Hopkins doctor says T2a but said RP n... - Advanced Prostate...

Advanced Prostate Cancer

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Hopkins doctor says T2a but said RP not possible .

PBnative profile image

Hello everyone, Thanks for all the incredibly useful information . Hopkins doctor said my PSMA PET might not be accurate when it reported no mets . I got the bone scan he suggested which also said no mets . The PET report said “ the hyper metabolic mass … involves the left seminal vesicle and likely extends into the left periprostatic tissue.” Members of this site commented that the PSMA PET isn’t the best way to assess cancer in and around the capsule , so the SVI could still be in the capsule . When I asked a Hopkins doctor with experience using PSMA PET in clinical trials about its accuracy he said the PSMA PET was right about 2/3 of the time when it found “ no mets.”

Hopkins doctor reported this after visit on 8/5 : “Clinically localized adenocarcinoma of the prostate , clinical stage T2a, Gleason score 6 , PSA 61. “

He also reported: “Digital rectal examination reveals a normal rectal tone , a smooth prostate with a focal nodularity in left . “

What I don’t get us why Hopkins doctor said I, “may need a referral. “ He’s an expert in da Vinci . He also said RP not possible . He said ,” you’re in bad shape “ and when I asked if he could treat me he said ,” if it’s not too late “ or something to that effect . Not gonna see him again .

I have an appointment at Memorial Sloan Kettering on 9/9 to sort things out with a urological oncologist and a radiation oncologist .

The question is - how bad a shape am I in ? Any comments will be appreciated .

Thanks , Farlow

53 Replies

Do you have cardiovascular issues? You BP is a little high. When he's says bad shape is he referring to your cardiovascular health?

PBnative profile image
PBnative in reply to TomTom1111

I think he meant bad shape from the cancer . My BP there is somewhat from the “ white coat syndrome “. It’s usually 140 / 75 with amlodipine etc . I did have a TIA ten years ago and have a 930 calcium score ( but no symptoms of any kind ) I take rosuvastatin and lisinopril as well .

TomTom1111 profile image
TomTom1111 in reply to PBnative

Ok...Kind of a odd manner of communicatoin with a patient...geez...you had to feel pretty down after that appt. The high PSA probably means micro-metastasis so a RP wouldn't be curative but then again....getting rid of the "mother-ship" is the ultimate debulking that can be performed. But if he won't operate, then the Radiation + 2 years of ADT+Zytiga/predinisone would be a great treatment option.

I suspect with a PSA of 61 your like me. Normal imaging does not show much but he suspects there's much there imaging won't pu yet.

PBnative profile image
PBnative in reply to treedown

Yup , that’s what I’m afraid of . The Hopkins guy said the PSMA PET misses 1/3 of mets in his experience with clinical studies .

treedown profile image
treedown in reply to PBnative

Good luck. As far as me I started out PSA 156, have had 44 sessions RT 80gy and been on ADT almost 2 years. If nothing changes they will take me off ADT in 2.5 weeks and see what happens. I was treated with "curative intent" but my second opinion Dr at a center of excellance said there's no way I will be cured. All doctors were convinced there was more disease than could be seen (understandably) and the insurance company refused a Axumin scan. I hope to prove him wrong but I will consider myself lucky if a get a long remission. I guess if I do recur I will get the PET/CT scan I was refused.

PBnative profile image
PBnative in reply to treedown

Sure hope you can prove him wrong

Did you have mpMRI? PSA of 61 (sixty one if you didn't mess -up with the decimal point or suffer from accute prostatitis) is serious enough. What is your free/total PSA? Your numbers are not consistent. How this GS : 6 was derived?

PBnative profile image
PBnative in reply to Justfor_

Gleason 6 is from 2009 biopsy . I assume that it has morphed because the PSA has gone from 12 in 2019 to 61 now . The cancer appears larger comparing PETS IN 2019 and early 2021 . I assume the Sloan Kettering doctor will want a new biopsy next week .

Forgot to mention that Gleason 6 is from one and only biopsy in 2009 .

Stevecavill profile image
Stevecavill in reply to PBnative

Oh well ignore my comment below about that!

And this idiot of a doctor wrote in his diagnosis report a GS of 12 years ago. Glad to hear that you are not going to see him again.

PBnative profile image
PBnative in reply to Justfor_

In his defense when I said maybe I should get a tranperineal biopsy he said he could arrange it . All that boiler plate at the bottom of the report about discussing options with me was bulkshit. He didn’t discuss anything or suggest anything other than a bone scan which I got. AND which is probably a waste since the recent PSMA PET is just as good at spotting mets .

Justfor_ profile image
Justfor_ in reply to PBnative

You are accounting your stage bit by bit. A PSA doubling time, more or less, shorter than one year and radiographical progression surely stage you in the high risk group. In Australia they have a very recent trial that matches your profile. i.e. high risk but without metastases detected by PSMA. They treat with ADT for a number of months prior to RP. Check it out.

PBnative profile image
PBnative in reply to Justfor_

Makes sense. How can I find info on the Australian trial , PubMed?

Justfor_ profile image
Justfor_ in reply to PBnative

Did a quick Google search but didn't find it. It is a leg, or somehow related to the proPSMA trial, plus adjuvant ADT prior to RP.

PBnative profile image
PBnative in reply to Justfor_

Thanks , I’ll ask around

nonm profile image
nonm in reply to PBnative

Had the same experience! on the discussions of treatment options, which never happened in the real world but showed up in the report...wondering if that is common practice? or, it is the individual Doc's behavior?

The nuclear bone scan and CT scan for soft tissue...... I have had 25. Great in establishing a baseline..... and then looking at the results over time. .. however, with your vast amount of internet knowledge, you must be right and the RO is wrong........ I wish you well......... BTW, just on my personal experience, your probably have micro-metastasis taking place; therefore explains his words.... yet, there has been and continues today an ongoing discussion about RP or Brachytherapy and a short course of IMRT......

GD

Ouch

The PSA of 61 and the PSMA-detected extension into periprostatic tissue and seminal vesicles disqualifies you as a candidate for surgery. What would be the point if they would have to give you salvage radiation anyway, especially since salvage radiation is much more toxic than primary radiation? Might as well do it right the first time. (BTW - Misop Han is about as good as it gets for RP).

If you want to be sure about the extension, the biopsy should include tissue in the prostate fossa and seminal vesicles, as described here:

prostatecancer.news/2020/04...

PBnative profile image
PBnative in reply to Tall_Allen

I hear you . My Hopkins internist recommended Dr Han . I decided not to see him again because he didn’t discuss any other options for treatment. I think he was pissed that I hadn’t gotten an RP when his associate Dr Ballentyne Carter recommended it in 2009 . I’m not sure why he said T2a after seeing the PSMA PET . What would “doing it right the first time “ look like now if I am T3a with SVI? I appreciate your input very much .

Tall_Allen profile image
Tall_Allen in reply to PBnative

The correct way (as described by AJCC) to stage prostate cancer is using physical examination alone and not by using imaging. Because he felt "a single focal nodularity" he correctly staged you as T2a. His recommendation to you, however, does comprehend the evidence from the PET scan. Because of your high PSA, you are "high risk" anyway.

Doing it right the first time would entail whole pelvic radiation, 18 months of adjuvant ADT, and a boost dose (brachytherapy or SBRT) to the prostate (with at least a 5 mm margin).

PBnative profile image
PBnative in reply to Tall_Allen

Thanks again ! Makes sense to me now !

I was like you ,was non op. Imrt Lupron and tak-700( now unavailable) put me into a clear status after imrt in 2015 until now . I dropped the Lupron 2017 by chopping the balls. Many guys get an rp then oops they still need to do Rt and the rest anyway. We aren’t missing much by skipping surgery. I think the plan is good. Worked for me . Good luck .

PBnative profile image
PBnative in reply to Lulu700

That’s reassuring . Thanks for sharing . Glad to hear “ in the clear “ for 7 years

Lulu700 profile image
Lulu700 in reply to PBnative

The initial blast of dx can be tmi overload . Who are you going to follow ? You will do what’s best for you . I think that you can put this pc down.. self advocate after treatments get back to living . Good luck Sir!

Lulu700 profile image
Lulu700 in reply to PBnative

In the clear . For how long.? Spin the wheel! Like the 100 year old man said” It’s the first 99 that are the tuffest”! Old age is not in my cards . That’s all the more reason to enjoy what we can today Pb. Is that for pacific Beach ? Zonies from AZ. invade pb every summer to avoid the heat ! Good day!

PBnative profile image
PBnative in reply to Lulu700

I grew up in Palm Beach , Fla . Left there in ‘72, stole that nickname from my brother who uses it for his business selling Fla art

PBnative wrote 13 days ago --- "Forgot to mention that Gleason 6 is from one and only biopsy in 2009"

Just wondering if you have had a more recent biopsy? I find it unsettling that being a 3+3 things have progressed this far.

Haven’t had another biopsy. I assume the Gleason 6 has gotten more aggressive since my PSA is up to 61.

PBnative wrote -- " ...I assume the Gleason 6 has gotten more aggressive since my PSA is up to 61."

PSA and PCa are linked but HIGH PSa does not necessarily equate to high grade PCa. I found the linked information on PSA to be informative ---

exosomedx.com/patients/unde...

from above ^^^ " ...Known Limitations of PSA screening include:1- Low sensitivity and specificity for prostate cancer

2- Common conditions that lead to an increase of PSA such as benign prostatic hyperplasia (BPH) and inflammation of the prostate

3- PSA results must be used in combination with other factors such as age, family history and ethnicity

4- PSA cannot distinguish high grade from low grade prostate cancer ... "

also --- " ...What does a High PSA Level mean?There are many reasons that could lead to an elevated PSA level, and it is important to know the potential reasons why PSA levels are elevated as well as patient-specific risk factors for prostate cancer. Elevated levels of PSA can occur due to:

Enlarged prostate (benign prostate hyperplasia or BPH)

Prostatitis

Urinary tract infection

Recent ejaculation

Prostate massage

Vigorous exercise ... "

I went through quite a few similar items early on and quickly learned terms like "high" are very relative. High and 18 is different than high and 156. I remember "high" being used for anything over like 10. I don't remember ever seeing "very high" or "extremely high" being used.

treedown wrote --- " ... and quickly learned terms like "high" are very relative... "

As is aggressive!! When doctors tell men who have GL3+3 with 5% in 1 of 12 cores that they have *aggressive prostate cancer,* and RP is required immediately, that to me is tantamount to malpractice.

With what I know now I would agree with you. We all come into this disease like babes, unless a pc specialist already, and learn as we go. I have a lot to learn.

spencoid2 profile image
spencoid2 in reply to Lulu700

i am trying to justify "chopping the balls". I get" firm is gone" :) monthly and it would be convenient to not have to do that. guess i would still be on aberaterone

would side effects be lessor just the same since no testosterone?

Lulu700 profile image
Lulu700 in reply to spencoid2

Justify to yourself ? Or to others? For me it was a no-brainer . I was 53 and chopped em at 55 and dropped the lupron . Mine were shrunken and a bit painful . But it is was a psychological Surgery too . Ego our maleness our macho self worth all come into mind . For me it was like chopping dead wood from the tree . I didn’t care about the shriveled balls. I just wanted to live . Side effects are about the same . It Is from no t . I’ve read that less harm done to the heart .. If you ever decide to do it ? you’ll need to inject it ..if you want to feel that again .. There is no going back on this one . I was in a self loathing head space my first years with pc . I had some suicidal ideations after the orch for a few months . I started taking Sam- e and it perked me up out of that mess. BCBS didn’t get a payment one time that we went in for a Lupron shot and was told$7800 self pay ? Wtf? The wife got it straightened out but it showed me that I didn’t want shots for life . There not more of a personal choice than this . Whatever you decide ,it will be best for you .. I waited 18 months to do it at the request of my mo . Would have done it the first day otherwise. When I was told that t would kill me . I said “ off with the juevos “! They always got in the way anyway .

spencoid2 profile image
spencoid2 in reply to Lulu700

I was in Paris and needed a Firmagon injection. There it cost about $200 including EKG blood work and two Dr visits. I didn't even submit it to insurance which we do have for international coverage. Here they bill about $3000 and settle for maybe half that. Why are we paying these insane prices?

I am pretty close to deciding. We just got a beautiful new puppy who will probably keep his balls. When people affront me in the dog park I will just tell them that I got mine removed instead so he can keep his. After being without testosterone for over a year I am not going to do that to my dog.

Lulu700 profile image
Lulu700 in reply to spencoid2

Lulu we got after Rt. Best ever ! I once got strepp in Heidelberg visiting my bro in the army there. I went to the hospital . No papers no cost treated me for free . It was cool. But I expect they pay %50 taxes for this service? We fixed lulu. It hurt me . For females the can miss out in some bad cancers this way. It would be tuff for me to do it any other make now . Poor dudes! 😳

Why you you want a RP for low risk Gleason 6 disease? You’ll probably die of something else before it ever troubles you.

I went a different route. Luckily we are getting more and more options. My PET didn't even detect the primary, yet my PSA was over 40. Antiquated scanners, for sure. I was advised to have the PSMA PET Ga 68 which detected the primary and all of the mets. I had to go to Germany for this, but I opted for the LU177 treatment while I was there. Simple, no side effects. All Mets are gone, primary greatly reduced, and I am back to active surveillance. Highly recommend for those of us in that position.

Hi Jasmann, would like to know where in Germany did you get Lutetium treatment. I am getting to the end of my ADT second round after RP Jan 2018 later experiencing BCR, very high doubling time, 3 months. Anyway would be nice to know how and where you did it, thank you in advance

Lulu700 profile image
Lulu700 in reply to Jasmann

That’s fantastic . Gives hope to many! Thanks

I went to Prof. Dr. Richard Baum in Wiesbaden very close to Frankfurt. Excellent place since this is all that that do and they know the drill. Baum is notably one of the best focused oncologists out there. Here is his contact info:

Natalie Groppler

-Patient Manager-

CURANOSTICUM Wiesbaden-Frankfurt

in the DKD HELIOS Clinic

Aukammallee 33

65191 Wiesbaden

T 0 611 / 577 14169

F 0 611 / 57 75 87

groppler@curanosticum.de

curanosticum.de

Get a second opinion. When my bf was diagnosed in 2017 he was called OVER THE PHONE and told he had 2 months to live. This was at a big military facility in SA. Then we ended up in a big room with a lot of other pts and addressed as a group before taking us to the surgeon and radiologist. Each one selling their product, and stating they were the only option before he die. We went to MD Anderson and after reviewing his records and evaluations by surgeon and radiologist he was not a candidate x either treatment , so he was started on Zytiga. That bought him 22 months pain free . During that time he continued to see the surgeon in SA who kept repeating that MD Anderson did not know what they were doing and he would have a very awful death. I asked him not to go back to him and just f/u with MD Anderson. At the end of the day you need an oncologist that treats you like a person and gives you options, God knows that this is not an easy journey. This site offers a wealth of information, in addition to people who can relate to your situation and have experienced most of what is available out there.

I took the referral comment to relate to a transperineal biopsy.

PBnative profile image
PBnative in reply to dadzone43

Yes , I meant the biopsy in my note . He said RP not possible but didn’t explain anything . He did say “ no Mets “ report from PSMA PET is not definite. I think the only thing he suggested was a bone scan , which I got … another “no mets “ report but smart guys on this site say that PSA 61 indicates undetectable mets .

I had a similar experience with Dr Han. I was dx as GS 7 PSA 33 in 05/20 - high risk. I used Hopkins for a second opinion. My local URO was ready to do RP after only a 10 min consultation. That scared me into getting a second opinion.Dr Han said to me "Surgery will not fix your problem. You need to see an RO." I consulted with seven drs before deciding on a treatment protocol. Dr Han was the only one who recommended me to another specialty. That gave a lot of validity to his words.

I met with a local RO. I did 3 months of ADT prior to RT. I began ADT 09/20. RT ib 01/21. I plan to be on ADT for 24 months. In the past 11 month my PSA went from 33 to .1. I am very glad that I did not have surgery. I am very pleased with my response to treatment and am grateful to Dr Han for directing me to that SOC.

Lulu700 profile image
Lulu700 in reply to Burk

Bravo Burk! 👏👏👏👍

PBnative profile image
PBnative in reply to Burk

My complaint about Dr Han was that he didn’t explain anything to me . I’m grateful for the men on this site who have done for me what he didn’t make any effort to do .

Well, I was told that after having had TURP surgery for BPH ten years prior to my prostate cancer diagnosis I was NOT an acceptable candidate for a radical prostatectomy. I was directed towards getting external beam radiation instead. I wasn't keen on either the RP surgery or the radiation. I chose HIFU instead and received that after receiving a six month eligard injection in anticipation of the radiation treatment regime. The eligard shrank my prostate a bit, which was goodness with regard to HIFU. Prior TURP was also goodness for pursuing HIFU. My PSA was only 2.7 at diagnosis (biopsy after abnormal DRE). After HIFU it went undetectable for some time. Five years later it has crept up to 1.4.

I sense a bit (or a whole lot) of miscommunication between you and Dr Han. But I agree that surgery is not the answer, considering your PSA test result (61 ng/ml). The latter and the 'negative' PSMA scan shows that the cancer has spread to unknown sites.CLINICALLY LOCALIZED your report states; I don't think so!

I do agree that a second opinion is justified to clarify some important issues.

PBnative profile image
PBnative in reply to NotDFL

Thanks for your note . I’m am seeing oncologists at MSK tomorrow seeking advice on what sort of treatment I should pursue.

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