NFR Prostate Cancer

[southwest6]

Thanks to your post Sunbury i've just scheduled an appointment at the Urologist. Because i'm 28 and have a very active lifestyle, I dupe myself into thinking I won't get cancer anytime soon. Given the evidence, I know it's a totally irrational belief to hold. I even have a step mum who - in her early 40s - is dying from colon cancer; it seems unlikely that she will make it through the year, so will be spending a lot more time in London to support the family, and if/when  she passes (barring a miracle), I will move back to London to support my father and my siblings who are 8 and 10 years old. It's the first time we've dealt with cancer so close in the family & my heart really goes out to everyone who's fighting/fought it. Hats off to all of you.

Tangentially, i just finished a book called ''Ultra Processed People'' by Chris Van Tulleken. He also has a great 1hr documentary on BBC called 'Irresistable Food'. It's completely changed the way I look at food and what I choose to put inside my body. I mention it because there is a growing body of evidence suggesting that various ultra processed foods (which constitute something like 70pc of the average british persons diet) could lead to various cancers, neurodegenerative and psychiatric disorders.

[alfie]

There are a good few people on this Fulham supporters forum that have opened up about their health issues, what is special is that we are one in our support and feel we can discuss openly, I found that out with my minor kidney stone, although for me the pain was horrendous it easily rectified, not so in other cases.
For all those going through these issues i wish you all well.

[sunburywhite]

Hi Southwest 6

I hope your test comes back clear

Please let us know

[gang]

A word about the PSA test. Avoid sex and cycling before the test (seriously). They can cause a temporary spike in the test result.

I wanted to have sex but my wife told me to get on my bike.

[sunburywhite]

Has anyone had tests in the last couple of weeks?

[Somerset Fulham]

A word about the PSA test. Avoid sex and cycling before the test (seriously). They can cause a temporary spike in the test result.

I was told this before mine. Neither were much of a problem for me. 

[Somerset Fulham]

Aside from the above post of mine there is some really brave stuff going on here lads. 

Thank you for sharing and please do let us know how you are all getting on, my PMs are always open by the way, whoever you are if you need a massive ear to shout into.

Its so good that we are finally talking about this across generations and amongst ourselves without the usual responses that we all grew up hearing.

Nice one.

[bunter]

Thank you so much for bringing this up, sunburywhite. A topic very close to my heart given that both my grandfathers died from prostate cancer and my dad has also been diagnosed with it.
Best of luck to you, very brave of you to raise it.

[FFC365]

Has anyone had tests in the last couple of weeks?

I had test results yesterday and my PSA is 0.01, down from 0.02, 6 months ago, both are brilliant. I've been tested for nearly 10 years, 2 years ago my PSA soared and I came in at 4 + 5 on the Gleason scale (that is VERY high) after Radiotherapy and Hormone treatment i am in a good place. The message has to be "get tested" (I am 77 in August)

[gang]

The Gleason scale range goes up from 0 or undetectable to 10. The higher the number the bigger the problem that exists.

[Huxley]

In case anyone is interested. Think private rather than the NHS. The NHS is really good for waiting times if a tumour is detected. Not so quick if for screening. Apart from being a long time Fulham fan I am the UK business manager for a diagnostic genetic testing company, fully accredited lab, world leading. Any diagnostic testing needs to be prescribed by an appropriate physician or genetic counsellor. If healthy and looking for peace of mind, we can do one type of test that looks at the most common markers of hereditary cancer. If there are symptoms or a family history we can do a specific diagnostic test for the suspected cancer type. Also if a tumour has been detected and information is sought on the biology of the tumour to see if there are drugs suitable for your specific DNA, then another type of genetic testing can be done. There are quite a few diagnostic companies like the one I work for. Testing costs between 500 and 1500 GBP for hereditary testing, and 500 and 3000 GBP for tumour analysis. Prices depend on how many genes are looked at as well things like MSI, TMB etc . A private genetic counsellor cost about 200 GBP. Avoid the American DNA testing labs... just gives you information that you have a mutation but not if it is relevant, and then go on and sell your data

We all have huge amounts of mutations... some just go on and cause disease unfortunately. if you want more info DM and I can forward some links. Not just the company I work for.  I don't get involved with patients, but just giving you the information here as many people think the NHS is the only way to go. Private company have a 2-4 week turnaround. NHS for hereditary cancer testing is 3-18 months... sometimes more. 

[FFC365]

The Gleason scale range goes up from 0 or undetectable to 10. The higher the number the bigger the problem that exists.

Interpretation:
Gleason 6 (3+3): Low-grade cancer, cells look similar to normal cells.
Gleason 7 (3+4 or 4+3): Intermediate-grade cancer, cells look somewhat different from normal cells.
Gleason 8-10 (4+4, 3+5, 5+3, 4+5, 5+4, 5+5): High-grade cancer, cells look very different from normal cells.

So my 4+5 was why the medics were concerned!!

[sunburywhite]

Has anyone had tests in the last couple of weeks?

I had test results yesterday and my PSA is 0.01, down from 0.02, 6 months ago, both are brilliant. I've been tested for nearly 10 years, 2 years ago my PSA soared and I came in at 4 + 5 on the Gleason scale (that is VERY high) after Radiotherapy and Hormone treatment i am in a good place. The message has to be "get tested" (I am 77 in August)

Thanks FFC365, great post, shows that there are cures for all
I have a feeling I am going down the radiotherapy and hormone route
Anything I should know?

[FFC365]

Has anyone had tests in the last couple of weeks?

I had test results yesterday and my PSA is 0.01, down from 0.02, 6 months ago, both are brilliant. I've been tested for nearly 10 years, 2 years ago my PSA soared and I came in at 4 + 5 on the Gleason scale (that is VERY high) after Radiotherapy and Hormone treatment i am in a good place. The message has to be "get tested" (I am 77 in August)

Thanks FFC365, great post, shows that there are cures for all
I have a feeling I am going down the radiotherapy and hormone route
Anything I should know?

I can testify that the treatment and I am told by those who know that it has a high rate of success. I encourage you to share your experience to all you meet at the hospital and you will learn and you will be able to help others in the same boat. The Radiotherapy is no problem, the hormone treatment does sap your energy and you get 'power surges' (hot flushes) but I continued to play competitive table tennis (with extra rest between games). I wish you well sunburywhite, be encouraged.

[gang]

Has anyone had tests in the last couple of weeks?

I had test results yesterday and my PSA is 0.01, down from 0.02, 6 months ago, both are brilliant. I've been tested for nearly 10 years, 2 years ago my PSA soared and I came in at 4 + 5 on the Gleason scale (that is VERY high) after Radiotherapy and Hormone treatment i am in a good place. The message has to be "get tested" (I am 77 in August)

Thanks FFC365, great post, shows that there are cures for all
I have a feeling I am going down the radiotherapy and hormone route
Anything I should know?

Hormone route is a course of estrogen administered by injection prior to starting radiotherapy.You will then have markers put in to determine where the radiation goes.
Small dots are then tattooed as a guide for the radiologist.
A course of radiotherapy is then daily, mine was 3 weeks Monday to Friday, your timescale will be determined by your consultant.
None of this is painful although the insertion of the markers is a little uncomfortable.

During radiation you are lying down in the position that the radiologist will move you to and held in that position by the mechanics of the bed.

I had my treatment early in the morning and found it a good idea to go to bed for a couple of hours in the afternoon after treatment.

I know you will be worried about your condition but the treatment for prostate cancer
in England is highly successful and I wish you all the best for your treatment.

[Mr White]

I've had psa and finger tests since I was 50 and was always told no sign of cancer.Im now 77,at 73 I decided to have turp because I had problems peeing, I had to have a mri before and they spotted a small lesion, ended up having 3+4 Gleasons freaked me out but decided to go active surveillance save all side affects of treatment 4 years on i'm on watchful waiting. Just remember guys just because your psa is ok no guarantee you're in the clear.

[StuinSalop]

Ok here is my story.  I had the finger test and was told I had an enlarged prostate but it was normal otherwise and I was ok. I then noticed blood in my urine and that started a whiole saga of tests on the bladder etc including prostate.  Then I had a PSA test and was 17.9.  I then had a biopsy which showed I had highly aggressive prostate cancer. Further tests reviewed it had escaped the prostate and got into my bones in about 6 places.  That was 4 years ago

I then had radiotherapy and have been on various powerful hormone medication. This morning I had my Q injection into my stomach plus I take powerful medication daily

I live a normal life, travel to home games from Shropshire, play golf and drink too much as I enjoy it. The effects of the drugs are not great but heyho.

My PSA is 0.07 and am 69 years old. 

The treatment keeps me alive and if I had not been diagnosed I would probably not be writing this.

[Somerset Fulham]

Crikey Stu, thank Christ for the drugs eh?

I'm a Type One diabetic and so am in a similar boat to you without having had the severe treatments that you did. But if I stop taking the drugs then I am dead.

[sunburywhite]

Christ Stu

Amazing journey and glad you are still on it

Thanks for sharing it and hopefully making more people aware

[StuinSalop]

Blood results in. All good PSA 0.05.  Should easily make 70. Another milestone.  Live life everyone.  On way to London now to see the family.