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Confused & getting anxious

User
Posted 18 Feb 2022 at 14:56

Hi

Firstlh, thank you all for contributing to this community forum it makes you realise. I'm not alone!

I'm 70 but still fit and very active. 

I saw my GP in November : symptoms going to toilet more often up to 5 times a night ect. I had back and hip pain but prompt to see GP  was loss of weight 2 1/2 stone over short period  without trying. Initially I put down to having stopped drinking (alcohol) but some told me they had been diagnosed with cancer following similar weight loss. 

GP took serious sent me for PSA the same day. The results came back after a couple of days with a score of 39.  GP referred me to urology & my life changed. Bone scan, MRI & Colonoscopy (the result of sample GP asked for which caused concern). I was/am amazed how much was arranged & happen in the month or so after I went to GP. 

Results. PSA- 39, Bone scan - clear with no sign metastatic disease, Colonoscopy- clear, MRI- showed no speed outside of prostate, but suspicious signs of PC. All of these results came just after Christmas. The MIR results led to biopsy in mid January. This unfortunately confirmed PC. Cancer found  with "maximum single core I involvement of 100%" in all 32 samples taken! This was graded as Gleason 3+4=7, grade Group 2, T2

I had a PSMA PET-Scan last Friday & will get the results on 22 February.

My confusion is, am I right in thinking that "Cancer found  with maximum single core involvement of 100% in all 32 samples taken' means that my whole prostate is cancerus (not sure that's a word!) and if so does that limit my treatment options to surgery? 

Am I also right in thinking that the Gleason score is to do with the type of cancer cells & not the spread of the cancer?

I realise that if the PET-scan find the cancer has spread that's a whole different ball game & not one aIm allowing myself to consider at the moment!!

Thanks so much for any light you can shine on this 

best wishes to all facing up to this terrible disease.

 

User
Posted 18 Feb 2022 at 15:49
It means that all the samples taken were cancerous, but they take samples from where the MRI scan shows there to be areas of concern, so that's not terribly surprising.

I was in a similar situation myself in 2018. PSA of 32 and every core cancerous, G3+4. In my case the strong recommendation was RT/HT because there was felt to be a significant likelihood of undetectable spread into the lymph nodes, so I had "whole pelvis" RT which (hopefully) zapped everything. Three years after RT and everything's fine.

Not really a "terrible disease"; more a natural part of the ageing process for a man. I didn't find treatment too awful. You get it sorted and you get on with life.

All the best,

Chris

User
Posted 18 Feb 2022 at 16:59

Thanks Chris that's reassuring & brought me back to reality, although, not sure about it not being terrible, I could certainly do without it 😎

Edited by member 18 Feb 2022 at 17:02  | Reason: Not specified

User
Posted 18 Feb 2022 at 19:49
Just to add a little in answer to your questions. The amount of cancer found in your Prostate does not rule out RT but if samples taken are indicative of extensive presence a Prostatectomy may be better option. It will be interesting to know what PSMA scan suggests.

The Gleason score is assessed and given a figure based on far the cancer cells have mutated from normal cells. 3 is less changed with 5 the highest. The figure for the greatest number of cancer cells is given first and this is then added to the figure for the lesser number of cells to give the total Gleason score.

Barry
User
Posted 18 Feb 2022 at 23:47

Originally Posted by: Online Community Member
am I right in thinking that "Cancer found with maximum single core involvement of 100% in all 32 samples taken' means that my whole prostate is cancerus (not sure that's a word!) and if so does that limit my treatment options to surgery?

Am I also right in thinking that the Gleason score is to do with the type of cancer cells & not the spread of the cancer?

 

No - it suggests that they took 32 samples from the area of suspicion seen on your MRI and all were cancerous - as said above, that isn't a huge surprise. What might limit your treatment options is if the cores that had a lot of cancer in them are close to the edge of the gland, rather than how much cancer was in them. If it is close to or already breaking out of the gland, that might rule out surgery. 

As explained by Barry, the Gleason just describes how distorted the cells are. The type of cancer is usually adenocarcinoma although there are at least 26 other types of prostate cancer. Your diagnosis letter should say adenocarcinoma somewhere on it? The spread of the cancer is described using TNM - e.g. T2a N0M0 means contained in the gland with no metastases and no lymph node involvement while T2a N1 M1b would mean contained in the gland with spread to lymph nodes and bone.

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

User
Posted 19 Feb 2022 at 14:29
No mention of adenocarcinoma. Does however say T2a NOMO.
User
Posted 19 Feb 2022 at 14:33

Had call from specialist nurse last night to say MDT have received results of PET-scan which was all clear. Greatly relieved. I'd convinced  myself it had spread.

Edited by member 19 Feb 2022 at 14:34  | Reason: Not specified

User
Posted 19 Feb 2022 at 14:42
Great news, Les. With a PSA in the 30s like yours (and mine) it's a very legitimate concern. I well remember the huge relief I felt when I found that my bone scan was negative. Merits a celebratory cup of tea!

Cheers,

Chris

User
Posted 20 Feb 2022 at 08:13

PSMA clear no signs of spread!

User
Posted 20 Feb 2022 at 11:33

Originally Posted by: Online Community Member
No mention of adenocarcinoma. Does however say T2a NOMO.

T2a means it's only present in one quarter of the prostate, N0 means no local lymph node involvement, and M0 means no metastasis to other organs.

This probably means you have most treatment options open to you, except Active Surveillance, and your PSA may rule out focal therapies.

User
Posted 20 Feb 2022 at 16:07
Thanks Andy. I'm meeting consultant 2/3 & have been told I'll then have appointment with oncologist. At what stage will I need to make a decision about treatment before or after I see the oncologists ? Not too sure what the role of the oncologists is?
User
Posted 20 Feb 2022 at 16:36
The urologist will discuss surgical options with you, and the oncologist will discuss non-surgical treatment (radiotherapy). You’ll be asked to make a decision after you’ve seen both.

Best wishes,

Chris

User
Posted 20 Feb 2022 at 17:01
Thanks Chris that makes sense .

Les

 
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