I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Active Surveillance Versus IMRT Without HT?

User
Posted 18 Feb 2024 at 14:21

Almost 24 weeks have passed since my referral.  I see the urology/radio oncologist next week.  I don't know what to expect, but anticipate IMRT + HT or possibly a suggestion of A.S.


I will soon be 78 and am seeking advice/input.


PSA 1.4 in 2018,  13.1 July 23,  14.32 Nov 23.   DRE normal.  Gleason 3+4, 90% of 3 and 10% of 4 on the left and 3+3  1% on the right.  6 of 15 cores positive, only 1 of the 6  positive on the right.  MRI showed 14 mm tumour, and biopsy was 9 mm, 5 mm, and 1.3mm.  No EPE or PNI or cribriform.  Prostate size 36 cc.  Prostate density 0.39.  HOLEP TURP in 2011.


Urologist said T2a NO MO. Grade 2.  When I suggested it should possibly be T2c because of being on 2 sides of the prostate he agreed!   Someone suggested that as the DRE was said to be normal it should be T1c - so I am a little confused.


I have CKD 3b (eGFR 42) and a solitary kidney due to cancer 6.5 years ago.  I was told now 'unlikely' to recur. 


Never smoker, not a drinker.  BMI 26.5.  Physically and mentally fit.  Occasional ectopics.


I absolutely don't want HT due to CKD and all the other side effects.  At a push I would very reluctantly consider 4 months of HT if it was to achieve the possibility of a cure and the avoidance of permanent HT down the road.


Given my profile and stats what is the opinion on A.S. or IMRT without HT?


Should I grasp the nettle and opt for 4 months HT and would that be sufficient?


Would higher and/or longer IMRT be necessary if no HT.  Only IMRT available to me in my NHS region.  I was refused brachytherapy due to previous HOLEP and margins.


Thanks


Jonal

User
Posted 18 Feb 2024 at 20:24
Hi Adrian

I had previously read your bio and your discussion about T2c. I had hoped that thread would continue.

It is important to get the correct staging in order to discuss appropriate treatment, but they seem to have confused things even more than it was previously.

Like your situation, I believe the MDT continued with T2a.

Jonal
User
Posted 19 Feb 2024 at 14:35
Hi Adrian

Did you make any further progress on the T2c staging classification conundrum?

I have my first consultation with the oncologist on Wednesday, and I am still confused.

I don't know if you looked at the D'Amico risk classification system, which is widely referred to online. I looked at it today and it says T2c is High Risk with a more than 50% chance of recurrence

The crucial variable in the nomogram is having PCa on both sides. A lower psa level does not appear to make a difference. Like you, I have just a tiny focus of PCa on the right side, ie 1 out of 6 cores, 1% at 3+3 and a 1.3 mm tumour. The urologist dismissed this and classified me as T2a. The MDT appears to have concurred. When I queried this and said I should surely be T2c, he acquiesced. Like your situation, A.S. had been dropped into the conversation a few times.

This is a tad worrisome because they classified me as intermediate risk. As you discovered this can affect treatment decisions and possible time to treatment. For me, this means no PSMA - PET scan. It has also taken 24 weeks from referral to just get to the treatment discussion stage.

This classification of T2c is quite concerning and could lead to significant risks and undertreatment! I don't want to take HT, but I am worried about the consequences.

I am still seeking input on HT or no HT with my stats.

Jonal
Show Most Thanked Posts
User
Posted 18 Feb 2024 at 19:15

Originally Posted by: Online Community Member
Urologist said T2a NO MO. Grade 2.  When I suggested it should possibly be T2c because of being on 2 sides of the prostate he agreed!


That doesn't inspire me with confidence. The new CPG staging does not distinguish between T2a, T2b and T2c they are all grouped as T2, contained within the prostate. Please read my thread on AS and T2c disease.


https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance


 

Edited by member 18 Feb 2024 at 19:18  | Reason: Additional text

User
Posted 18 Feb 2024 at 20:24
Hi Adrian

I had previously read your bio and your discussion about T2c. I had hoped that thread would continue.

It is important to get the correct staging in order to discuss appropriate treatment, but they seem to have confused things even more than it was previously.

Like your situation, I believe the MDT continued with T2a.

Jonal
User
Posted 19 Feb 2024 at 14:35
Hi Adrian

Did you make any further progress on the T2c staging classification conundrum?

I have my first consultation with the oncologist on Wednesday, and I am still confused.

I don't know if you looked at the D'Amico risk classification system, which is widely referred to online. I looked at it today and it says T2c is High Risk with a more than 50% chance of recurrence

The crucial variable in the nomogram is having PCa on both sides. A lower psa level does not appear to make a difference. Like you, I have just a tiny focus of PCa on the right side, ie 1 out of 6 cores, 1% at 3+3 and a 1.3 mm tumour. The urologist dismissed this and classified me as T2a. The MDT appears to have concurred. When I queried this and said I should surely be T2c, he acquiesced. Like your situation, A.S. had been dropped into the conversation a few times.

This is a tad worrisome because they classified me as intermediate risk. As you discovered this can affect treatment decisions and possible time to treatment. For me, this means no PSMA - PET scan. It has also taken 24 weeks from referral to just get to the treatment discussion stage.

This classification of T2c is quite concerning and could lead to significant risks and undertreatment! I don't want to take HT, but I am worried about the consequences.

I am still seeking input on HT or no HT with my stats.

Jonal
User
Posted 19 Feb 2024 at 14:50

Originally Posted by: Online Community Member
Hi Adrian

Did you make any further progress on the T2c staging classification conundrum?


Hi Jonal.


I put my query to NICE. Their reply that was as clear as mud. It basically said that they deemed T2c high risk, but when they converted to CPG, T2c disease was CPG 2, low risk. You work that one out. One day its deemed not suitable for AS the next it is.


I attach a link so you can read the exact points I put to them and their full reply.


https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance

User
Posted 19 Feb 2024 at 15:08
Hi Adrian

Yes, I read that quite carefully, and as you say 'clear as mud'!

Did Ian get any further with his questioning of the medics?

I fear I am in a 'Catch 22' situation. I will ask for my staging to be reclassified from T2a to T2c, which may prove difficult given the confusion. At the same time, I had hoped to argue for no HT!

It seems that individual classification is not quite as rigorous and intelligent as we thought it was, and as such, how can we put our faith in the system or indeed the medics who interpret for us?

I believe that with the CPG classification, I am CPG-3! - Yet A.S. was being referred to!

Jonal
 
Forum Jump  
©2024 Prostate Cancer UK