Good afternoon -- I'm a 59 year old who was diagnosed with Prostate Cancer earlier this year after increased PSA levels over the past year -- from a 4.5 (Feb 24) to 5.14 (Nov 24). Subsequent MRI and PSMA PET confirmed the cancer; but imaging indicated it was limited to the prostate. Biopsy results showed primarily 3+4 =7 but also a single 4+3=7; staged as pT1c.
After several consults with local / regional doctors -- all who recommended a radical prostatectomy due to my age, health, and expectation the cancer was confined to the prostate -- I pursued the prostatectomy.
The surgery was completed 2 weeks ago and I'm recovering well w/o any major complications ... incontinence and ED seems to be doing extremely well. That said, the pathology report is more concerning than anticipated given the earlier staging:
- Cribriform Glands (but no additional details provided)
- No involvement of lymph nodes (15 examined)
The recommended next steps: Monitor PSA levels at 3 month intervals; no intention for additional therapy (ADT, radiation, etc) at this time unless PSA levels are above 0.1
Is this a "reasonable" course of action? Ideally, I'd love to have the cancer eradicated ... but also don't want to experience side-effects of additional treatment unless warranted.
Thoughts and recommendations greatly appreciated as my wife and I navigate this journey...
Thanks!
Written by
VfB1893
To view profiles and participate in discussions please or .
I waited until my PSA reached 0.20 before getting salvage radiation. I wish I would have gotten it sooner when my PSA first began rising. If you view my bio, feel free to send me a Chat message.
Yet, it seems your wish may not be supported by data - ?
Per the data, it seems my SRT was done half right. I waited ten months - so not adjuvant. But, done uPSA 0.113 . 'Too soon' perhaps?
Thing is, my cancer was beyond the SRT prostate bed field - all the way to para-aortic lymph nodes. I have inquired as to whether my para-aortic nodes would have been treated by whole pelvic SRT. Always told no.
After my unsuccessful SRT I concluded for us men whose cancers do not behave according to the data, well, we are simply acceptable losses.
All the best to all of us fighting this heterogeneous beast with population/evidence based practices and guidelines.
The recommendation from your professionals is correct. You need to decide if you want to monitor your PSA with the standard test or the ultra-sensitive test. I have used the uPSA test since my surgery in 2018. You want to do lots of kegels now and probably start with your penile rehab. soon. I was only allowed to walk for exercise the first six weeks and I did a lot of walking; my dog loved her 3 mile daily walks. Good luck to you.
Penile rehab is a good recommendation I too often fail to mention. Perhaps this is because it was not mentioned to me nine years ago, and also, I recovered enough, naturally. But I do wonder....
you may well need follow-up radiation, but better to wait to see if there is a clear psa progression and let your body heal a bit before taking additional action.
Thoughts from just a guy that has been down this road with similar pathology. IMHO you should have good confidence your docs will present you common practices following population and evidence based guidelines. For example, it reads you will be getting your first PSA test in three months - pretty standard. (You have not indicated whether it is ultrasensitive.)
I chose the less common path to rely on PSA half-life calculations and had my first uPSA test at four weeks, based on my pre-RP PSA of 10.4. My post RP nadir was 0.051. We accepted cancer had spread beyond the gland. Note I did not have nearly as many lymph nodes removed as you did.
As I have learned the challenge is how far and fast will one's cancer spread. Sadly, there is no way to determine this. For many men after RP it does seem remaining cancer moves slowly.
I choose to not give my remaining cancer much time, twice, because I want to do all I can, if it comes to it, to defer ADT/CR for as many years as possible. Hope this helps. All the best for you and your wife!
I also had surgery to remove prostate, gleason score 9, but they didnt get clean margins, some cancer was left behind. But I was clueless, thought I was cured!
3 years later, knock knock, hello, Iam here and growing!
PSA went up to .17, PSMA scan did not show anything.
Did 6 weeks of radiation and 6 months of Lupron hormone therapy. Also embraced plant based diet, alternative treatments, exercise, but only after re-occurance, dumb me!
For 2 years I have had undetectable PSA, but assume it will be back.
If I had to do it over, after my surgery, I would of embraced alternative treatments, since the medical profession wants to just wait and see if you are one of the very few without clean margins who doesnt have a reoccurance, crazy in my opionion!
I would drastically change my diet to plant based ( which I have done after my reoccurance), I would take Fen Ben and Ivermectin with the suggested complimentary supplements, I would exercise like mad!
I would research, research, research!
Instead, since the Surgeon acted like my not clean margins was a " no big deal", I did not alter my life style at all, until I had the Bio-chemical reoccurance, Idiot me!!
Would any of the above stopped my re-occurance? Well, since I did nothing, I will never know, will I?
And the "experts" on here will go nuts over " Alternative" treatments being suggested, but if you do your own research, follow the liver protection suggested supplements, how could they hurt? My onocologists were ok with all life style changes / alternative treatments.
Or, you can just wait for the cancer to come back, which is what they had me do, and then go thru what I went through.
I wish I could have a " do-over", and I would definitely aggresively change my lifestyle and take supplements immediately after surgery without getting clean margins!
Might ask your urologist for a DECIPHER test. It helps to further determine how aggressive your disease is. In my case, it was fairly aggressive so we began treating earlier than later with radiation. Google DECIPHER post prostatectomy test.
Good day, you probably want to ask for some sort of genetic testing on your removed prostate (Decipher, Oncotype?) there are a few out there. These genetic tests can indicate aggression of cancer to assist guiding the medical team. Like others I recommend early salvage but don’t wait too long as Mr. Bucher said, especially if you find that you have more aggressive type. I am PT3A margin 5 years at <0.01 and this month pulled a 0.01 (no <) yes it is technically <.1 and even <.02/<0.05 etc. anyway best to you and for sharing your post.
Wow -- GREATLY appreciate all the insight and inputs!!!! I've clearly got a lot to learn and consider ... but am fully on board with being aggressive in tracking and early intervention. I wasn't familiar with the uPSA test and only briefly looked into DECIPHER -- but will definitely pursue. Similarly, agree with the need to improve lifestyle / eating / exercise / consider supplements ... 2 weeks out from the surgery, I can definitely feel the positive results from several months of core and kegel exercises prior to surgery. Thanks again for the assistance!!!
All being said, we are all just that bit different in diagnosis & treatment needs & treatment reception. I was 59, diagnosed Gleason 9, (no PSMA PET Scan available at that time, 2018) - all other scans showed contained, Scans did show a need to have a hernia repaired, opted for RP and Surgical Pathology: 3aPN1-clean margins, some perineural, 1/3 prostate involved, removed about 20 lymph nodes w/the 1 positive, went 3 years with PSA undetectable, no treatment (this was recommended by 2 outside consults), then a slight increase, PSMA PET Scan showed one spot in the pelvic area, went on ADT & Salvage Radiation - now PSA has been undetectable for almost 3 years - scans in November show no signs of cancer spread or growth - am on 3 month monitoring and have never looked back! For me it was the right decision. Tall Allen is right, no advantage shown in treating earlier. I've stayed active, adjusted diet prior to diagnosis while losing weight and continue to eat a healthy diet. ---- Don't be afraid to consult with another doctor. I consulted with a friend at the Cleveland Clinic and also with a doctor at a Regional Cancer Treatment Center. Be your own best advocate - ask questions - use common sense.
" I'd love to have the cancer eradicated ... but also don't want to experience side-effects of additional treatment unless warranted."
That wish is already chiseled (and very deep) on the wish wall...
Do you and us a favor, by gleaning pertinent information from your post (above) and place it in your bio. That info will come in handy and will be helpful to us members. Greeting BTW and keep on posting.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Another Old Codger just learning of this site
After Radical Prostatectomy PSA and Radition with/without Hormone Therapy
Low Testosterone and value of continuing Hormone Therapy
Oligometastatic PCa - My New Treatment Plan
Time between Radical Prostatectomy and Metastatis
