Confused by diagnosis

User

Posted 16 Jan 2024 at 15:56

Well I'm glad my hospital are on top of the game with Active Surveillance. I had my PSA test mid December. Today I finally received a letter from the Consultant, marked urgent, dictated 20th December but not typed until 13th Jan! It basically says I should get tested again in 3 months - mid April (bear in mind the review was done mid December) then as a follow up action it confirms I should be reviewed in the virtual clinic in mid May. Luckily the blood test forms enclosed state collection needs to be by mid March, so at least one out of the three dates was correct. Doesn't inspire much confidence...

User

Posted 16 Jan 2024 at 16:07

Hi Ian,

My first consultation was 17th December 2020, the letter summarising it was typed on 11th January, 2021. This was at the height of COVID restrictions.

Keep them on their toes, mate. 🙂

User

Posted 18 Jan 2024 at 16:21

Hi folks

I wonder if any of you can help me understand a couple of bits I have now seen as of today, in my biopsy report (I requested a copy and just received it).

A bit of background - I requested it because my wife saw a PCUK publication which stated that men with more than 5mm of cancer present in a single core, should not be offered AS.

A) I have 3 cores with 6.9mm, 10mm and 11mm in them respectively.

B) I have 1 core with Perineural Invasion present.

C) I have 1 core with Crib/IDC present.

I don't really understand the significance of B or C, so thought I'd consult the wealth of knowledge on here?

Thanks in advance for any replies.

Ian.

Edited by member 18 Jan 2024 at 16:35 | Reason: Typo

User

Posted 18 Jan 2024 at 18:44

Hi Ian,

The histology of my removed prostate revealed perineural invasion. I emailed my consultant's secretary to ask what it meant, she contacted him for me but I never got a clear reply. I'll ask him direct at my next telephonic consultation in mid February. I suspect it isn't good news. I think it means cancer cells were found surrounding or growing alongside a nerve fibre within the prostate. Apparently in my case this can increase the chance of recurrence.

It also showed extraprostatic extension, (I think that means it had breached the prostate capsule) but no extraprostatic perineural invasion ???

All Double Dutch to me.

As for your other points I haven't got a clue mate.

Edited by member 18 Jan 2024 at 18:56 | Reason: Not specified

User

Posted 18 Jan 2024 at 21:57

Originally Posted by: Online Community Member

this is one of the reasons my husband decided against AS, I am worried sick about the risks of damage from RT but equally worried about delays with AS and spread as contact with CNS is as hard as contacting Robbie Williams 🤦‍♀️ not helped by conflicting MRI and biopsy. CNS called Wednesday saying she’d had a message he wanted to talk - he left the message for a call back two months ago …

it’s hard to know what’s best.

User

Posted 18 Jan 2024 at 22:02

Hi Harty17/21L,

I can only pass on what I understand about " Crib" (Cribiform Morphology). I was diagnosed with this from my own Histology Report (i.e. after surgical removal). It seems to mean that, under the microscope, the cancer shows a different pattern to the standard form, and this is often indicative of a possibly more aggressive cancer.

I can't help at all with your other queries - sorry.

Best wishes,

JedSee.

User

Posted 20 Jan 2024 at 16:35

Hi everyone. This has been an interesting thread so I hope you don't mind if I jump in. My husband (just turned 70 on the 18th) was given his diagnosis a week ago. For a few years now he has been on Tamsulosin for an enlarged prostate so had regular PSA checks. February 2023 it was 5.1 and then late November it increased to 6.1. He was then sent for MRI and with that showing PIRADS 4 (organ confined) had the usual biopsy. They took 20 cores. Basically we were told 'intermediate risk prostate cancer', multifocal disease predominantly Gleason 3+3=6 with one single area Gleason 3+4=7. All cores less than 5% which sounded okay but my concern was ALL of the cores showed cancer. The consultant gave us the options of surgery or radiotherapy with HT. I could tell that my husband was already thinking 'get rid' so I asked the consultant what would he choose and he said surgery.

Anyway our Hospital has now transferred all his details to Addenbrookes so it will be interesting to see if the next consultant shares the same view or tries to offer us a different form of treatment. Whatever, I think my husband is definitely set on surgery and as much as he is not looking forward to it, understandably, he very much wants to give himself the best chance of a long life without the disease that he can - as do I.

Edited by moderator 20 Jan 2024 at 19:05 | Reason: Not specified

User

Posted 20 Jan 2024 at 17:03

If it is of any help, I had surgery to remove my prostate at Addenbrookes late December 2021 and all the surgeons there have a great reputation for undertaking this particular procedure. My recovery has been virtually textbook, though because everybody is different, even with the same staging, nothing can be guaranteed.

My history,if interested can be found under my profile.

Ivan,

User

Posted 31 Jan 2024 at 21:54

Originally Posted by: Online Community Member

Hi folks

I wonder if any of you can help me understand a couple of bits I have now seen as of today, in my biopsy report (I requested a copy and just received it).

A bit of background - I requested it because my wife saw a PCUK publication which stated that men with more than 5mm of cancer present in a single core, should not be offered AS.

A) I have 3 cores with 6.9mm, 10mm and 11mm in them respectively.

B) I have 1 core with Perineural Invasion present.

C) I have 1 core with Crib/IDC present.

I don't really understand the significance of B or C, so thought I'd consult the wealth of knowledge on here?

Thanks in advance for any replies.

Ian.

I've only just seen this post. Crib/IDC is aggressive. Maybe this was a miniscule amount? Your PSA history from December was a bit steep. I'm not a medic I haven't seen your test results, so I don't know how to interpret this.

After your PSA next March, make sure you have a face to face meeting with the consultant.Take in your biopsy report, because you can be sure the consultant won't have his copy. Ask him to explain it to you, and confirm if you are still suitable for AS.

Dave

User

Posted 25 Mar 2024 at 13:01

So, my result this week is 7.9. So far I have:

April 2023 - 5.2 / May 2023 - 5.9 / Dec 2023 - 6.8 / Mar 2024 - 7.9.

My consultant apparently thinks we should get one more test in 3 months, then if it is still rising I will be given another MRI and then possibly biopsy for re-staging.

I have asked for at least a telephone consultation with her to discuss these results, but am not sure if this is going to happen, as they are "very busy...!"

I think I'm resigned to the fact that I'm heading towards coming off AS and getting this thing dealt with, and I'm starting to think the sooner the better. Apparently it's not the actual number they are concerned about, but the continued rise/rate of rise.

User

Posted 25 Mar 2024 at 13:19

The trend is ever upward, as mine was, and if I was you I would come off AS and decide on a treatment plan. I was on AS for around 6 months and although my Gleason score remained the same (3+4=7) after my prostate was removed and sliced and diced my staging was increased from T2 to T3a (Because the cancer was bulging out of the prostate).

Ivan

User

Posted 25 Mar 2024 at 16:25

Why wait another three months after three consecutive rises? It seems on an upward trajectory.

Do you have one lesion, away from the edge?

User

Posted 25 Mar 2024 at 16:42

Two tumours mate, one each side, 10mm and 11mm long, but contained within the capsule.

User

Posted 25 Mar 2024 at 17:07

Originally Posted by: Online Community Member

Can't disagree with that. You've had a good run on AS.

Potential side effects of radical treatment aren't appealing, but I don't need to remind you of that, and you know where it's going anyway.

Good luck.

Kev.

User

Posted 25 Mar 2024 at 17:15

Originally Posted by: Online Community Member

My consultant apparently thinks we should get one more test in 3 months, then if it is still rising I will be given another MRI and then possibly biopsy for re-staging.

I have asked for at least a telephone consultation with her to discuss these results, but am not sure if this is going to happen, as they are "very busy...!"

Very poor response. I'm sure everyone is very busy but that's no excuse for not keeping you properly updated.

Sorry to see you've had another PSA rise mate. At least, ensure you get the MRI follow up.

Edited by member 25 Mar 2024 at 22:22 | Reason: Typo

User

Posted 25 Mar 2024 at 18:02

Hoping you get a response soon, no matter how busy they may be at least a phone call will help to discuss your concerns. Hopefully that could lead to an MRI which could reassure you whether AS can be continued or it’s time to have a re think. Good luck.

User

Posted 27 Mar 2024 at 21:46

Very fed up. Despite promise of a call back yesterday I have still not heard from Consultant. I stuck my numbers into the Nomogram (?) online, and my doubling time is now 21 months. According to any info I can find, I should be coming off AS now and starting treatment. Despite my diagnosis being downgraded to 3+3=6, I have bilateral disease, Crib in one core, PNI in a second, and now a 52% increase in PSA level in 11 months, from 5.2 to 7.9. I have a strong gut feeling that all is not rosy.
Does anybody with more knowledge than me (not difficult) think I’m over reacting based on the facts above? Any advice welcomed.

Ian.

User

Posted 27 Mar 2024 at 21:52

They won't show any urgency with a doubling time of 21 months - a doubling time of 6 months is more worrying and a DT of 6 weeks requires clinical review!

I have got confused - the call you are waiting for from the urologist - is that a telephone appointment? If not, can you call the urologist's secretary and say you want an appointment to discuss? It isn't urgent and the uro's view to test again in 3 months seems sensible but yes, it seems like AS is no longer the right choice for you as you don't feel confident in the way it is being managed.

Edited by member 27 Mar 2024 at 21:54 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Mar 2024 at 22:14

Thanks Lyn

it wasn’t a prearranged appt, I got a call from the nurse on Monday who said the Urologist would call me back on Tuesday to discuss my concerns.

I think my main problem dealing with AS stems from being told originally that I couldn’t go on it. This was due to my Gleason score being 7, and the fact that in her words “there’s quite a lot of cancer in there” both sides, 11 cores positive. When the second pathologist downgraded my score and recommended AS, I took it to delay the obvious side effects of treatment, but I can’t help constantly wondering which lab got it right. I suppose the rising PSA is steering my brain towards believing the first one.

Thanks for your reply - your input is appreciated as you are one of the best sources of info/advice in this group 👍

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