t sit right- get another opinion; be willing to travel to find the best support/team; finally: exercise, good diet and feed your soul.
~ Chugach
Make sure you visit the proton center. equal results and you don't loose your manhood
Obviously the bad news is you are very young to have such advanced prostate cancer. The good news is you have a diagnosis before having symptoms (other than rising PSA), and you have possibly curative type options available.
When I was diagnosed at 54 with Gleason 7, I decided to use every tool available and ensure I always have a Plan B in case Plan A isn't effective enough. As you can see from my bio, I've needed to use many different treatments. Having world class medical specialists has helped me minimize side effects and maximize effectiveness of treatments.
Everyone who gives you advice will have their own personal biases regarding treatment options, which is why it is so important for you to quickly become an expert yourself. I won't bore you with my personal biases on treatment options, but I do encourage you to 1) optimize your overall mind and body health with consistent exercise and healthy diet and 2) add to your medical team a medical oncologist who has had more than a hundred prostate cancer patients.
Here is a good website for beginners who may have a long journey ahead: cancer.net/cancer-types/pro...
I'm happy to share any of my experiences if you message me privately.
Good luck.
Thank you for the advice.
Sorry to see this. Agree with getting a second opinion at Hopkins. They are the recognized national experts. I would then get a 3T MRI of the prostate t determine if the tumor is within the capsule and show the extent of glandular involvement.
Consider going to a center that is expert in PCa. On the east coast that would be Hopkins, NIH (Dr. Pinto), Memorial Sloan Kettering. MD Anderson in Houston and Mayo Clinic in MN are also ones to consider. Talk to at least 2 of them and get their opinions. Give them copies of you biopsy reports as well as MRI report.
There is some time. You should be able to get your consults completed within 4-6 weeks.
Wish you all the best. Feel free to reach out if you need more assistance!
there is a genetic testing company called Color. I think they were doing free tests because they decided they needed more genetic samples so offered their tests free
Think long and hard before agreeing to prostatectomy. Consult an oncologist. Preferably at a teaching hospital.
Thanks for the information. I will do that.
Here is my 'woulda-coulda-shoulda' list of what went wrong with my PCa (prostate cancer) and what I would do differently in my next life...you are a LOT younger so your sexual health is important; YOU MUST watch out for this. It wont be on the radar for most of your Doctors; they are interested in saving your life...you can have both a good outcome and sexual health (not as born but better than if left to chance). Good luck...use what you can from my laundry list...Rick
PCRI videos on youtube have amazing amounts of information. You are exactly where I was 5 years ago but I was 55 with same Gleasons etc. take your time and make sure you understand all the side effects before making any decisions.
Not what you're looking for?
You may also like...
New here. My story.
and lower back). I say “believed” because the metastasis has not been confirmed. My Gleason...
New Here not New to Prostate Cancer
numerous Doctors examinations, just a rising PSA on a blood test back in 2007.
I have done...
I'm new here, unfortunately. :)
that my Gleason scores were all 9's; there was cancer in all 12 biopsy sites at 80 - 100%. PSA was...
New here and to this disease
A 2nd blood test in late Oct confirmed my PSA suddenly rose to 17. This was first time it exceeded 1
Devastated - new here - needing information -
the next 30 years. He had the surgery and for 15 years all of the follow up psa tests came back...
I'm new here. Introducing myself.
I'm new here...short intro
New here, glad to find this group
New here
