New here, upgraded following RP to pT3a Nx R1 Gleeson 3+4=7 Tertiary pattern 5

Bowie · January 2022

Hello all, I would love some advice feedback, advice, suggestions for my husband. We are seeing his consultant on Tuesday February 1st next.

This site has been a wonderful find for us. I signed up last night. I do the research.

Background clinical details:

My husband is 53 years. Healthy. Never smoked. Harldy ever takes a drink. Vegetarian. His father had Brachytherapy aged 73 (9 years ago) for a Gleeson 3+3 = 6. Successful. No recurrence.

November 2020 my husband referred to the Rapid Access clinic following a PSA of 4.1

MRI scheduled. MRI results: MRI P4 left T2 NO Gleason 3+4 = 7 cores positive left lobe only.

January 2021 saw a consultant Urological and Robotic Surgeon

February 2021 Biopsies taken.

March 11th 2021 Urologist cancer confirmed on biopsies

May 20th 2021 had a Radical Prostatectomy

July 2021 first review following RP with Urological Surgeon. My husbands Cancer was upgraded.

RP PATHOLOGY REPORT May 2021

Specimen A: Adenocarcinoma

Histologic type: Acinar

Grade Group 2. Gleason Score 3+4 +7 with Tertiary Pattern 5 (<5%)

Percentage of Pattern 4: 20%

Cribriform Pattern: Present. Present

Percentage of Prostate involved by tumor: 40%

Lymphovascular Invasion: Suspicious Images Observed.

Intraductual Carcinoma (IDC) Not Identified.

Perineural Invasion: Present. Extensive.

Extra Prostatic Extension: Present Focally in Anterior Zone and Bladder neck.

Urinary Bladder Neck Invasion: Present

Surgical Margins: Extensively Involved by Carcinoma in Bladder Neck and Base (Pattern 3 extension:20mm)

Seminal Vesicle Invasion: Not identified.

Extensive amyloid deposits are Present. Confirmed by Congo Red. Consistent with Senile amyloid deposit. Correlate clinically.

Final Diagnosis:

Acinar Adenocarcinoma; Stage pT3a; Gleason 3+4 =7 (+5); PNI+++; Margin Positive; Bladder neck +

PSA since RP

My husband has had 3 PSA tests done since the RP in May 2021

PSA#1 July 2021 0.03

PSA#2 Oct 2021 0.06 (3 months later)

PSA #3 Jan 2022 0.11 (3 months later)

Bladder control is excellent. No incontinence. Zero Erectile function and is on Sildenafil twice weekly.

Since the RP we have had two meetings with the Consultant. Our third is on Tuesday next (Feb 1st)

At the first meeting post RP the consultant said that my husband’s final results do place him at an increased risk of recurrence down the road. That in a worse case scenario if his PSA goes up, he will need Radiotherapy down the road.

At the second he said that several of the features (above) are high risk. He said that with these aggressive features he will need radiotherapy but wants to wait until 0.02. He said that that is the trigger. He said we need one or 2 more PSA’s. He said he would like to schedule a bone scan and a Cat scan if the PSA goes up.

So, we will be meeting him on Tuesday next and the PSA has gone up again.

Please, any advice, comments, anything we should ask, anything that your experience has taught you ….anything at all would be so welcome. Anything.

My sincerest thanks.

Bowie · January 2022

Ps. I'm scared. And I'm sad that all this is happening. I hide it and stay positive, but I'm scared because the PSA is going up.

Also, I made a typo...the consultant is waiting for a 0.2 (trigger), NOT 0.02

Bowie · January 2022

Can someone please help?I see that I have accidentally posted the same discussion three times! My apologies! Please could a moderator delete the other two? Thank you so much!

CSNSupportTeam · January 2022

Hi Bowie,

We noticed the multiple postings and removed those for you.

Best,

Ken

CSN Support Team

Clevelandguy · January 2022

Hi,

I have to agree with your doctors and I would wait til the PSA reached .2, which is the point where they say the cancer has returned. If it was me I would want the most sensitive imaging scans(PET) to try and pick up where the cancer has spread to. CAT and bone scans will also help to find where the cancer has spread. Might be kind of hard to see right away as the escaped cancer could be very small and not show up easy on imaging scans. Radiation and testosterone reduction drugs will hopefully kill the remaining cancer. Now is the time to start doing your homework on what’s next after surgery and discuss with your team of doctors(Urologist & Oncologist) the next step of treatments. Great to hear that your husband had very little or no side effects from his surgery. I have included a link to get you started, let us know when you get more info from the scans. Lots of helpful folks here who have experience in different treatments types for post surgery cancer.

https://www.cancer.org/cancer/prostate-cancer/treating/recurrence.html

Dave 3+4

VascodaGama · January 2022

Hi Bowie,

Welcome to the board.

I am sorry to say but I concur with his urologist's comments. Your husband is experiencing biochemical failure (constant increase of the PSA) which relate to recurrence. The good thing is that his case is treatable.

The pathologist report on the specimen (the whole gland) identified three issues which makes the case riskier and in need of additional treatment. The cribriform type in acinar PCa are typical in metastatic cancer and the identified extraprostatic extensions reinforce the comment on radiotherapy. The Gleason grade 5, though small percentage, is the highest and prone to spreading.

His doctor wants to wait for a PSA of 0.2 ng/ml as a formal way recommended in the NCCN guidelines. PSA =0.2 after RP signifies recurrence and intervention is best if done before a PSA of 0.4. Meanwhile, additional image studies are required to verify the extent of the spreading.

Nx in the pathological stage signifies that lymph nodes were not presented for analysis. This is a rare case in prostatectomy as usual surgeons dissect a few number of LN together with the gland. Another missing item is Mx (far metastases) which the doctor will be checking via the bone scan. In your shoes, instead of a CT, I would request a MRI 3.0T. The CT is not reliable in small tumors, which may be your husband's case. PSMA PET scan is also very reliable when the PSA is higher close to 0.7 ng/ml.

Typically, pT3a cases are lead to salvage radiotherapy (SRT) that can be done in combination with hormonal treatment (ADT) but the cribriform type cases some doctors recommend a combination of chemotherapy plus radiotherapy. You need to get second opinions on the matter.

You need to move but do it coordinately. You should consult a radiotherapist and probably a medical oncologist expert in prostate cancer. Uro-oncologists are good too but get second opinions from other doctors (with all the data in hand including image studies) before deciding on your next step.

Best wishes and luck in this journey. VGama

Old Salt · January 2022

It's clear that the surgery did not remove all cancer and that further treatment is needed, sooner rather than later.

I can't say exactly which way to go, but the following initial (!) approaches are possible:

Radiation + androgen deprivation therapy (ADT)

Radiation + chemotherapy (possibly followed by ADT?)

As others have pointed out, a scan will be necessary to locate the (major) cancerous sites. At this stage, a PSMA scan might be most suitable; I hope that your husband will be able to get one.

Bowie · January 2022

Dave 3+4, VascodaGama and Old Salt,

I am very grateful for your replies. I truly am as is my husband. I came here to reply several times, but the truth is I am a little overwhelmed for the last few days. Did any of you ever hit a few days like that?

I guess we have been just soldiering on for the last 12 months and keeping positive but it just feels unfortunate that this wasn't resolved with the RP and that the PSA is rising.

You have given me so much to go forward with when we see the consultant. I will try for the PSMA Scan. I looked it up and there is only one in my country and there is a waiting list. But we will see.

You've been so generous with your time, advice and suggestions and I really do appreciate this. Thank you for the detailed responses. I will continue to update you if that is okay.

Good wishes to you in your journeys. Thankfully it is the weekend, we will be able to spend time in the garden. Hopefully you all enjoy yours, Bowie

Bowie · February 2022

Update #1 Feb 2022: Upgraded following RP to pT3a Nx R1 Gleeson 3+4=7 Tertiary pattern 5

On the Erectile Dysfunction he said it’s early days. There are a few things to try – pump/injections sometimes it recovers, sometimes it doesn’t, but the RT will cause another insult on top of the previous injury so…..

Given the way the PSA is rising (in just over 8 months post RP) he will schedule a set of scans in 3 months’ time then refer to a Radiation oncologist. Given higher risk features he feels the oncologist (and he comes highly recommended) will do 7 weeks RT with 6 to 12 months ADT. You guys were right!

He also spoke about Radiosensitization. I need to look that up.

Because, he said, the scans (CT, MRI and Bone Scintigraphy) most probably will not show up distant metastasis yet, the Oncologist will target the Prostate /pelvic area. We will see. He said they will take a team approach.

He said there is something inside causing the PSA to rise. He said that what you can never legislate for is ‘sneaky little cancer cells that have gone off somewhere and hidden themselves away from the prostate.’ He said that if they "declare" themselves (I liked that!)...anyway.... at a later stage he will address that then. But for now, lets do the scans in 3 months, lets refer to oncology and we will talk.

We asked about the PSMA Pet scan. He said that it is best at 0.7 but he said it can pick up 0.5. He said he would not wait until then given my husband’s aggressive cancer. He said he would prefer to act before 0.5 in this case because of the bladder neck and base involvement, Cribriform, pattern 5, EPE, positive margins etc…

I think it went okay. Please please do let me know what you feel/think??? 😊 We feel we have a direction. I would have posted last night but it is a long journey there and back and today was at the hospital with our son. He has a disability. I was just so tired.

Good wishes to you all and my thanks, really truly for being here. I'd be lost without you. Happy tomorrow , Bowie’s wife

VascodaGama · February 2022

Hi again,

Your doctor's comments seem reasonable. He is saying; "wait three months, get the image studies and then consult a radiologist to make a final decision on the SRT protocol. In fact he is following the standards of AUA which recommends a sort of sequential therapy (salvage after salvage when needed).

I do not know how experienced this doctor is in treating PCa but in my opinion he has failed in not dissecting a number of lymph nodes during surgery for analysis by the pathologist. Probably he trusted the results of the initial MRI reporting T2 N0, as described in your above post, but now comments that those image studies are not reliable to identify small tumors.

However, his participation in the continuing treatments is minimal. Radiation treatments are done by radiologists and further on you will need a medical oncologist.

Regarding the salvage treatment protocol, it starts with (ADT) two weeks of antiandroges followed by a LHRH agonist shot, and two months later your husband will start the daily radiation sections (except on Sundays) that will be prolonged to 8 to 10 weeks. Each daily section takes about one hour so that choosing a local radiation clinic of easy access may be the best.

The Radiation planning should include in its field a series of lymph nodes apart from the prostate bed. You should inquire about the details planned by the radiotherapist. He can save the area close to the bladder sphincter (avoiding incontinence issues). ED will not be affected further but radiation will create scars at the colon. It takes two to three months to recuperate from the RT side effects. Those caused by ADT will last about three to four months long after the end of the drugs effectiveness.

In my opinion, waiting three to six months to start RT is reasonable. The present status will not alter during this period so that you can you can use this time in preparedness. It will be wise to have a full panel blood tests that should include, apart from the PSA, a testosterone test to check future ADT issues. A colonoscopy to check for ulcerative colitis should be done before RT. It will help in the planning of the areas of attack. DEXA scan helps in checking for any osteoporosis/osteopenia typically affected by prolonged hormonal treatment.

Best wishes,

VGama

VascodaGama · February 2022

Clevelandguy · February 2022

Hi,

Sounds like you have a plan to start your treatment path. Sometimes you have to let the cancer grow so you can find it to radiate, hopefully the scans will find areas to treat. If it was me I would be researching the various ADT drugs and their side effects so when that time comes you are prepared to decide with your doctor(s) which drug will work best with the least side effects. Do you know what type of RT your doctor is think of? Might want to look into those also, I have heard Cyberknife and Proton radiation are both very good. I have included some links you might find interesting.

https://training.seer.cancer.gov/treatment/radiation/types.html

https://www.cancer.org/cancer/prostate-cancer/treating/hormone-therapy.html

Dave 3+4

Bowie · February 2022

Thank you VGama and Cleveland guy,

There is a lot to try to absorb in the last couple of days. I'm trying not to make mistakes and yet I feel I'm making them. I'm kind of at sea right now. And scared. I'm scared. Really scared. I should have been more assertive about those Lymph Nodes. Do you know at our VERY FIRST MEETING with the surgeon I asked about removing them entirely!That's what I wanted...... And now this.....

Trying to hold it all in and do the research. I do the research, all of it. My husband has looked up nothing. Spoken to nobody. Nothing. I wish I had a bigger family. Isn't this awful, all of it. All of it. Really it is. I just don't want to make a mistake. x

Ps. I will get my head together but this has just bashed my happiness. I joined /signed up to the NCCN this afternoon. I have so much to read.

Well wishes and my thanks to you , Bowie's wife x

Old Salt · February 2022

I am sorry that you need to be the one to study your husband's case, but you are doing a great job. It is very common to feel depressed, anxious or angry when faced with prostate cancer. Many though will 'settle in' once they become more knowledgeable. I hope that that will be true for you as well.

With respect to the medical details that you have provided, I agree with the others that the path forward seems reasonable. Let's hope that it will be successful.

Now, with respect to those lymph nodes, I am not a doctor by any stretch, but I have read that they provide a useful function and that removing all of them will lead to other problems. But, as Vasco already stated, many surgeons do examine a few lymph nodes during surgery and may modify their procedure based on the pathological results. However, there must be pros and cons because not all surgeons do this.

Here's a link to a paper that appears relevant:

Reconsideration on Clinical Benefit of Pelvic Lymph Node Dissection during Radical Prostatectomy for Clinically Localized Prostate Cancer - FullText - Urologia Internationalis 2019, Vol. 103, No. 2 - Karger Publishers

Bowie · February 2022

https://csn.cancer.org/discussion/comment/1693221#Comment_1693221

Bowie · February 2022

Bowie · February 2022

Sorry if I had sounded sad. I deleted my posts.

VascodaGama · February 2022

Hey, Bowie

I didn't read the post you deleted but it is natural to be sad and worried when our partner confronts cancer. We all go through that experience. In the end we are dealing with the unknown and just trying to fight it the best we can. Nobody is to blame.

Your husband is suffering too even if he doesn't seem to collaborate in your investigations. ED affects us men mentally a lot. You need the understanding of each other, find that way of happiness and advance in life.

We need luck too. Let's hope for a successful SRT.