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

Notification

Error

cic claim

Email this conversation Print this conversation
User
Posted 15 Dec 2017 at 14:38

I was diagnosed 6th November aged 47, my father died aged 57 from prostate cancer he was diagnosed at 55 but had left it too late and it had spread. I had my psa levels , mri and biopsy and the score was Gleason 7 T2 then the hospital downgraded it to a 6.T2 I have 2 tumours in one side,  I was then referred to another hospital and 3 consultants from the QE in Birmingham said it was a Gleason 7 T2 and was sent this notification in letter form. I have placed a claim with with my insurers who now want details of the Gleason, the magic number is 7 and im so worried that the " downgrading" of my cancer has caused problems. my consultant said it shouldn't have been downgraded as the worst scenario should be taken so correct treatment offered. Im having full removal 29th Dec 2017. wondered if any one else had experienced anything like this , thanks

User
Posted 15 Dec 2017 at 16:53

Hello smudge1605 and welcome.

Would you know how your Gleason of 7 was made up ie 3+4 or 4+3 ?

It makes a bit of difference if the first number is the lower one.

I can't answer the question re an insurance claim as I'm not sure how the "downgrading" of your cancer can affect an insurance claim. You either have cancer or you don't. What is the insurance claim for if you don't mind me asking?

It's  true that consultants would normally upgrade rather than downgrade a biopsy result, often after the operation for removal when they can see exactly what the situation was so it does seem a little strange that your Gleason would have been reduced, quite a bit I feel, from 7 to 6.

Before you opted for the operation, were you offered advice as to what other treatment path was available to you?

With a Gleason of 6 or 7 (3+4) and no spread, I would have thought you would be a good candidate for Active surveillance.

Hopefully somebody else will be along to advise you too

 

Edited to say I have now seen your other post so realise you are talking about CIC.  As I believe the magic number is 7 then I can see why you are worried if the lower Gleason was six.

You just need to get the last consultants you saw to ppy their paperwork which in their opinion states Gleason of 7 or wait until after the operation when in may well be upgraded anyway.

Edited by member 15 Dec 2017 at 17:03  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 15 Dec 2017 at 23:14

The Gleason score is a judgement made on the extent that normal cells have mutilated and become cancerous ones and is based on what has been sampled in cores which is not necessarily truly representative of what is actually in the Prostate. After prostatectomy where the Gleason score differs from biopsy it is more often upgraded to a higher figure rather than downgraded. So when the post op Prostate is examined in the lab a more accurate assessment should be made but even then some might interpret it a little differently.

Barry
User
Posted 17 Dec 2017 at 20:49

If I can get this to print, this portion from another forum illustrates what I said on 15th December 2017 about differing assessments


Us TOO International Prostate Cancer Education & Support Network
Prostate Cancer
Us TOO prostate cancer support group & discussion community
Start a Post (Discussion or Journal)
Community home
Explore 226 communities

Inspire
Prostate Cancer
Treatment options

A Cautionary Tale about Pathology Reports
BleepCancer's Avatar BleepCancer
Add as FriendMessage

Yesterday at 3:36 pm 7 replies Shared with the public

Follow Post Email Post Problem?

Sometimes the medical professional with the minority opinion is correct.

In 2012, my psa reaches 6.9, so urologist finally ordered a biopsy. The pasthologist teported Gleason 3+4=7 which, at age 53, would indicate need for immediate treatment. The pathologists report was one page long and included detailed descriptions of his findings.

But like a good patient, I sought a second opinion from the suppossed best pathologist in town. His report simply said 3+3=6, one line., which would make active surveillance an option.

When the first pathologist saw the second pathologists report, he rebutted it with a full two page report of mostly medical jargon I couldn’t understand. My doctor believed the second report because of that pathologist’s reputation. I was more inclined to believe the first simply because the first pathologist provided so much detail.

So we sent the slides to Johns Hopkins (the suppossed know all and be all of PCA) for a tie breaker. Their pathologists report was also one line: 3+3=6. No further detail. Neither the second or third pathologist provided any detail or attempted to rebut the first pathologist, so I still tended to trust him and was inclined to start immediate treatment. But it was two medical professionals against one, so as a layman and against my better judgement, I opted to try active surveillance. We even went vegan.

Well, the first pathologist was correct, and during a year of active surveillance I went to PSA of 8.9, second biopsy done in 2013 by yet another lab came back as 4+3=7, with spread to both lobes. My urologist still wanted to continue a few more months of active surveillance because he had also tried some new genetic test which indicated I was low risk. I fired him that day.

I contacted a specialist in urologic oncology and told him my tale. I had an appointment in a week, a bone scan and MRI a week later, and a month later, radical prostatectomy (my choice). Post surgery path report showed Gleason 3+5=8 with tertiary grade four and extrprostatic extension.

Ten months later, PSA started rising again, so eight weeks salvage radiation got my PSA to undetectable level, but that only lasted for 15 months. Now I am on androgen deprevation therapy for life.

It’s water under the bridge now, but I sometimes have to wonder if Iwould be cancer free now if I had gone with my gut, trusted the first pathologist, and started treatment a year earlier.ec in terms of differences of opinion.

Barry
Show Most Thanked Posts
User
Posted 15 Dec 2017 at 16:53

Hello smudge1605 and welcome.

Would you know how your Gleason of 7 was made up ie 3+4 or 4+3 ?

It makes a bit of difference if the first number is the lower one.

I can't answer the question re an insurance claim as I'm not sure how the "downgrading" of your cancer can affect an insurance claim. You either have cancer or you don't. What is the insurance claim for if you don't mind me asking?

It's  true that consultants would normally upgrade rather than downgrade a biopsy result, often after the operation for removal when they can see exactly what the situation was so it does seem a little strange that your Gleason would have been reduced, quite a bit I feel, from 7 to 6.

Before you opted for the operation, were you offered advice as to what other treatment path was available to you?

With a Gleason of 6 or 7 (3+4) and no spread, I would have thought you would be a good candidate for Active surveillance.

Hopefully somebody else will be along to advise you too

 

Edited to say I have now seen your other post so realise you are talking about CIC.  As I believe the magic number is 7 then I can see why you are worried if the lower Gleason was six.

You just need to get the last consultants you saw to ppy their paperwork which in their opinion states Gleason of 7 or wait until after the operation when in may well be upgraded anyway.

Edited by member 15 Dec 2017 at 17:03  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 15 Dec 2017 at 23:14

The Gleason score is a judgement made on the extent that normal cells have mutilated and become cancerous ones and is based on what has been sampled in cores which is not necessarily truly representative of what is actually in the Prostate. After prostatectomy where the Gleason score differs from biopsy it is more often upgraded to a higher figure rather than downgraded. So when the post op Prostate is examined in the lab a more accurate assessment should be made but even then some might interpret it a little differently.

Barry
User
Posted 16 Dec 2017 at 08:34
Thank you for your reply. We have letter from consultants stating they have regraded based on the biopsy results and it’s a 7 3 + 4 . I have not had my operation yet it’s 29 th December. Consultants stated that due to age and family history that a full removal was best option. Radiotherapy could lead other cancers elsewhere in 15 to 20 years and as I’m only 47 he didn’t recommend it . Active surveillance was an option but having seen my dad die mentally I don’t think I could cope and don’t want to risk it spreading as my dads did in such a short space of time . Once operation is complete they will look at it again anyway. Downgrading isn’t something that should be done as it could affect the treatment offered . The first hospital were useless I didn’t even see one consultant . The QE have been amazing

User
Posted 17 Dec 2017 at 20:49

If I can get this to print, this portion from another forum illustrates what I said on 15th December 2017 about differing assessments


Us TOO International Prostate Cancer Education & Support Network
Prostate Cancer
Us TOO prostate cancer support group & discussion community
Start a Post (Discussion or Journal)
Community home
Explore 226 communities

Inspire
Prostate Cancer
Treatment options

A Cautionary Tale about Pathology Reports
BleepCancer's Avatar BleepCancer
Add as FriendMessage

Yesterday at 3:36 pm 7 replies Shared with the public

Follow Post Email Post Problem?

Sometimes the medical professional with the minority opinion is correct.

In 2012, my psa reaches 6.9, so urologist finally ordered a biopsy. The pasthologist teported Gleason 3+4=7 which, at age 53, would indicate need for immediate treatment. The pathologists report was one page long and included detailed descriptions of his findings.

But like a good patient, I sought a second opinion from the suppossed best pathologist in town. His report simply said 3+3=6, one line., which would make active surveillance an option.

When the first pathologist saw the second pathologists report, he rebutted it with a full two page report of mostly medical jargon I couldn’t understand. My doctor believed the second report because of that pathologist’s reputation. I was more inclined to believe the first simply because the first pathologist provided so much detail.

So we sent the slides to Johns Hopkins (the suppossed know all and be all of PCA) for a tie breaker. Their pathologists report was also one line: 3+3=6. No further detail. Neither the second or third pathologist provided any detail or attempted to rebut the first pathologist, so I still tended to trust him and was inclined to start immediate treatment. But it was two medical professionals against one, so as a layman and against my better judgement, I opted to try active surveillance. We even went vegan.

Well, the first pathologist was correct, and during a year of active surveillance I went to PSA of 8.9, second biopsy done in 2013 by yet another lab came back as 4+3=7, with spread to both lobes. My urologist still wanted to continue a few more months of active surveillance because he had also tried some new genetic test which indicated I was low risk. I fired him that day.

I contacted a specialist in urologic oncology and told him my tale. I had an appointment in a week, a bone scan and MRI a week later, and a month later, radical prostatectomy (my choice). Post surgery path report showed Gleason 3+5=8 with tertiary grade four and extrprostatic extension.

Ten months later, PSA started rising again, so eight weeks salvage radiation got my PSA to undetectable level, but that only lasted for 15 months. Now I am on androgen deprevation therapy for life.

It’s water under the bridge now, but I sometimes have to wonder if Iwould be cancer free now if I had gone with my gut, trusted the first pathologist, and started treatment a year earlier.ec in terms of differences of opinion.

Barry
 
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