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

Notification

Error

Concerning letter

Email this conversation Print this conversation
User
Posted 11 Oct 2021 at 19:53

I just wanted to step in and say hello and to share my diagnosis with you so I do not feel so alone.

I saw a specialist after a MRI scan and he recommended a biopsy and bone scan which I am waiting for the results. My concerns are that today day I received a letter basically say that my gland volume is 81cc and a highPSA density of 0.46, I know this it not high so may be a typo. It goes on to say that the changes a consistent with T3B disease. He has put nothing else in the letter so I am worried sick.

 

Steve

User
Posted 11 Oct 2021 at 23:08

Hi Steve, 

I’m really sorry I can’t help with any information with regards to the diagnosis…I’m sure someone will reply soon who can help you further.

We had a similar situation when my OH had his MRI. We didn’t receive any information about the results as to whether likely to be cancer or not, just a telephone call from a secretary to book him in for a nuclear bone scan. We literally fell through the floor and I didn’t eat or sleep for 5 days and still had no info. It took for me to call the hospital and completely breakdown….I had a call from consultant within 5 minutes with more information. I would definitely call tomorrow and insist on someone calling you back. It’s the worst part when you don’t know what is going on. Things did get better for us when atleast we knew what was happening.

Hope you can find out soon, and hope things will be ok for you 

User
Posted 11 Oct 2021 at 23:51

Hi Steve

This stage of the diagnostic process is the most stressful. Once you know what you are dealing with it gets easier.

You're 68 so it would have been more of a surprise if you had not had prostate cancer. What is more important is how aggressive it is and until you have a biopsy and a Gleason score, we don't know. Many men live years with a harmless prostate cancer and die of something else.

A prostate size of 81cc is about two to three times average size, but that is of no concern, it is just a big prostate. It is slightly odd that you have been given the PSA density rather than the total PSA, however the density is the more useful figure.

Not having a calculator to hand in my head I calculate your PSA must be about 37 which divided by 81 gives 0.46 ; now a more normal figure for PSA density would be about 0.1 .

So I can see why the specialist thinks it is a high PSA density and presumably the MRI image showed something worth investigating.

We have had people on this site with higher PSA s than you and dodgy looking MRIs who have then been found to be all clear on biopsy. So you may get the all clear, but it is unlikely.

Until you get the biopsy results any idea of what you have got is guess work, and you may as well get Gypsy Rose to read your tea leaves. If I used loose leaf tea I would happily give you a diagnosis, but I use tea bags and I don't know how to read them.

 

 

Dave

Show Most Thanked Posts
User
Posted 11 Oct 2021 at 23:08

Hi Steve, 

I’m really sorry I can’t help with any information with regards to the diagnosis…I’m sure someone will reply soon who can help you further.

We had a similar situation when my OH had his MRI. We didn’t receive any information about the results as to whether likely to be cancer or not, just a telephone call from a secretary to book him in for a nuclear bone scan. We literally fell through the floor and I didn’t eat or sleep for 5 days and still had no info. It took for me to call the hospital and completely breakdown….I had a call from consultant within 5 minutes with more information. I would definitely call tomorrow and insist on someone calling you back. It’s the worst part when you don’t know what is going on. Things did get better for us when atleast we knew what was happening.

Hope you can find out soon, and hope things will be ok for you 

User
Posted 11 Oct 2021 at 23:45
The letter doesn't seem to be telling you anything more than when you saw the specialist after your scan. The scan shows that you have a large prostate- that in itself doesn't indicate cancer as it could just be enlarged because of your age. The scan has also picked up an area of concern that may have escaped onto the outside of the gland - the biopsy will have been targeted at the suspicious area. The scan results are a concern but knly a biopsy can confirm that it is indeed cancer.

Your PSA density of 0.46 is a calculation of how your PSA compares with the size of your prostate - it seems that your PSA reading was around 38?

Basically, you still don't know whether or not you have cancer. More waiting, I am sorry to say.

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

User
Posted 11 Oct 2021 at 23:51

Hi Steve

This stage of the diagnostic process is the most stressful. Once you know what you are dealing with it gets easier.

You're 68 so it would have been more of a surprise if you had not had prostate cancer. What is more important is how aggressive it is and until you have a biopsy and a Gleason score, we don't know. Many men live years with a harmless prostate cancer and die of something else.

A prostate size of 81cc is about two to three times average size, but that is of no concern, it is just a big prostate. It is slightly odd that you have been given the PSA density rather than the total PSA, however the density is the more useful figure.

Not having a calculator to hand in my head I calculate your PSA must be about 37 which divided by 81 gives 0.46 ; now a more normal figure for PSA density would be about 0.1 .

So I can see why the specialist thinks it is a high PSA density and presumably the MRI image showed something worth investigating.

We have had people on this site with higher PSA s than you and dodgy looking MRIs who have then been found to be all clear on biopsy. So you may get the all clear, but it is unlikely.

Until you get the biopsy results any idea of what you have got is guess work, and you may as well get Gypsy Rose to read your tea leaves. If I used loose leaf tea I would happily give you a diagnosis, but I use tea bags and I don't know how to read them.

 

 

Dave

User
Posted 12 Oct 2021 at 08:02

Thank you all I am waiting for the nurse to call me back today. Hopefully will be able to get some more information..

User
Posted 13 Oct 2021 at 10:18

Originally Posted by: Online Community Member

Until you get the biopsy results any idea of what you have got is guess work, and you may as well get Gypsy Rose to read your tea leaves. If I used loose leaf tea I would happily give you a diagnosis, but I use tea bags and I don't know how to read them.

They say laughter is the best medicine, well I could not help but chuckle out loud at this!

Thank you Dave.

User
Posted 13 Oct 2021 at 10:43

This is my first post on here having been watching the posts for three months, I am 5 weeks into hormone therapy with little in the way of side affects which is good.

Your density reading is not too bad, my PSA was 47 and prostate volume of about 37 (from what I remember). My density reading was 1.1.

 

I am waiting for a PSA reading at the moment, I would like to think it is vastly reduced, I try hard not to worry on facts and harder still on the possibilities (side affects ). I hope you get some more information soon so that you know what you are dealing with.

 

 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK