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I told my cousin about my problem

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User
Posted 25 Jul 2018 at 09:16

When I was diagnosed with prostate cancer I was asked if I had any sons as I should warn them about the possibility of the cancer being genetic. I don't have any sons but I thought I should tell my 2 male cousins, being my nearest male relatives.


One of them followed up the warning with a visit to his doctor and was also diagnosed. I've just received this email from him:


"There it was gone😋


Had it removed so just walking round the house waiting for things to heal up and my innards trying to get back to where they used to be 
feels like they are arguing who goes where but pain free and I’m alive and that’s all that matters.
I think you might just have saved my life Bill with that email "

Wow! Please tell your male relatives!
User
Posted 25 Jul 2018 at 09:16

When I was diagnosed with prostate cancer I was asked if I had any sons as I should warn them about the possibility of the cancer being genetic. I don't have any sons but I thought I should tell my 2 male cousins, being my nearest male relatives.


One of them followed up the warning with a visit to his doctor and was also diagnosed. I've just received this email from him:


"There it was gone😋


Had it removed so just walking round the house waiting for things to heal up and my innards trying to get back to where they used to be 
feels like they are arguing who goes where but pain free and I’m alive and that’s all that matters.
I think you might just have saved my life Bill with that email "

Wow! Please tell your male relatives!
User
Posted 25 Jul 2018 at 15:25
Good news for your cousin Bill and the advice to raise awareness is solid advice. However, important to be clear that the indicators for genetic disposition to prostate cancer are a) being diagnosed young (in your 50s or younger) b) having a father or sibling diagnosed young c) having a parent, grandparent or siblings diagnosed young with breast cancer or other hormone-related cancer. Less than 5% of prostate cancers are thought to be genetic; environmental factors such as the food you ate as children, the water you drank, the air you breathed and the lifestyle are thought to be much more significant in terms of familial or geographic clusters

In fact, about 60% of men in their 60s have some cancer in their prostate although many will never know or need treatment. Many doctors choose not to have PSA tests, including some urologists.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jul 2018 at 15:47

My brother was diagnosed with  PCa Gleason 7 and his GP told me to see my GP and ask for a PSA test. I phoned my surgery and they gave me an appointment with a locum the same day (normal wait is 3 weeks). She insisted on doing a DRE as well as doing the blood test that afternoon. She didn't like the result of the DRE and before I left the surgery she had made an appointment at the hospital in 5 days time.


Turned out to be a Gleason 9 T3b but I was unaware of any symptoms. It pays to let relatives know.

Edited by member 25 Jul 2018 at 15:48  | Reason: Spelling error

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User
Posted 25 Jul 2018 at 12:39

I agree, but I advised my identical twin brother to have his PSA checked.


The GP advised him not to bother, because a positive figure might lead to other investigations such as MRI scans and biopsies, and they might be negative, causing unnecessary worry.


And no, I don't understand the logic either. I guess the approach was inactive surveillance.


 


 


 

User
Posted 25 Jul 2018 at 12:46

I see Prostate Cancer UK have a view on it!


https://prostatecanceruk.org/about-us/news-and-views/2016/3/my-gp-wouldn-t-give-me-a-psa-test-three-months-later-i-was-diagnosed-with-advanced-disease

User
Posted 25 Jul 2018 at 14:31

Originally Posted by: Online Community Member


I agree, but I advised my identical twin brother to have his PSA checked.


The GP advised him not to bother, because a positive figure might lead to other investigations such as MRI scans and biopsies, and they might be negative, causing unnecessary worry.


And no, I don't understand the logic either. I guess the approach was inactive surveillance.


 


 


 



What a stupid GP, all for the sake of an £8 blood test (which could be incorporated into a more comprehensive general health test using the same test tube, and thus cost less).


I estimate my cancer has cost the NHS around £20,000 so far, and now there is costly ongoing treatment to look forward to, much of which could have been avoided with an earlier diagnosis.


Looks like inactive surveillance (or don’t give a f***) is the way to go!

User
Posted 25 Jul 2018 at 15:25
Good news for your cousin Bill and the advice to raise awareness is solid advice. However, important to be clear that the indicators for genetic disposition to prostate cancer are a) being diagnosed young (in your 50s or younger) b) having a father or sibling diagnosed young c) having a parent, grandparent or siblings diagnosed young with breast cancer or other hormone-related cancer. Less than 5% of prostate cancers are thought to be genetic; environmental factors such as the food you ate as children, the water you drank, the air you breathed and the lifestyle are thought to be much more significant in terms of familial or geographic clusters

In fact, about 60% of men in their 60s have some cancer in their prostate although many will never know or need treatment. Many doctors choose not to have PSA tests, including some urologists.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jul 2018 at 15:31

Originally Posted by: Online Community Member


I agree, but I advised my identical twin brother to have his PSA checked.


The GP advised him not to bother, because a positive figure might lead to other investigations such as MRI scans and biopsies, and they might be negative, causing unnecessary worry.


And no, I don't understand the logic either. I guess the approach was inactive surveillance. 



 


Doctors like these should be hung, drawn and quartered. Our local GP (not the one we are registered with) refused our friend Chris a PSA test even though his dad died young from undiagnosed PCa. The same GP missed my mum’s brain tumour and referred her to a psychiatrist even though there is a known brain tumour gene in the family. GPs are so named because they have a general medical knowledge and are not specialists in anything. Even so, there are clear guidelines for GPs on PSA testing and prostate health ... is it really so much to ask to expect them to bloody well follow the guidance?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jul 2018 at 15:47

My brother was diagnosed with  PCa Gleason 7 and his GP told me to see my GP and ask for a PSA test. I phoned my surgery and they gave me an appointment with a locum the same day (normal wait is 3 weeks). She insisted on doing a DRE as well as doing the blood test that afternoon. She didn't like the result of the DRE and before I left the surgery she had made an appointment at the hospital in 5 days time.


Turned out to be a Gleason 9 T3b but I was unaware of any symptoms. It pays to let relatives know.

Edited by member 25 Jul 2018 at 15:48  | Reason: Spelling error

User
Posted 25 Jul 2018 at 19:37
Our (soon to be 47 year old )son was made aware that he needed to be checked out and he was although his GP didn't really think there was much cause for concern and so my son is very laid back about it.

His younger sister (our daughter) had aggressive bowel cancer and was told that she must have had it 10 years plus and it probably started as a polyp that went bad. He did get checked because I nagged and he also had a small polyp removed but he still doesn't get het up about it

His son, my oldest grandson, not only has his paternal grandad having had PC, his mother had aggressive breast cancer and his maternal grandmother died of ovarian cancer. He is also on the Autism spectrum as a high functioning Aspergers and suffers from depression for which he has to take medication.

How do I get my son to warn him without adding extra stress into the equation?
We can't control the winds - but we can adjust our sails
User
Posted 29 Oct 2018 at 05:51

For reasons I can’t adequately explain I visited my GP in July and asked to be tested for PCa.  Interestingly he did initially challenge this - was I sure i wanted the test, many false positives etc.  found this slightly odd, but persevered.  DRE (no sign) led to a PSA test (8) led to an MRI, led to a biops, led to a positive diagnosis. 


Since then I have been telling everyone I know to get checked out.  I simply do not understand why any GP would counsel against getting tested. 


There was a piece on radio 4 earlier in the year when two ‘experts’ were arguing the merits of screening for all men over the age of 50.  I seem to recall the case against  around the unreliability of the PSA test.  This is Bonkers Surely just a high PSA leads you to the next step, and ultimately a biopsy which is absolut. 


Seems to me there is a long way to go raising awareness for this disease.   Particularly among GPs oddly


 


 

User
Posted 29 Oct 2018 at 06:41
Since being diagnosed I have been evangelical about PSA testing. Three guys in their fifties down the pub at my behest went to their separate GPs asking for PSA tests, all were asked: “Have you got any symptoms, etc.? You don’t need one”.

They all insisted and one came back with a raised PSA, fortunately a subsequent MRI found nothing, but he is having regular PSA tests from now on.

Cheers, John.
User
Posted 29 Oct 2018 at 08:53

 


It beggars belief.  Im still new to all this and learning fast, but one thing I have managed to pick up is that by the time you have physical symptoms it’s likely to have already spread. 

 
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