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3mm atypical lesion?

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User
Posted 27 Sep 2024 at 14:37

Hi All,

I'm a 48 year old man who has been taking part in a clinical trial due to a family history of Prostate cancer.

I'm heading for a biopsy in the next week after an abnormal finding with my MRI with contrast.

My PSA is only 1.2, but that has changed from 1.1 earlier this year and less than 1 last year.

I took part in the trial due to family history, so this may have been a blessing in disguise.
Psychologically i'm feeling fragile today after the call from the nurse.

The MRI report might as well have been written in a different language, so i'm Googling to try and understand what all of the acronyms mean.

I have a PIRADS of 4 but a Likert of 3 and the nurse explained and was frank enough to say that its unclear, i.e. the PIRADS is high but the Likert following the examination from the specialist puts it on the borderline, but he would have told me honestly if they were sure it was Prostate Cancer.

As i understand things, the PZ, TZ etc on the report refer to the different regions of the prostate?
I apparantly have a "3mm focal lesion, right apex peripheral zone" Which requires biopsy.

My report says the following, "TZ: No suspicious focus. (2/5)" but i'm not entirely sure why its a 2/5

Can anyone enlighten me?
Thanks so much in advance.

User
Posted 27 Sep 2024 at 15:21

Hello mate

I'm sorry that you've had to join us, but welcome to the forum.

I found this link useful when trying to understand my MRI results 

https://prostatematters.co.uk/diagnosis/mri-results/

I'm not medically trained but as far as I am aware the MRI is only an indicator. It's the biopsy that will give full details of anything untoward.

You're obviously aware that a family history of the disease can increase risk. This risk increases if family member(s) were diagnosed at an early age. My dad was diagnosed in his early 70s, my younger brother when he was 60 and me when I was 63.

Your PSA is low and the suspicious lesion is small, which is good.

You're bound to feel fragile and anxious, especially as you're younger than most of us old fogies.

Try not to worry and just take one step at a time. You'll find lots of help and support on here.

Best of luck mate.

User
Posted 27 Sep 2024 at 19:31

As you say, 3mm is very small.  Mine was 13mm and that's diameter so the volume is much bigger, 10 times.

I was pleased it was found. I'd think you've a lot if options.

 

User
Posted 12 Oct 2024 at 08:56

Sorry to hear you and your family are going through this mate. I’m slightly ahead of you on the journey and everything you are describing feeling sounds really familiar. It’s a tough thing to deal with when it’s comes out of the blue like this in your 40s but keep going and you will get through it.
Your family history, diagnosis and staging all sounds similar to mine. One thing that helped me was getting a second opinion, the consistency in the messaging around risk and treatment got me to a point I could make a decision to go for surgery. Mentally I started to feel better once I had a confirmed treatment plan and that’s something I’ve read others feel also. Re the scans I was also told no PET scan and they were confident to stage me from PSA, MRI and Biopsy.

I’d also recommend contacting the specialist nurses here, they can help you understand the medical side but also get the mental aspect.

All the best mate.

User
Posted 12 Oct 2024 at 13:14
If your cancer looks to be Prostate contained they may see no reason for a PSMA scan. You now need to decide whether you choose one of the ways of administering RT or Surgery that are available to you. This decision is usually left to the patient as there are pros and cons to each treatment and many reasons why a patient would take one over the other.
Barry
User
Posted 12 Oct 2024 at 14:02
You should be happy you have dodged a bullet thanks to that trial. Low PSA cancers are often more aggressive and 1cm across is not a small prostate tumour.

Given your young age they will probably nudge you towards surgery. Given your young age that would be my preference if I was you too.

User
Posted 12 Oct 2024 at 21:27

I was 52 when diagnosed. Yes it is a shock that you have something that many associate with older people. But good that they have found it. I was given a very large nudge to surgery. They said It's all about age, you can get over the surgery quicker, further treatment (salvage RT) that you might need when you are older may have better outcomes for surrounding tissues and organs given it will be the first time it's administered.

User
Posted 17 Dec 2024 at 16:57
Usually when starting peeing and then it disappears mid flow.

Phoned the hospital CNS who was its fine if it doesn't continue for the whole flow.

Will continue to monitor

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User
Posted 27 Sep 2024 at 15:21

Hello mate

I'm sorry that you've had to join us, but welcome to the forum.

I found this link useful when trying to understand my MRI results 

https://prostatematters.co.uk/diagnosis/mri-results/

I'm not medically trained but as far as I am aware the MRI is only an indicator. It's the biopsy that will give full details of anything untoward.

You're obviously aware that a family history of the disease can increase risk. This risk increases if family member(s) were diagnosed at an early age. My dad was diagnosed in his early 70s, my younger brother when he was 60 and me when I was 63.

Your PSA is low and the suspicious lesion is small, which is good.

You're bound to feel fragile and anxious, especially as you're younger than most of us old fogies.

Try not to worry and just take one step at a time. You'll find lots of help and support on here.

Best of luck mate.

User
Posted 27 Sep 2024 at 17:18
Thanks Adrian
User
Posted 27 Sep 2024 at 19:31

As you say, 3mm is very small.  Mine was 13mm and that's diameter so the volume is much bigger, 10 times.

I was pleased it was found. I'd think you've a lot if options.

 

User
Posted 08 Oct 2024 at 09:33

Follow up.

Unfortunately as i suspected, this wasn't inflamation.

Gleason 3 + 4, 9 of 12 positive cores

T2 N0

PSA 1.27, PSAd 0.05

3mm lesion with equivalent foci in the left apex

Maximum cancer length 10mm.

To say that my and my families mental health has taken a knock is to make a significant understatement.
All of this considering such a low PSA and being aged 48 is pretty unfortunate but what can i do.

The only options i have been given is RARP or Radiotherapy.

I have asked for a second opinion, but it would appear i have few choices.

 

User
Posted 08 Oct 2024 at 10:19

Hello mate.

I'm sorry to hear that they confirmed Pca. 

You mention that your lesion is 3mm, and later, that your maximum cancer length was 10mm. Are you sure that the latter measurement is relating to the tumour and not to the maximum length of the cores taken?

Looking at things positively. They've found your tumour early, it is small, a low grade, and contained within the capsule. Your PSA is low.

I would have thought that they'd have offered active surveillance, but maybe the 9 out of 12 cores being positive, or the exact position of the lesion, or your family history of the disease has ruled this out.

The decision on what treatment to take is not easy. There is a new treatment of radiotherapy that is only 5 sessions, if this had been available to me when I was diagnosed I'd have probably taken it. Some suggest that surgery is a better option for younger blokes.

Whatever treatment you chose I wish you and your family all the best.

Edited by member 12 Oct 2024 at 08:58  | Reason: Typo

User
Posted 08 Oct 2024 at 13:14

Thanks Adrian.

Not sure to be honest.
The unclear letter states maximum cancer length of 10mm, total cancer length 82mm (which i assume is all of the cores added together)
I think what has ended up happening is they found a 3mm lesion on one side and the "equivalent foci" was another lesion on the other side (i vaguely remember 5mm).
It doesn't say that definitively on the letter however.

They keep refusing to do PSMA PET scan, with the justification that i am low risk.
Every little twinge is now terrifying and i cannot escape the worry that poking a cancer with sharp needles could cause things to spread.

 

Edited by member 09 Oct 2024 at 09:59  | Reason: typo

User
Posted 12 Oct 2024 at 08:56

Sorry to hear you and your family are going through this mate. I’m slightly ahead of you on the journey and everything you are describing feeling sounds really familiar. It’s a tough thing to deal with when it’s comes out of the blue like this in your 40s but keep going and you will get through it.
Your family history, diagnosis and staging all sounds similar to mine. One thing that helped me was getting a second opinion, the consistency in the messaging around risk and treatment got me to a point I could make a decision to go for surgery. Mentally I started to feel better once I had a confirmed treatment plan and that’s something I’ve read others feel also. Re the scans I was also told no PET scan and they were confident to stage me from PSA, MRI and Biopsy.

I’d also recommend contacting the specialist nurses here, they can help you understand the medical side but also get the mental aspect.

All the best mate.

User
Posted 12 Oct 2024 at 13:14
If your cancer looks to be Prostate contained they may see no reason for a PSMA scan. You now need to decide whether you choose one of the ways of administering RT or Surgery that are available to you. This decision is usually left to the patient as there are pros and cons to each treatment and many reasons why a patient would take one over the other.
Barry
User
Posted 12 Oct 2024 at 14:02
You should be happy you have dodged a bullet thanks to that trial. Low PSA cancers are often more aggressive and 1cm across is not a small prostate tumour.

Given your young age they will probably nudge you towards surgery. Given your young age that would be my preference if I was you too.

User
Posted 12 Oct 2024 at 21:27

I was 52 when diagnosed. Yes it is a shock that you have something that many associate with older people. But good that they have found it. I was given a very large nudge to surgery. They said It's all about age, you can get over the surgery quicker, further treatment (salvage RT) that you might need when you are older may have better outcomes for surrounding tissues and organs given it will be the first time it's administered.

User
Posted 10 Dec 2024 at 17:20

Thank you all who provided me with feedback

I have now had my nerve sparing, retzius sparing RARP in the last week.
Today i travelled back to London to have the catheter removed.

The London cancer hospital that treated me were fantastic when i was in, and i couldn't have wished for nicer and more caring staff.

I'm now trying to recover and being cautiously hopeful for the PSA test in January.

The soreness following the operation in the Perineum and abdomen were not as bad as i had thought they might be and were manageable with pain killers.

The catheter was horrendous though, so painful and uncomfortable especially at night and the indignity i felt having to carry and empty that overnight bag in the dark was something i hope i never have to go through again.

Thanks all

User
Posted 17 Dec 2024 at 16:19

Quick question to all who have had surgery, how long did you continue to have blood in your urine for following surgery?

I'm now exactly 2 weeks after surgery and its still happening.
Spoke to my Prostate CNS today who has re-assured that it should be fine, but its a worry and also i wouldn't fancy it happening at a cubicle 😐

Also i'm fully continent except if there's any need to let gas escape 😚

Coughing and sneezing are fine, but farting means leakage.

Maybe i just have to avoid anything that makes you windy??

User
Posted 17 Dec 2024 at 16:30

Hertsman, depends how much blood we are talking about. I was still passing traces of blood at least six weeks after surgery. Blood when stopping or starting the urine flow is often reported. 

Doing too much can also cause a bit of blood in the urine. 

You have done the right thing contacting your prostate nurse. If I had got bright red blood coming out of my  penis, then I would seek medical advice.

Thanks Chris 

User
Posted 17 Dec 2024 at 16:57
Usually when starting peeing and then it disappears mid flow.

Phoned the hospital CNS who was its fine if it doesn't continue for the whole flow.

Will continue to monitor

 
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