Waiting for a treatment plan

Hi Pura Vida , you seem to have been unlucky with the biopsies being delayed. Fingers crossed that the 29 Nov takes place.  I wonder if it is worth asking your team if they get a cancellation you might be able to be done before then, particularly with your 2 failed attempts?  Maybe everyone is seeing Gleason 6 and there is no rush, but worth mentioning it is giving you stress.  I was unsure why you were marked as Mx do you know?  I hope others will be along shortly to give you their opinions.  David

Hi David,

I asked about a cancelation, but it is unlikely as this is an unusual procedure. I think the surgeon who did the previous biopsy is going be in attendance learning how to do MRI Fusion biopsies while the head of Urology does it. It seems a relatively new technique.

I think I was marked as Mx because I hadn't had a bone scan and CT scan at the time of the (partial) diagnosis. That was back in August and I have heard nothing about the results. I'm due to see my urologist on 7th November, so I imagine I will know then.

My GP put me on anti anxiety meds in September, so he knows I am stressed and he has been in contact with the MDT. Seems not very good patient communication going on here.

Maybe I have to be the squeaky wheel!

Stewart

Hello Pura Vida. The Government target for cancer care in England is that there should be no moe than 62 days from the date of first referral by your GP to the date of starting your first treatment. This is known as the Referral to Treatment time (RTT) Hospitals do struggle to meet this target but we used it as a 'stick' to hurry things along. We also used the hospital Patient Information (sometimes called 'advice') and Liaison Service (PILS or PALS), quoting the RTT. Again, this helped things along. Finally we wrote a formal complaint to the hospital - and got a  pretty useless apology in response. We learned that we had to use every (polite but assertive) means available. As somebody said on here quite sometime ago - those who don't shout don't get!

 Pura Vida , I guess the answer will be that you have been diagnosed already and AS chosen.  Would be nice for you to be involved though!  Assuming you are Gleason 6, waiting till Dec to get a more accurate diagnosis probably isn’t a problem.  It just all adds to stress when you don’t need it.  Good luck, David

My diagnosis took from February until end of June this year ,then urology got it wrong 

Stage 3 gleason 9 

Oncology then told me stage 4 gleason 4+5 =9

It's a lot to do with timing 

Once treatment starts it's like you feel you getting somewhere 

Tried the polite letter one ,got a letter asking if I would kindly be a bit more patient, missed 62 day thing by a country mile ,took 8 weeks to get biopsy results alone.its a lottery 

Hi PV

This doesn't make too much sense to me.

MRI not corresponding with biopsy?

You've had 6 biopsies and looks like Gleeson not moved.

What does the MRI say in terms of tumour (s) sizing and location within gland , how close to edge?

Regards 

Steve 

Hi Steve,

The first 5 biopsies were inconclusive, despite PSA continuing to rise. The 6th one found Gleason 6 cancerous cells in the left and right lobes and marginal anterior bulging. It is 'low' volume whatever that means. The exact wording was 'the Gleason 6 does not correlate with the PI-RADS 5 appearances that have been identified, they (MDT) have recommended he have targeted biopsies of these areas'.

It sounds like they are saying they doubt the Gleason 6 finding and think a significant area was missed in the 6th biopsy. I guess this is why they now want me to undergo this MRI Fusion biopsy which superimposes live ultrasound images onto MRI images to make a more accurate image of the prostate for targeting purposes. I understand this technique was only introduced about 3-4 years ago and costs a lot more than a regular biopsy so is used when someone has had multiple negative biopsies or a doubtful diagnosis. I feel a bit like a guinea pig.

My concern is the length of time in getting this procedure, 5 months, which is 5 months more for the tumor(s) to grow, which may or may not be Gleason 6 low grade cancer. Its rubbish not knowing. It would be nice if someone said, we think it's not a cause for concern as it is slow growing, but we're not really sure, so we'll string you along for a few months until we can try out this new technique, which takes a long time to schedule and only a few people can do it.

I don't think its going to change my mind about having surgery, if the time is right. I have effectively been on active surveillance for 6 years and I'm fed up with it. I want to get treated.

Best wishes

Stewart

Hmmmm 

Does sound a weird one, they keep going on about biopsies, It's MRI that will show any spread, try and find out what the tumour (s) size is in mm and how it's grown over the years from previous Mris.

To give an example one of my tumours grew from 3mm  to 13 mm in 4 years, that tells us quite a bit.

I only had one biopsy. during that 4 years.

Ok, they're the experts and have all the info, perhaps I'm missing something.

Ps, can't see a PSA for 2024

All the best

Steve