Pursue 2nd opinion?

Posted by happydappy @happydappy, 3 days ago

First a bit of context. Father had PCa at age 58 with radical prostatectomy. I'm 63, had urinary issues for several years, had a PSA of 4, MRI showed a 1.7 cm lesion graded PI-RADS 4, transrectal fusion found one core of 3+3(6) for GG1 and a couple other suspect cores. But the core from the lesion was clear. The doctor, from Duke - a center of excellence, said it's not unusual to find a lesion that size without malignancy. But he said he'd check with radiologist to ensure he got the needle into the lesion. He recommended active surveillance and to get another MRI and PSA in six months. When I followed up to ask about the biopsy accuracy, he didn't answer but rather said that the radiologist downgraded the lesion to a PI-RADS 4 "minus" and then said to have more tests in one year. A couple of questions...

1. Has anyone heard of PI-RADS 4 "minus" as I can't find anything about sub levels in this grading system? I'm a bit concerned about a 1.7 cm lesion as that seems rather large.
2. Is active surveillance typically six months or a year follow up because my doctor gave conflicting information?
3. Should I get a second opinion?

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clandeboye1 | @clandeboye1 | 2 days ago

In reply to @happydappy "What were your test results that had you getting a PSA every 3 months? Why shouldn't..." + (show)

My 1st Transperineal MRI Fusion Biopsy results were NEGATIVE . TThis was clearly in conflict with my MRI PI-RADS 5 result , whereby with RADS 5 your likelyhood of cancer , following a biopsy, is around 98 %
My 2nd Biopsy ( 16 core - 6 in the target area ) came back showing ALL 6 cores in the same target area as Biopsy # 1 as Gleason 3 + 3 = 6 . The remaining cores were negative .
Which one is correct ? This drove me to a 2nd and 3rd opinion of the Gleason 6 score .
The 2nd Opinion came back upgrading all 6 cores to Gleason 3 + 4 = 7
The 3rd Opinion came back : 4 Cores Gleason 6 2 Cores Gleason 3 + 4 = 7
If you have read Dr. Patrick Walsh's book : " Guide to Surviving Prostate Cancer " and other world leading Urologists , they recommend a 2nd or 3rd opiniion . Clearly your treatment options depend on the accuracy of your Gleason Score . My 2 Urologists , One at the Princess Margaret Hospital in Toronto , ranked in the top five cancer Research & Treatment Cancers in the world , plus my other Urologist , The Head of Urology at a similar leading hospital in Toronto recommended Active Survelliance .
Active surveillance recommends regular PSA tests every 3 months , and depending on the results , later to every 6 months . Plus a DRE and MRI at 12 to 18 months . Again depending on these results , a further Biopsy .
My age , almost 85, may well dictate my treatment options as I will decide , in consultation with my medical team , to discontinue AS .
At this juuncture I will likely select on of the Focal Therapies , NanoKnife which is fast gaining popularity worldwide ( less slower in the USA ) or TULSA- PRO . The other option on my list is MONOTHERAPY SBRT ( 5 Sessions )
Dr. Welsh's book has been mentioned in numerous posts on this , and other forums . It is a must buy to self educate new cancer patients and position them to be their own best " Cancer Advocates " .
I hope the foregoing answers your question . I could have well celebrated my 1st Biopsy results ( Negative ) and gone out and , being Irish , had a few pints of Guinness .
Recently I had a Bone & CT Scan which came back showing no metastasis .
My PSA at the point of my 1st MRI was 7.3 howeveer being on Dutasteride for 4 years , it is actually 14.6 . If you are on this BPH medication for a long time you have to double your LAB NUMBER PSA . or eventually multiply it by 2.5 times . Many GP and Urologists do not advise their patients of this important fact . Initially my increasing PSA was considered a direct result of my BPH . Additionally , which is common , my regular DRE tests were negative as my leison could not be detected by my GP or Urologist . Only via the MRI andd confirmed by the biopsy . Some people believe a PSA or MRI can confirm cancer - THEY CANNOT , ONLY A BIOPSY CAN .

happydappy | @happydappy | 2 days ago

Wow, thanks for sharing your experiences. While my lesion was graded PI-RADS 4 and was 1.7 cm, I was quite surprised that a core from the lesion was negative while another random core was 3+3. I am definitely seeking a 2nd opinion. Thanks also for the book suggestion.

jc76 | @jc76 | 1 day ago

In reply to @happydappy "I was diagnosed with prostate cancer, just a Gleason grade 1 that most recommend active surveillance...." + (show)

@happydappy
In answers to your questions to me.
Medicare does cover Decipher, PSMA, bone scans, and second opinons. That I can pass on from my own experience with my own insurance. I am not sure who you were seeing but would think they would have a billing department that could advise you about insurance that you have.

I also have BCBS FEP which also covers Decipher, bone scans, PSMA, second opinions. I cannot speak for all insurance but gave you my experience with the ones I have.

Regarding recommendations. I was at Mayo Jacksonville when I had my biopsies and consultation with R/O. It was the Mayo R/O that suggested doing a Decipher test, and bone scan. I did not ask for those test. I was not aware of what a Decipher test was nor was I on MCC (back in January of 2023).

My opinion is that any good and careful R/O, urologist would want a Decipher test done. But I think (I am not a medical professional and should not give medical advise) there are certain times a urologist or R/O is dealing with a scenario that are specific to your case.

It seems from your explanation of your case that you have a low level Gleason score (was it 3+3=6) if so what they told you about active surveillance seems to be the norm I am reading on MCC. It is is higher would suggest second opionin on the active surveilance.

But I want to add again I am not a medical professional and just commenting on what I am reading from other posters. None of us should give you diagnosis or what specific treatment you should get that is up medical professionals and your specific case.

You did not asked about second opinions which I highly recommend as well a most other MCC participants in that it can help you decide on accuracy of your diagnosis and the appropriate treatments.

When I went for second opinion at UFHPTI they wanted to do a PSMA to the add to the Decipher and bone scan done at Mayo. Insurance paid and there was no discussion about need to do it by R/O, he ordered it and said wanted to see results of PSMA.

Hope I was able to answer your questions @happydappy. I am unfamiliar with the numbers when used for Decipher test. My score was given to me as low risk versus my biopsies had me at intermediate.

CancerFree | @cancerfreekevin | 1 day ago

Your situation sounds similar to mine. Quick background, I'm now 33 months post RP and I cannot complain about the outcome when all relative factors are considered. After my 3+3 which grew to a 3+4 result I wasn't impressed with how my urologist pointed me towards the surgeons in his group while saying "don't waste your time looking at other options like MD Anderson etc, just go to these two surgeons and make a decision." While most might trust that directive, I'm a self-advocate and do not worship the medical profession so I took his self-serving directive(think economics of the group) and started researching with a mindset around truly understanding what is available without paralysis by analysis. This led me to Dr. Leonard Marks at UCLA who was truly impressive and he succinctly explained that the readings on the first biopsy were inaccurate, yet at the end of the day I chose(via a coin flip) RP with a surgeon from a different group versus the protocol Marks offered.

So my advice is simple as you should understand the myriad of options for the best outcome and becoming a self-advocate is critical to making the proper decision for your situation. I was amazed at what was available via the centers of excellence and there are doctors out there who truly care about your outcome versus just pushing their preferred protocol upon all who they come in contact with...

happydappy | @happydappy | 1 day ago

Thanks for sharing. Were you on active surveillance with the 3+3? How long before you got the 3+4?

clandeboye1 | @clandeboye1 | 1 day ago

In reply to @happydappy "Wow, thanks for sharing your experiences. While my lesion was graded PI-RADS 4 and was 1.7..." + (show)

As I noted in my lengthy response .
Get a 2nd opinion of your pathology result and confirm your Gleason Score .
DO NOT RUSH OUT AND SELECT A TREATMENT ( A KNEE JERK REACTION ) YOU MAY LATER REGRET .
You will not die tomorrow . You probably had the cancer perhaps 10 years or more . You have lots of time to make the right decision . Answer the question " DO YOU FEEL ANY DIFFERENT TODAY , KNOWING YOU HAVE CANCER , THAN YOU DID BEFORE YOU KNEW
I'll bet not . You will have a better appreciation of this disease after you "STUDY " Dr. Walsh's book .
Good luck .

CancerFree | @cancerfreekevin | 22 hours ago

In reply to @happydappy "Thanks for sharing. Were you on active surveillance with the 3+3? How long before you got..." + (show)

For me active surveillance meant always wondering If I'm waiting too long to make a decision. So I spent a nuanced 5 months actively exploring my options to come to a decision on a course of action so I could move forward versus actively looking in the mirror.