I am writing as spokesperson and chief researcher for my husband, Steve. He is 75 and was dx'ed w/prostate cancer on 11/27 by his urologist after some months following a bad UTI and subsequent catheterization to "rest his bladder" by initial NP (whom we saw upon referral but subsequently changed practices for many reasons.) He has been desperate to get off the Foley as Urodynamics tests were good but there is an obstruction by a lobe apparently, tho' NOT a so-called median lobe.
Anyways, he was given a random biopsy without MRI which I now understand to be somewhat sub-standard care these days??? (which does make me wonder about this practice, should I??) and cancer was found. The initial report by the pathologist who, I assume, reads all kinds of things so should possibly be taken w/skepticism said he had 1 core of 3+3, 5%of tissue; 2 of 3+4 20%oftissue, 1 with 3+4, grade group 3, 30% of tissue, and 1 core w/4+3, 10% of tissue, as well as chronic prostatitis throughout. The urologist said in his opinion, Steve could do A.S.
I immediately arranged a second opinion from a urologic oncologist at a better hospital system, tho' not a recognized Center of Excellence. Before I relay their interpretation of the biopsy, Dr. Sivaraman ordered a Pylarify PSMA PET scan and Decipher test.
Their report found in the right mid 3+4 in 2 cores, 15% is Gleason 4. Rt apex 2 of 2 cores, 3+4, 15% Gleason pattern 4. Says "Perineural invasion is present" which 1st report did not. Prostate left mid: 4+3, 1of 2 cores, 60% pattern 4. Chronic inflammation is present.
His Pylarify PET scan on 1/3 found " Diffuse, mild and heterogeneous radiotracer uptake throughout the prostate. NO DEFINITIVE FOCAL AREA TO CORRELATE WITH KNOWN DISEASE. 2.Prominent left external iliac chain lymph node WITHOUT significant radiotracer uptake. Continue attention on follow-up. The decipher was "in normal range."
We have not been able to return to this doc/facility due to extreme winter weather but have a virtual appt. next Tuesday. In the meantime, we asked a radiation oncologist we actually have in the family (nephew-in-law) in St. Louis area; he felt the scan was very good, wasn't worried about the lymph node nor the perineural invasion (don't think we brought that up but it was in the record.) He said Steve should also have a multiparametric MRI to find any pockets of cancer that the PSMA scan didn't catch- does this happen a lot??? We've been reading that PSMA's are the last word in metastasis!!!
So today my husband went back to original urologist for another cystoscopy and to discuss treatment options for his urinary retention as many things we have read/seen indicate it is absolutely fine to treat the BPH first. This dude is standing by his original opinion of my husband's cancer and feels it could actually be actively surveilled for a while, which is in DIRECT DISAGREEMENT WITH UROLOGIC ONCOLOGIST who, presumably, should have a more expert and trustworthy opinion.
Another thing you should know- Steve had his PSA done in August and it was 8.97, and then it was re-done a few weeks ago and it was 5.13 We are so confused!!
Our hope is to go ahead with whichever procedure to relieve the retention in the next month for starters, but I am absolutely feeling we need yet another opinion plus the MP MRI to most accurately stage the cancer. We do talk to the UO as I mentioned on 1/23 so it will be interesting to see what he has to say; I wonder why he hasn't posted his review of the PSMA scan results yet to the chart/portal, is that standard practice??If we do seek another opinion, is it better to go big, to somewhere we have no intention to go to for treatment, such as Johns Hopkins, or to the University of Chicago where there are 2 doctors I have been impressed by in videos/from their credentials; Dr. Scott Eggener, urologic oncologist/surgeon, and Dr. Stanley Liauw, radiation onc.
You should know my husband is opposed to doing a radical prostatectomy and is pretty dead-set against ADT so when the cancer is treated we are leaning towards brachytherapy. However we have yet been unable to meet officially with a rad onc as Steve is NOT a candidate for radiation rt now due to the retention issue. The MSK Nomics tool says surgery has a 38% chance of 'curing' the cancer which is one reason he is against it, btw.
I'm sure I've been too wordy and left out things you all need/want to know, so please reply with any advice, suggestions, questions and I thank you from the bottom of my heart in advance.
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AliceinW57
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Hi thx for reply. We are something like maybe 6-7hrs from Mayo?? Patient advocate from Prostate Cancer Research Institute (all those videos with Dr. Scholz!!) did not think much of Mayo...hate to sound like a rube, but do I just ASK for copies?? And what did you think of another opinion as the first two, as I've indicated, are opposed in a significant way 🙄
In NO way would many, or any, PCa specialists advise AS for those biopsy results. Perhaps Doc #1 says that because of age? other health problems...especially cardiovascular? Fitness...weight? I am surprised re that MSK nomogram result......what are you defining as cure? That nomogram doesn't calculate a "cure" rate?? with treatment I'd guess the 10 year PCa mortality rate to be 10% or less.
I don't recall whether or not that nomogram includes a data point for Perineural invasion?
This provides further info......courtesy Doc Google 🙂🙂🙂🙂
a 3rd opinion won't hurt...break the tie, if you don't want to make the decision yourself. Like those Docs you mention ......real specialists!!!!!!!!!!!
celebrate the clean PSMA !!!!!!!!!!! interesting......MRI may "see" cancer in prostate not seen by PSMA? possible, but low probability....anyway, if covered, and hubby doesn't mind at least 45 minutes enclosed in machine, can't hurt......and would certainly assist urologist or RO re treatment planning!!!
Read my bio. My dad was 74 when diagnosed after TURP. 4+3. He was put on old style hormone therapy (bicalutamide). In our country ageism is very common in medicine - my dad had NO comorbidities yet was very difficult to find doctor who would treat him to cure him. I hear over and over again that prostate cancer is disease that most men have, that they live with it and not die of it etc.
That was 7.5 years ago. Since than my dad had various hormone treatments, radiation which was way too late. He is 81, his cancer does not respond to hormone treatment anymore and is now in his bladder, bones and lymph nodes. He will die of prostate cancer. And he still does not have a single comorbidity.
Get curative treatment and be done with it. Also radiation is a form of curative treatment.
Your plan to see a really good Rad Onc, hopefully at a Center of Excellene or a good teaching hospital, is a good one. I am 3 years out from having HDRBrachytherapy and can tell you that not everyone is a candidate for this procedure (placement of tumors, etc). That being said there are other radiation treatments that have been very refined over the years that may also be available. Take your time, do your research, look at the possible side effects of each treatment and decide what you absolutely can not live with. My best to both of you as you move forward on this journey.
my husband had a similar profile with no perineural invasion, higher PSA and a low/intermediate decipher score.
He did MRI guided SBRT in New Jersey with a system affiliated with MD Anderson in Texas. No ADT.
His PSA has declined dramatically. He’s had a flare up of urinary symptoms that is now resolving.
I did lots of research too and unfavorable int needs to be treated.
I’m attaching a link to Elekta SBRT linac locations as the other vendor (meridian) has gone out of business. We were willing to travel and stay at a remote location as it’s just 5 treatments but we were lucky to find a good center nearby. The treatment is very precise and has good outcomes.
Here's a paragraph from the conclusions of the paper by Martinez, et al. comparing PSMA-PET to MRI:
"MRI is well recognized for its ability to identify local recurrence after prostatectomy, even at low PSA levels [20], [21], [22]. In our study, abnormalities in the prostate and the prostatic bed were better characterized on MRI at lower PSA levels while PSMA PET/MR detected more abnormal lesions at higher PSA levels, suggesting that combined utility with PSMA PET/MRI would be a better option for restaging in biochemical recurrence. This reiterates the findings of Guberina et al. [23] where PSMA PET/MRI detected recurrence in more patients than PSMA PET/CT and had a greater diagnostic confidence for the identification of local recurrent disease. The combined modality also has improved utility in guiding treatment planning, such as salvage lymphadenectomy [24] and precision radiotherapy [25]."
Your PSMA-PET report said that your husband has "Diffuse, mild and heterogeneous radiotracer uptake throughout the prostate". This means that there are many different spots of cancer throughout the prostate, rather than a single, large tumor. So, you might not be a candidate for focal therapy.
I would definitely recommend getting an MRI scan, because it has higher resolution than the PSMA-PET scan. MRI uses three different techniques to identify prostate tumors (T2, ADC, and DWI). With a MRI scan, you can complete the staging process and get a PIRADS score.
Given his biopsy results, I would recommend SBRT radiation treatment and/or Brachytherapy treatment. The combination of SBRT RT and Brachytherapy has the best rates of "cure", with surgery being the worst.
Univ of Chicago is a good choice. So is Mayo, if they take your insurance (check first). I would recommend finding a place that has an MRI-Linac X-ray machine (e.g., Elekta Unity) for RT. The rates of side-effects are 50-90% lower for MRI-Linacs compared to CT-Linacs. They have one at M.D. Anderson in Houston, TX that I'm considering traveling to (I live in Albuquerque, NM, but I went to graduate school in Madison, WI).
Also, there are alternatives to Lupron-based ADT that you may want to research. It is transdermal estrogen patch or gel therapy, which has fewer side effects than ADT, but still castrates men. Send me an email to janebob99@lobo.net, and I'll send you a bunch of papers. We're waiting for the results of a 10 year, randomized Phase-III trial (PATCH) to be published this Spring, comparing Lupron to TD estrogen patch . I expect it to be a game-changer.
You're doing a great job of researching! This blog is a wealth of information. You'll probably hear from Tall_Allen soon, who is a very knowledgable resource.
I agree with the other posters. Get his urinary problems fixed first, and then do RT later. You have lots of time to decide what to do next. Best of luck!
I have similar numbers and underwent MRIdian SBRT at UCLA. It wasn’t available for last 2-3 months but another company had purchased it and it is to be back soon. MRI prior to biopsy makes the most sense BUT the American Urological Association says it can be before or after. I would not rush to do the MRI now if some prostate reduction procedure is to be done before radiation as this will change the shape of prostate and I had to have another one after reduction surgery and before radiation. The traditional TURP can be done but a Holep reduction seems superior IF you have an experienced surgeon doing it. I know Chicago has a center doing a lot of them. I had Holep and recovery was very easy leaving hospital day after surgery with no catheter to take with me. ADT is individual decision and decipher may help. Generally adding ADT cuts recurrence in half. If the risk without ADT IS 10 percent it would be 5% with adt. If it were 30 it would cut it to 15 as a general rule per my RO. These percentage were examples only. Decipher gives some recurrence risks and MSK has nomograms on web as well
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