MRI Result Meltdown

User

Posted 24 May 2024 at 17:50

Thanks for the update mate and clarifying the biopsy issue. You'll be okay buddy. Your journey, like most of ours, will have delays and concerns, but you'll get there in the end. 👍

Edited by member 24 May 2024 at 17:53 | Reason: Typo

User

Posted 24 May 2024 at 18:15

Hi, I was recently in a similar position. Pirad 5, the MRI scan showed there was a tumour that had broken out of the capsule.

I had a. TP biopsy which came back clear. I was then given the option of a template biopsy, which I took.

Thankfully that also came back clear.

Although what you have sounds bad, it's not necessarily PC.

I was lucky and I hope you are too.

User

Posted 24 May 2024 at 18:27

Originally Posted by: Online Community Member

Hi, I was recently in a similar position.

Hi Shifty.

Thank you for your timely intervention.It was you, I was refering to in one of my early posts.

There was a chap on here recently who had a similar scan to yours and it transpired that the tumour was benign.

Edited by member 24 May 2024 at 18:28 | Reason: Additional text

User

Posted 18 Jun 2024 at 17:30

Hi all. Wanted to give a quick update. I just had my transperineal biopsy this morning at my local hospital. The procedure was done under light general anesthesia. They wheeled me into the operating room, started the I.V. and next thing I was waking up in the recovery room. No discomfort whatsoever. I was at the hospital for roughly 3.5 hours and am home now.

Only after effect right now is noticeably reduced urine flow though I am able to go which is the important thing. A little blood in urine but nowhere near what I thought it would be.

Now the nervous wait for the results. Doc said he'd call in a week or so when they come in. I'm worried that given my tumor has broken through the capsule that it will be a high gleason but hoping for the best. I'll post when I get the results.

User

Posted 18 Jun 2024 at 22:19

Thanks for the update mate. I'm glad you had a comfortable biopsy and hope your results are good. 🤞

User

Posted 27 Jun 2024 at 16:22

So, another update. I received my biopsy results last night. I feel sick to my stomach typing this. A good chunk of my cancer is Gleason 9 (4 + 5) w/ Cribriform. I know that's a really bad combination. Also, while my MRI only showed cancer on the right side of the prostate, the biopsy revealed that the left is cancerous as well (details below). Although the left side doesn’t look horrible, the fact that the MRI showed no cancer there and also showed that the surrounding tissues outside the prostate were clear (despite having “gross EPE”) I now feel certain that there must be cancer in the surrounding tissues and possibly lymph nodes as well.

Here's what the biopsy showed:

DIAGNOSIS:

A. Prostate, MRI target #1, biopsy: Adenocarcinoma, Gleason score 4 (60%) + 3 = 7, grade group 3 involving 60% of 3 of 3 cores.

B. Prostate, right mid, biopsy: Adenocarcinoma, Gleason score 4 (80%) + 5 (5%) = 9, grade group 4 involving 75% of 2 of 2 cores. Focal cribriform pattern 4 is present.

C. Prostate, right posterior lateral, biopsy: Adenocarcinoma, Gleason score 4 (60%) + 3 = 7, grade group 3 involving 45% of 2 of 2 cores. Perineural invasion is present.

D. Prostate, right anterior lateral, biopsy: Adenocarcinoma, Gleason score number 3 + 4 (10%) = 7, grade group 2 involving 10% of 2 of 2 cores.

E. Prostate, right anterior mid, biopsy: Benign prostate tissue.

F. Prostate, left posterior mid, biopsy: Adenocarcinoma, Gleason score 3 + 4 (10%) = 7, grade group 2 involving 5% of 1 of 2 cores.

G. Prostate, left posterior lateral, biopsy: Adenocarcinoma, Gleason grade 4 + 4 = 8, grade group 4 involving 5% of 1 of 2 cores.

H. Prostate, left anterior lateral, biopsy: Benign prostate tissue.

I. Prostate, left anterior mid, biopsy: Benign prostate tissue.

If it wasn’t for section “B”, it wouldn’t be so bad. That’s the pill I’m having a really hard time trying to swallow.

My next step is meeting with a surgeon on July 8th The point is probably moot as I doubt I’d be a candidate for surgery but he is a highly respected urological oncologist in our area and is affiliated with a hospital that has a very well respected oncology / radiology team. So hopefully, I’ll at least get pointed in the right direction for treatment of some sort. I also still need to get a PSMA PET scan to see if I’m metastatic or not. Can’t wait.

My wife and I had a good cry last night. I only got about 2 hours sleep. When she woke this morning, she started crying again uncontrollably (which got me started as well). Just a few weeks before I was diagnosed, her mother had passed away following a long battle w/ metastatic breast cancer. Now she has to go through this with me.

User

Posted 27 Jun 2024 at 16:47

Not the news that you were hoping for for sure but given your age I would think that surgery and then HT/RT would still be an option. It's unfortunate that your wife has had experience of breast cancer as that is a far more aggressive variant than PCa and trying to differentiate the two both in terms of aggressiveness and outcome in her mind is hard to do.

But the treatments are there and whilst not pleasant in terms of the life changes, once you get your heads around them they are not life limiting.

Do you have a date for the PSMA or bone scintigraphy yet?

Wishing you all the best and fingers crossed for some better news soon!

User

Posted 27 Jun 2024 at 17:04

Hello again mate.

I'm sorry that your biopsy results aren't as good as we hoped for. I fully understand how upsetting it is for you and your wife. My heart goes out to you both.

I know how difficult it is to be positive, but it isn't the end of the world mate. As I said, after my op my Gleason was upgraded to 9 (4+5) and T3a EPE. The surgeon also removed the seminal vesicles, 9 lymph nodes and some other tissue around the EPE, they all came back clear. Nearly 17 months later and my PSA is still undetectable. There are several others who had a similar Gleason and staging to me, who are also now apparently cancer free.

Best of luck with your next consultation.

Edited by member 27 Jun 2024 at 17:07 | Reason: Typo

User

Posted 27 Jun 2024 at 17:09

Hi again

I know it’s not the result you wanted but I would say that even with the G9 this cancer is still curable.
I read an article I can’t think of it was this forum or another one I read that is having some debate about the cribform that says there is some doubt about the histology being always negative. I will look for it and post it on here if I can find it.
I don’t know what the criteria are for surgery is where you are but but my husband has just had RP for his treatment and we await the histology .

I do know however that if you go down the Brachy RT/Hormone route that the stats are still good for a cure with G9 and EC.

Each of these steps, biopsy, scans, results are horrible and they have to be got through BUT I can honestly say I think when you get on your way with treatment things do feel better.

People with much more knowledge than me will comment but I wanted to say things won’t always feel this heightened and we are only a few weeks ahead of you so just try an take each day as it comes

very best wishes

User

Posted 27 Jun 2024 at 22:45

Hi MM

I’m really sorry to read what you and your wife are going through right now. It is horrendous, particularly with her mother passing away with breast cancer. I would however point out that breast cancer is generally considered to be much more aggressive than Pca, so you cannot draw a direct comparison, or outcome.

Originally Posted by: Online Community Member

B. Prostate, right mid, biopsy: Adenocarcinoma, Gleason score 4 (80%) + 5 (5%) = 9, grade group 4 involving 75% of 2 of 2 cores. Focal cribriform pattern 4 is present.

Cribiform normally presents in Gleason grade 4 and it has a slightly higher risk of metastasis. Slightly being the operative word here. The main driver of spread risk is the Gleason grade, and you only have 5% of grade 5.

You are curable. Whether by way of prostatectomy or HT/RT, you are absolutely curable ! Anything without bone metastasis is curable, and even with metastasis it is very treatable.

User

Posted 28 Jun 2024 at 22:10

Thank you all for your kind and encouraging responses.

Originally Posted by: Online Community Member

...I would think that surgery and then HT/RT would still be an option.

Crazy as this may sound, I'm actually hoping for planned combined treatment, though I'll be happy enough if ANY curative treatment actually can be offered. If I am lucky enough that my remaining scan(s) don't show any lymph involvement or distant mets and I am given a choice of curative treatments, my plan will be to ASK if it is possible to plan to have surgery followed by adjuvent radiation. Yes, I realize that PLANNING to have BOTH surgery and RT is at the far end of "radical" but given my stats so far (aggressive cancer w/ cribriform that has conclusively breached the capsule) I feel like neither surgery, nor RT individually will be enough to "cure" me. Surgery would get the bulk of cancer out but would likely leave some pc behind. It is also unlikely that HTRT by itself could clear the whole lot of it as there is a lot of it and aggressive cribriform cancers are known to have SOME resistance to radiation even with HT added (I found a study on it but can't find the link right now). I would think planning for both - or even surgery followed by early salvage HTRT (done at the earliest signs of PSA increase) would give the best possible chance. I'm not expecting the surgeon will be keen on this, but I'll ask anyway and see what he has to say.

Originally Posted by: Online Community Member

Do you have a date for the PSMA or bone scintigraphy yet?

Not currently. My next step is an initial consult with a very well respected urological oncologist on July 8th. This individual's practice will be taking over my care moving forward. The current urologist I have been seeing does not perform prostatectomies and the hospital he is associated with has a minimal radialogical facility. I would have liked to have started my treatment with the U.O. I am seeing on the 8th but he had a two month waiting list for new patients so I had to begin my journey elsewhere. Anyway, the UO will set me up with an appointment for a PSMA PET scan after I see him.

As for my current state of sanity, I'm doing the best I can to keep my sh*t together and remain positive. I have continued working through all this. My positives are I'm young, 51, in really good health otherwise. I have a wonderful wife of 20 years, great job, a beautiful home, and still have my dad around who is in amazing shape at 93 years old. I'm usually a pretty tough person in stressful situations but this is different. I've been through a couple of other surgeries (non-cancer related) and have been through some other incredibly stressful situations including sudden deaths of people I was close to, broken relationships, financial troubles, etc... I've always been able to cope on my own (never needed any meds for anxiety or depression). What has gotten me through these past situations was knowing that eventually, things would get better, no matter how far down the road and I would just focus on that. In this situation, at least at this point in time, I don't have that. This time, I am really struggling. I don't mean to harp on this guys, but typing this out feels somewhat therapeutic. I have been stressing HARD now for TWO SOLID MONTHS straight and I have at least another month ahead of me before I know if my pc has metastasized or not. Given all the evidence so far, it's a very real possibility. I know... I know... "Stop saying stuff like that", but that is the reality and I need to be prepared for it. It's weird, for some brief moments, I feel like I can handle it if it comes to fruition. Then, moments later, I become overwhelmed with fear and tension and I suddenly don't have the foggiest idea of how I would deal with it. This level of stress for this length of time is wearing me out. I'm exhausted. I need a break from it. Without some sort of positive news from a doctor (as in after all tests are done, he says - "Ok Mike, I believe we can cure this"), I don't know how to get that break. Dang it!! The medical community needs to figure out how to reduce the length of time of the diagnostic process!!!!! People should not have to go through this for so long. My primary care doc prescribed me some Xanax yesterday. I tried one last night and it did nothing for me. I don't want to start using any drugs right now anyway. I know I'll make it to the PET scan somehow, some way, though I may be crawling on my hands and knees by then. Sorry for the rant. I needed to get that out.

I will report back when I have further news. Thanks again.

-Mike

Edited by member 28 Jun 2024 at 23:21 | Reason: slight wording change

User

Posted 29 Jun 2024 at 08:30

Originally Posted by: Online Community Member

I have been stressing HARD now for TWO SOLID MONTHS straight and I have at least another month ahead of me before I know if my pc has metastasized or not. Given all the evidence so far, it's a very real possibility. I know... I know... "Stop saying stuff like that", but that is the reality and I need to be prepared for it. It's weird, for some brief moments, I feel like I can handle it if it comes to fruition. Then, moments later, I become overwhelmed with fear and tension and I suddenly don't have the foggiest idea of how I would deal with it. This level of stress for this length of time is wearing me out. I'm exhausted.

Hi Mike

I think that you are coping very well. Most of our journeys are full of high and lows. It's like being on a scary roll coaster that you can't get off for months. It's great that you are managing to focus on the positives. It helped me get through by thinking what would happen if I didn't have the treatment. When you think about it there are no alternatives, other than buckling down and dealing with everything that's thrown at you.

Try not to concentrate on what might happen and put all your energy into dealing what is happening.

Things will improve and you will regain full control of your own life. Very best of luck to you mate.

User

Posted 29 Jun 2024 at 17:50

Hi Mike

This is just the most horrible time! Waiting for results and treatment plan it really is torture.
I know you are trying to prepare yourself for the worst but being diagnosed metastatic from the beginning with a lowish PSA isn’t the usual (I know some are and there are low secreting types and other indicators) so hard as it seems there is still a good chance it won’t be as bad as you are fearing.
If there are no mets then you will be able to treat to cure BUT if it isn’t then the condition will still be treatable and reading as I have with my husbands Gleeson 9 it gave me some comfort how far treatment has come in and even in the last five years. There is so much hope to be taken from the people on this forum.

I just wanted to send you my very best wishes and to know others are with you in these difficult days. Be kind to yourself

User

Posted 29 Jun 2024 at 20:11

Mike

I like the way you think and combined surgery + RT/HT does sound like a plan if you can get the surgeon to agree. I chose surgery as I just wanted that cancerous lump out of me and based on my histology I always knew that HT/RT was on the cards - so be it. In fact I started HT in April and one more week of RT which hasn't been bad at all - waay better than I anticipated.

Getting your head around it is the hardest part and we all naturally think the worst - that's the human condition LOL

The only issue might be getting the surgeon to accept an operation that is not going to be a full cure - although they can go a bit further than the prostate, removing the nerve bundles and seminal vessels and they will naturally remove lymph nodes from the area, if they are someone who wants their performance measures to register 'successful' procedures in the league table then you might face some reluctance - but keep at them if needed!

Even if you then have to go on to HT/RT or cyberknife etc or even chemo then the treatments are extremely well understood and survival rates excellent especially as you have your age/fitness on your side.

Now you just to get that head of yours under control and put everything into perspective -;)

Take care and keep us in the loop

Steve

User

Posted 01 Aug 2024 at 17:03

Hello friends. Time for an update. On July 8th, I met with a very well respected and experienced urologic oncologist surgeon (operates 2 days a week, 300+ robotic surgeries per year!) to go over my case with him and get his thoughts on a treatment plan. He STRONGLY urged me to have surgery as opposed to radiation providing results of a PSMA PET scan (which he prescribed) prove negative for any nodal involvement or other metastatic spread. In fact, later that same day, the hospital phoned me with a surgery date of September 4th (pending results of the PET scan). I accepted the surgery date just to keep things moving along but also scheduled an appointment with the same hospital's radiologist (Aug. 6th) as I want to get both opinions before making my final decision.

This past Tuesday (July 30th), I had my PSMA PET scan. Given my high gleason (4+5) and visible EPE (on MRI), I was soooooooooooooooo scared of what the results would be. My hospital has a patient portal that all test results are posted on immediately when received. Yesterday, I received a text message that the results had been posted. My hands were shaking so bad I had a hard time entering my login credentials to view the report. THANK GOD, the results were negative for any evidence of any nodal involvement or other metastastic spread. Finally, a touch of good news! Surgeon confirmed the results as well. I have also received medical clearance from my primary care doctor to have surgery AND the hospital has now bumped the surgery date forward to August 19th. Oi! So now, after three months of waiting, fearing, waiting, stressing, more waiting... now it feels like the sh*t is hitting the fan!!

Next Tuesday (Aug 6th), I have a morning appointment with the surgeon to go over any final questions / concerns I may have about the surgery. Then, that same afternoon I have an appointment with the radiologist to discuss HTRT either instead of, or in conjunction with surgery. Again, Oi!!! Then it's decision time.

I am NOT looking for any advice as to which route to take. I am merely posting this as an update to my thread. This is my decision. I've done my homework on this and have my thoughts. I want the prostate out as I am genetically predisposed to producing prostate cancer and feel that radiation alone, at best, would only be a temporary fix. Plus, G4 cribriform (which I have) is known to be somewhat radiation resistant. However, I do recognize that in my case, surgery is likely to leave some cancer behind so I plan to push (now) for adjuvant HTRT therapy afterwards. I mentioned this to the surgeon when I met with him on the 8th and while he wasn't so much gung-ho on adjuvant therapy he did say "early salvage" treatment was an option which he defined as either a post surgical outcome having any positive surgical margin or 1st PSA score any higher then "undetectable". In that case, the HT would start immediately to prevent spread while allowing me to heal, then get on with the RT once my body is ready. I think we are close enough on the same page on this. Now the question is, will the radiologist tell me any different? If he's on board with this approach, then that is the plan. If he should point out that surgery for any reason makes future radiation treatment any more difficult, less effective or limits it in any way, that could be a game changer. Once again, oi. At least I have a weekend first to try and calm my nerves a bit. I think I'm going to prescribe myself a drink or two...

User

Posted 01 Aug 2024 at 17:48

Hello mate.

The difference between outcomes of RT and surgery is generally minimal. However, the outcomes for individuals can vary enormously. Based on your circumstances, do your own research, make a decision, stick to it and never regret it.

Best of luck mate.

Edited by member 01 Aug 2024 at 18:16 | Reason: Typo

User

Posted 01 Aug 2024 at 22:19

Hi Mike,

Sounds like you’re well on top of making your decision so all I can do is wish you good luck with your treatment.

Derek

User

Posted 07 Aug 2024 at 22:44

Quick update. I met with both the surgeon and radiologist yesterday. Both meetings went very well. Both docs were patient gents who answered all of my questions and each spent a great deal of time with me despite being very busy. To my surprise, the radiologist actually nudged me a bit towards surgery. He said he felt I would do well with surgery and was in the hands of an excellent surgeon. He also has no problem with performing early salvage treatment should I need it. This has reaffirmed my decision on treatment so I will move forward with surgery on Aug. 19th.

The surgeon told me something interesting about the surgery that I don't believe I've heard anyone else mention here (I could be wrong). Apparently, during the procedure, immediately following removal of the prostate, he sends a (slice?) of what was removed to an onsite lab that IMMEDIATELY checks for positive margins while I'm still under anesthesia. The doc is phoned in the operating room and given the result on the spot to let him know if he needs to remove more tissue. This is not the full histology report but rather just a quick check for positive margins. I asked him if this was unique to this particular hospital and he said "no, plenty of others do it as well". Perhaps I'm mistaken but I don't believe I've heard of this mentioned by anyone on this forum? Did anyone else have this done? I'm hoping this will be beneficial to me given the fact that my cancer has broken through the capsule.

The surgeon also offered me the option of having a "supra-pubic (??)" catheter instead of the standard urethra type if I wanted. He explained to me what it is but I wasn't sure if it would complicate the procedure in any way so I said just go with whatever is simpler so for now I will be getting the standard catheter. Starting to wonder though if supra pubic might be better (less discomfort)? How bad is the regular catheter?

User

Posted 08 Aug 2024 at 09:20

Hello again mate.

Your consultations seem excellent. The test for margins during surgery seem wonderful. I have heard of it before. I saw a surgeon doing the same on a TV programme here but he was dealing with a much more serious cancer operation. I'm also impressed with them giving you a choice of catheters.

Are you in the USA? If so this might explain your gold star service compared to our hard pressed NHS.

Best of luck with your op and please keep us updated.

Edited by member 08 Aug 2024 at 09:42 | Reason: Additional text

User

Posted 08 Aug 2024 at 17:15

Thanks Adrian. Yes, I am in the US (New York), but I don't think we're any better off than what you have over there. You are fortunate to have NHS. Don't knock it. Here in the states, health insurance is very expensive and has only recently become more widely government regulated and available to lower income individuals (which could change back if the fat orange guy gets elected president this year). I am fortunate that my wife's company provides us both with excellent coverage. BTW on a side note, her company imports top notch alcohol from your neck of the woods - any Scotsmen here??

I am also fortunate to live in a densely populated area that has several hospitals. I guess they each have there strengths and weaknesses. For example, there is a very large hospital just a few minutes from where I live that surprisingly has only ONE urologic surgeon and he apparently has been MIA for several months with health issues of his own. His profile says he's been "trained" on the DaVinci apparatus. Umm...no thanks. The hospital I chose is a further drive but has a very strong urologic oncology team. In some parts of the country, you'd have to travel by plane to have RP done. Depends where you are.

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