Finding and Managing Doctors

[Tall_Allen]

A few old articles that are still useful... (Hopefully, I fixed all the broken links.)

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

[cesces]

This is good stuff for beginners.

You should consider creating a section at the top of your blog, titled beginney and put these posts there, with descriptive titles.

[Tall_Allen in reply to cesces]

Good idea to organize the content completely. I'm not sure how to do all that.

[SPEEDYX]

Excellent info wish I knew this when I first received diagnosis.thankfully I was at Mskcc and it work out!

[Checkmate123]

Thanks for providing these links. They are extremely helpful in navigating me through the arduous process of making better informed decisions regarding every aspect of my treatment.

[kayak212]

Tall_Allen Well it looks like my PCa just took a major turn in the wrong direction. I have been on AS for 5 1/2 years as described in my profile and , at almost 81 years of age, and with several co morbidities, have up to now decided not to start any form of treatment if/as my disease progresses. I continue to be GS 3+4=7 as of my fusion targeted biopsy at Emory in July,2019, and since then have had 3 periodic PSA tests. I had my most recent PSA yesterday and unfortunately, my score went up from 10.63% in May,2020 to 15.33% yesterday. Coincidentally, i saw my cardiologist this week and he scheduled me for a Nuclear Treadmill test on 12-7-20. I have had a right coronary artery blockage for well over 20 years but it was not a problem due to smaller arteries growing and connnecting above and below the main artery. He thinks i may now need an angioplasty and stent insertion now, but is concerned about age in doing such a procedure and the potential other complications he says could arise.I continue to work out vigorously 3-4 times a week as i have for the past many years and have no problems doing so.

Anyway, i dont plan to address my PCa any further until i know the results etc of the heart issue,but if i get through it ok, I'm trying to decide what to do next about my PCa. I'm thinking the first order of business is to get an updated 3T Multiparametric MRI and have the results reviewed by Johns Hopkins. I am worried that such a spike in the PSA may mean that it has metastasized. Although i have always said i would not begin any treatment due to my age, I dont want to at least take a hard look at my options now that my PSA has reached this level. I dont currently have a Urol other than the one who did my last biopsy in mid 2019, but I could get him to order the MRI at Emory where i have had several others even though i dont plan to use them thereafter. After the MRI I am thinking about getting a second opinion/overall evaluation of my case from Dr.Joe Busch in Alpharetta, Ga and then deciding what to do ,if anything, about treatment.Busch is a Interventional Radiologist and highly regarded by many PCa patients i know from a forum i am a member of. Or, maybe i should be looking for a PET scan instead of an MRI? Im not familiar with that test ...need to get back into educating myself...also on various forms of treatment now available. I have always leaned toward SBRT as the type of radiation treatment i would consider if i wanted treatment, but again it has been awhile since i did a lot of reading on the various types of treatments currently applicable to my kind of case.

You have helped me a lot in the past and i value your layman opinion and personal experience, as well as the honesty and candor or your replies. If you have any ideas, thoughts etc about my best course of action vs what i have included in this message, i would really appreciate it. Maybe i should have the PSA test repeated due to the huge spike vs the last one which i have never experienced before. It definitely got my attention! Have a great Thanksgiving and Holiday season!

[Tall_Allen]

PSA changes for many reasons. What percent of your GS 3+4 was pattern 4 (from Johns Hopkins)? PSA change alone is not a good reason to stop AS, it's just a good reason to investigate further. I think the mpMRI and another targeted biopsy is a good move.

I am a big fan of SBRT - I chose it for myself 10 years ago. Minimal side effects and the treatments were fast and convenient.

You may be interested in the following nomogram:

webcore.mskcc.org/survey/su...

[kayak212 in reply to Tall_Allen]

Tall .,..thanks for getting back to me. I did run the Sloan Kettering nomogram again today with updated stats etc and it indicated that at both 10 and 15 years only 1 out of 100 men like me with untreated PCa would die from the cancer .At 10 years 10 of 100 men will be alive and at 15 years none will be alive. The Johns Hopkins 2nd op of my 7-3-2019 targeted fusion biopsy found that one tumor involved only 5% of the targeted speciman with Gleason pattern 4, and the other involved 2 cores each 1% with GS 3+3=6. This was a lower evaluation than i received from the Emory pathologist who originally read the biopsy and seemed about as favorable as it could be. I am going to get my heart issues resolved in December and depending on that I will then arrange for an updated MRI at Emory and at least meet with one of the SBRT RadOncs there to discuss my case and SBRT. That said, I'm still not inclined toward any treatment, but will look at the MRI and go from there. Also doing a repeat PSA test in 4 weeks just to confirm the one i had this week. Thanks for your input.

[Tall_Allen in reply to kayak212]

"The Johns Hopkins 2nd op of my 7-3-2019 targeted fusion biopsy found that one tumor involved only 5% of the targeted speciman with Gleason pattern 4, and the other involved 2 cores each 1% with GS 3+3=6. "

I'm confused by your answer. What I'm asking is this: In the core where GS 3+4 was found, what percent of the cancer in that core was pattern 4? I'm not asking, what percent of the core had cancer in it. Those are two different things.

[kayak212]

I'm quoting from the JH 2nd opinion of the biopsy .A.Prostatic ardenocarcinoma,Gleason score 3+4=7(Grade Group2) involving 5% of the total fragmented specimen, 10% Gleason pattern 4.Perineural invasion identified in this case.

[Tall_Allen in reply to kayak212]

Thanks. So the answer to my question is 10% pattern 4. The reason I was asking is that such a small amount of pattern 4 adds little to your metastatic risk. However, PNI does add to your risk. IMO, the PNI is more of a reason to come off AS than the small percent of pattern 4.prostatecancer.news/2018/03...

However, you have other considerations. I know it's not an easy decision. Let me know if I can help in any way.

[kayak212 in reply to Tall_Allen]

I see the comments about pni in the JH report. funny none of my Urols has ever mentioned that in discussing my biopsies before. I definitely see your point about the pni. So after rerunning my PSA at end of December just to be sure it is 15 or so, and after hopefully tying down my heart artery blockage situation on 12/7/20, I will proceed with the 3T Multiparametric MRI, the JH 2nd op of that test report and then decide who to see, probably getting Dr.Joe Busch to evaluate my case and options. Just wondering, if in fact my PCa has metastasized, at my age and with the continuing favorable results the SK nomogram shows, would you consider starting treatment or continue on the AS path i have been following so far? Even assuming my heart problem can be handled well, which in fact is what i do assume will happen on that, I have a hard time seeing the point of treatment starting at age 81. Thanks again, Tall. Have a great Thanksgiving.

[Tall_Allen in reply to kayak212]

I really have no idea what I would do in your shoes. Neither would any doctor you might ask. All I can do is make sure you are aware of the risks and benefits attached to each decision. I also think it's important that you express your feelings (as you've done so eloquently here) to your doctors. I do think you are raising a lot of good considerations, but in the end, this comes down to soul-searching.

[kayak212 in reply to Tall_Allen]

Excellent reply...thank you. I know you are right. It is pretty much going to boil down to what happens in re my heart. I will get to that point and have a much easier time of deciding how to proceed after i get the next MRI and see Busch.👍👍

[kayak212 in reply to Tall_Allen]

Tall... does the increase in the SIZE of the prostate typically result in an increased PSA score? just wondering if it might be a factor in my recent spike from 10.63% to 15.33% PSA score. I am being retested on 12/28/20 to be sure the last test was accurate. Since my latest diagnostic PCa "test" was my targeted fusion biopsy on 7/3/2019, should i even care what the MP 3T MRI i had on 12/18/2018 showed as my PIRAD scores? The reason i ask is because that MRI showed one lesion as a PIRAD 5, but when i had Dr. Peter Choyke give me a 2nd op on that MRI he said he did NOT see any PIRAD 5. When i told my Urol that he wouldnt even discuss it. We parted company at that point. If i understand PIRAD scores they only estimate the potential for cancer unlike a GS which grades actual lesions. I just dont want to waste my time focusing on areas which no longer count. I have had 3 biopsies and 5 MRIs in 5 years. Thanks so much.

[Tall_Allen in reply to kayak212]

Yes, BPH (enlarged prostate) causes PSA to increase slowly. It is common to have other prostate issues (BPH, prostatitis) along with prostate cancer. Choyke is certainly the one I would pay more attention to - he is part of the team that wrote the book on PIRADS scoring. I agree that PIRADS only shows suspicion whereas the biopsy shows what is actually there.

[kayak212 in reply to Tall_Allen]

Ok. Based on what you say about PIRADs I dont think i need to worry about that and should instead concentrate on the 7-2019 biopsy slides, report and JH 2nd opinion in my future game plan. I had heard great things about Choyke and he didnt even charge me for the 2nd op.!!

[kayak212 in reply to Tall_Allen]

I just read the article you gave me the link for pertaining to PNI.Very helpful in an alarming way. Still stunned that none of my Urols has ever mentioned it since the 12-3-18 MRI. Wont let that happen again.

[treedown]

What do you do when your insurance only allows you specific Drs in network?

[Tall_Allen]

I switched insurance plans.

[treedown in reply to Tall_Allen]

Unfortunately self employed and state options limited. It was better under original ACA but that has degraded over the years. Thanks.