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User
Posted 07 Jan 2017 at 13:35

Hi, my name is Terry I am 51 years old and have just been recently diagnosed with Prostate Cancer. It all really started with what I thought was a urine infection. The urine infection did not clear after anti bionics so have ultra sound and blood test followed.

PSA came back as 6.01 then went for MRI which cam back as PI-RADS score of 4 with high probability then biopsy came back with Gleason score of 7 (3x4). Everything else from what I can gather seems OK albeit I have constant pain in my lower back.

I am now waiting for my first appointment post diagnosis so was wondering what my options were now.

I have decided to stay off google as even the common cold is deadly will looking there, but joined here just t really try and get some advice as seems to me that I have some light at the end of the tunnel regarding treatment and survival rate

Thanks for listening and look forward to any advice

Regards

Terry

User
Posted 08 Jan 2017 at 09:32

Hi

You need to speak to the consultant about your full dx so you can make decisions. The cancer can grow slower than some others and it's common to see the advice that you have time or don't rush. But be aware not everyone has time and sometimes those who are told they do don't. I was told I had time but when they operated 3 month later the cancer was breaking out of the prostate. It was also graded higher.

It would go without question that your treatment can take place on the NHS as you are clearly a U.K. resident.

Keep us updated

Bri

Edited by member 08 Jan 2017 at 09:34  | Reason: Not specified

User
Posted 10 Jan 2017 at 16:40

Hi,

 

Thanks everyone for the advice and things are a lot clearer now. 

As for the UK NHS thing it really does not matter either way If I pay or I don't, I just want to be home with my family and with people who I believe will care for me! If I stay here, I can assure you, I will have the operation if I am granted, and the follow up care will be zero, as I am a non national, and to be frank the treatment here is for locals only when it comes to the type of treatment I expect I will be faced with. 

I am not a rich man so please don't think I am being a bit flash but it is my life and health and its no good being the richest man in the graveyard. I do believe due to my situation I am due treatment on the NHS BUT if I am faced with a bill then I suppose my insurance will pay or I will pay.

I do not want to be classed a health tourist but really all this is irrelevant as whatever happens I will be treated at home in the UK. 

Thanks everyone for being so kind and I will update as soon as I know more!

 

 

Edited by member 10 Jan 2017 at 16:43  | Reason: Not specified

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User
Posted 07 Jan 2017 at 14:27

Hello Terry and welcome

Although a diagnosis of Prostate Cancer can be devastating, you would appear, from your scores, to be in the "lucky" camp.

6.1 is obviously higher than it should be but a Gleason 3+4 is much better than 4+3.

I would have thought most options were open to you including Active Surveillance which is where nothing invasive is done but you are closely monitored until such time as things change.

Go to Publications on this site and you can download information on the various treatments and their side effects.

It might help you form your questions when you attend hospital meetings. Write them and the answers down

It would also be helpful for you to take somebody with you as there is a lot to take in and another pair of ears helps.

Well done for finding us and joining. Google CAN be a great help but as you say, it can also give frightening and non relevant (to you) information.

We are a very friendly group and everyone tries to help everyone else, after all, we all know what it feels like when you are diagnosed and then treated.

I'm sure others will be along to welcome you.

Best Wishes

Sandra

Edited by member 07 Jan 2017 at 14:29  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 07 Jan 2017 at 14:36

Thanks Sandra,

 

That refreshing as my consultant urologist diagnosed me very quickly and his first advice was removal of Prostate. The diagnosis was scary enough without the aggressive treatment advice

I will do whatever I can to be well again but just really wanted to see where I stood. I am in Kuwait working on a short term contract and my GP here has referred me back to UK. They can treat here but have limited experience with the robotic arm according to the urologist. I am happy to be back to UK and thanks so much for the reply.

Regards

Terry

User
Posted 07 Jan 2017 at 15:29
Terry

I'm 46 and had initial PSA of 6.2. PIRAD 5.

Had robotic surgery on 9th December. Now that the prostate etc has been examined, my PCa has been upgraded from T3a to T3b and from Gleason 7 to Gleason 9.

Because of my young age, I was told by the urologist and oncologist to go for surgery. It then leaves later options. I have no regrets with my decision. I just wish I didn't have PCa.

It seems to me that the younger you are, the more likely they are to lean towards surgery.

One other thing, as you are now outside the UK, are you still entitled to free NHS care? It seems to be based on residency now. Don't want to worry you, but it is worth checking out.

Walter

User
Posted 07 Jan 2017 at 15:36

Thanks Walter,

The same advice was given to me due to my age. I am ready for it if it has to be done it just seems a bit daunting at the moment.

 

Not really sure on the NHS thing but have insurance if I have to be treated private. I am only on a short term contract and have Uk address so maybe I am fine. I can get treated here but they have referred me home due to the lack of experience here with the robotic surgery.

Fingers crossed for your speedy recovery Walter and thanks so much. I will update once I have my appointment o see what is said. Its great to have some chat as I am still quite stunned. 

Regards

Terry

User
Posted 07 Jan 2017 at 15:48
Terry

I was lucky in that my surgeon is exceptionally well regarded. You need to ask about nerve sparing. There are bundles of nerves which can be damaged or which may need to be removed. These nerves are essential for erections. The more of the nerves that are spared, the more likely you are to regain erectile function. My operation was sadly non nerve sparing. But in the end, I told my surgeon to do his best to spare any nerves he could, but that his priority was to get rid of the cancer. The more skilful your surgeon is might help with future erections and incontinence issues.

I think the NHS things is if you have lived outside the UK for more than twelve months.

Walter

User
Posted 07 Jan 2017 at 15:51

I can see that due to your age they would suggest surgery first.

My husband, for instance was turned 70 and opted for permanent low dose seed Brachytherapy. I don't think this is really suitable for younger men due to the possibility of say, bowel cancer, further down the line. Obviously at his age he may well have developed that anyway.

With surgery you can have follow up RT if surgery doesn't work. It is highly unlikely that you would be able to have surgery after RT as it is harder to do then.

The only real advice is don't rush into anything and to suss out all your options before you go ahead. You are the one who has to live with any consequences.

Unfortunately, there isn't a one size fits all treatment in the same way that not all treatments affect everyone the same way. You might sail through surgery with no incontinence you might not. That's why you have to be very certain that the chosen treatment is the right one for you and be happy with your choice.

If you have a UK address and have paid your National Insurance then I wouldn't have thought NHS treatment was barred to you.

The site is sometimes quieter at the weekends but I'm sure members other than myself and Walter will be along

There are many members on here many at different staging, perhaps different treatments but one thing is guaranteed, you will get help and support. Not with your choice if you were to ask outright but many can and will comment on what they did and how it was for them.

Anything at all you want to ask, no matter how personal will likely get a response. If you want to read somebody's particular journey then click on their avatar and read their profile

 

We can't control the winds - but we can adjust our sails
User
Posted 07 Jan 2017 at 15:57
I've googled a bit on overseas residency. There's loads of stuff on it. I hope the following link works.

http://www.telegraph.co.uk/news/health/expat-health/11571256/British-expats-from-outside-Europe-must-pay-for-NHS-hospital-care.html

Walter

User
Posted 07 Jan 2017 at 16:16

Thanks so much, it seems that I am up and running!

I can really see the point regarding NHS treatment to be honest and have no problem either way. 

I will have a lot of questions as I go along and I will check out the stories and update my story for others to view

Regards

User
Posted 07 Jan 2017 at 16:21
People here are brilliant. Not sure if you can access the PCUK nurses from outside the UK, but they are brilliant at explaining everything.

W

User
Posted 07 Jan 2017 at 16:37

Hi Terry

Sorry to find you here, but now that you are, you will find it a great resource and a wonderfully supportive community.

You have already had some great advice. Simply put read up as much as you can on this site before your appointment, go prepared with your questions and take someone along, and don't feel rushed to make a decision. It is usually a slow growing cancer, and you shouldn't feel like you have to make a decision right away. Some people just want to get on with it, and that is OK and their decision.

I have a similar staging to you and I was first diagnosed in October, but I have only just made a decision to proceed with the operation. I have scheduled it for March, which my surgeon supported. I did consider Active Surveillance but with the chance it may be under-staged (because the nature of the TRUS biopsy and targeting, they may have missed more cancer - see Walter's case), I decided for RP.

Good luck.

Chris

User
Posted 08 Jan 2017 at 03:38

Thanks Chips,

I am really interested in how it goes for you as I feel that although I have options I want to get rid of it. Maybe thats just my first reaction, and the appointment may calm me down a bit. Its great finding this site and also have this support.

 

Regards

Terry

User
Posted 08 Jan 2017 at 09:15

Hi Terry,

My OH was diagnosed in March last year Gleason 3+3, PSA 6.6 because of his age then (54) the consultant wanted to do surgery, my OH decided that he wanted to AS, I will not say that it has been easy with waiting for 3 month PSA results but we have managed to carry on as normal with a few low times, his PSA has slowly gone up, we are awaiting the results of his last one and see the consultant on the 24th Jan, if it has gone up again we have to consider coming off of AS and take the next step.

User
Posted 08 Jan 2017 at 09:32

Hi

You need to speak to the consultant about your full dx so you can make decisions. The cancer can grow slower than some others and it's common to see the advice that you have time or don't rush. But be aware not everyone has time and sometimes those who are told they do don't. I was told I had time but when they operated 3 month later the cancer was breaking out of the prostate. It was also graded higher.

It would go without question that your treatment can take place on the NHS as you are clearly a U.K. resident.

Keep us updated

Bri

Edited by member 08 Jan 2017 at 09:34  | Reason: Not specified

User
Posted 08 Jan 2017 at 12:32

Originally Posted by: Online Community Member

Hi

You need to speak to the consultant about your full dx so you can make decisions. The cancer can grow slower than some others and it's common to see the advice that you have time or don't rush. But be aware not everyone has time and sometimes those who are told they do don't. I was told I had time but when they operated 3 month later the cancer was breaking out of the prostate. It was also graded higher.

It would go without question that your treatment can take place on the NHS as you are clearly a U.K. resident.

Keep us updated

Bri

Ditto the above from Brian.  The bold bits applied to me except, I was operated on within 2 months, the cancer was touching the wall of the gland, so my staging was upgraded.

Take the best advice for you, then make your preferred decision. Don't look back.  Best of luck.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Jan 2017 at 14:39

Thanks so much all,

It is clear to me now that this first consultant appointment in UK is very important and that I need to be prepared. 

I already feel ready (if that sounds a bit daft) to face this and take it on! 

I will keep you all posted and update my story here for others. Plus thanks for the advice on UK status

Regards

 

Terry

User
Posted 08 Jan 2017 at 14:56

Sorry one more thing.

My advice from the urologist was to have a bone scan can someone explain this please??

User
Posted 08 Jan 2017 at 15:48

In the UK this is quite variable. Some hospitals give all men a bone scan as part of a suite of diagnostic tests once a positive biopsy is found; in others, the bone scan is only done if there are indicators that it may have spread. All men should have a biopsy and an MRI (although biopsy followed by MRI or MRI followed by biopsy varies from area to area) unless there are extenuating circumstances. For example, a man with very high PSA and obvious bone mets may never actually have a biopsy whilst some men can't have MRI because of other health conditions.

The bone scan is not routine but it is common. When my husband was diagnosed his PSA was 3.1 and the MRI was clear so the urologist didn't feel a bone scan was necessary. Two years later when the cancer came back I had to fight to get a bone scan and in the end we paid for it to be done privately.

Where I live, you wouldn't get a bone scan based on your stats ... your specialist may be recommending it because he thinks your insurance company will pay up, or because of your backache, or simply because in Kuwait it is a routine part of diagnosis.

If you meant 'why worry about the bones' rather than 'why a bone scan' - if common PCa is going to spread, it has a particular liking for bone or the lymphatic system although there are rare PCa types that tend to go to the lung or liver instead.

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

User
Posted 08 Jan 2017 at 15:50

Originally Posted by: Online Community Member

It would go without question that your treatment can take place on the NHS as you are clearly a U.K. resident.

Bri

 

Bri, how do you know???? I think things have changed rather dramatically recently :-( 

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

User
Posted 08 Jan 2017 at 16:20
Hi Terry

No 'standard' . I had pre biopsy MRI, CT and bone. http://prostatecanceruk.org/prostate-information/prostate-tests/scans-and-tnm-staging

I assume depends on dx. budgets and availability of resources. See Lyn post. Reading your profile in my opinion get as much in hard copy as you are able and engage the 'Uk' system as effectively as able. I was dealt with very well by NHS and the GP took minimum role and still does. I make sure my PSA results are emailed to my surgeon. We have moved regions albeit only a few miles and I assume systems are disparate.

The hospital procedures are fine and generate my appointments, last year I have PSA test at hospital as surgeon hadn't been sent my results from GP. Took about 30 mins wait and a letter came from urology a week later.

Obviously you need to engage via a GP.

Edited by member 08 Jan 2017 at 16:26  | Reason: Not specified

User
Posted 08 Jan 2017 at 20:33
Originally Posted by: Online Community Member
Originally Posted by: Online Community Member

It would go without question that your treatment can take place on the NHS as you are clearly a U.K. resident.

Bri

Bri, how do you know???? I think things have changed rather dramatically recently :-(

He is working abroad on a short term contract. His address and I presume due to his short term contract means he will retain ORi in England. Why wouldn't he be entitled Lyn?

Bri

User
Posted 08 Jan 2017 at 21:04

I don't have a view one way or the other - it just surprises me that you have been able to determine this when the DoH has had to write a 22 page document for hospitals to help them work out what is very complex stuff. He can be British, with a British passport and an address here but still not have Ordinary Residence status. You don't know how long this man has been working in Kuwait, whether he is paid in £ or currency, whether he is ending his contract to demonstrate a permanent return or anything like that.

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

User
Posted 10 Jan 2017 at 16:40

Hi,

 

Thanks everyone for the advice and things are a lot clearer now. 

As for the UK NHS thing it really does not matter either way If I pay or I don't, I just want to be home with my family and with people who I believe will care for me! If I stay here, I can assure you, I will have the operation if I am granted, and the follow up care will be zero, as I am a non national, and to be frank the treatment here is for locals only when it comes to the type of treatment I expect I will be faced with. 

I am not a rich man so please don't think I am being a bit flash but it is my life and health and its no good being the richest man in the graveyard. I do believe due to my situation I am due treatment on the NHS BUT if I am faced with a bill then I suppose my insurance will pay or I will pay.

I do not want to be classed a health tourist but really all this is irrelevant as whatever happens I will be treated at home in the UK. 

Thanks everyone for being so kind and I will update as soon as I know more!

 

 

Edited by member 10 Jan 2017 at 16:43  | Reason: Not specified

User
Posted 10 Jan 2017 at 17:13

"it's no good being the richest man in the graveyard."

Absolutely - we didn't have health insurance so we self-funded to ensure John had the surgeon my dad and other family members were under. All those years ago my dad paid £18000 cash for what was then a trial technique (nerve sparing) because it wasn't available on the NHS. As you say, when something like this happens you want to be in your own bed so to speak.

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

User
Posted 18 Jan 2017 at 09:37

Good morning,

 

I have had my first UK consultation and all is very positive and good. The urologist gave me another basic examination and gave the cancer T2a  if that makes sense. He also told me to calm down and take a breath. I can now sit, watch and wait and weigh up my options!

He informed me I can have the operation if I wish and have three options, open surgery, robotic surgery or through the groin. He advised that if I opt for radio therapy which is an option later surgery will be complicated 

I will not take another PSA blood test next month and wait for their reply

I am feeling very positive and upbeat having now completed this consultation. 

Regards

User
Posted 10 Jun 2018 at 14:30

Hi everyone and its been a while since I have been on here but here is my update.

I continued to watch my PSA and it stayed consistent with the first level. I came back to the UK in Jan 2017 to meet with the consultant urologist from the NHS I then had a further MRI in Jul 2017 and waited. I continued my PSA testing every three months but then decided at the end of 2017 that I could not wait any longer for my treatment and opted through referral to be treated at the Birmingham Prostate Clinic.

To cut a long story short in April I had another MRI and within three days was on the operating table for Open Radical Prostatectomy. Post Op I stayed in hospital for four days and was discharged with catheter of which that was later removed after a week or so. Once the catheter was removed it was a while before I could pee properly again abiet I did pelvic floor daily. I then went back around one month post op to learn the cancer removed was T3a with extra capsular spread on the right side all margins were clear although very close on the right apex and the right circumferential. It was also Gleason 4 x 3 and the synth nodes were negative. At this time I wait the 3 month pSA but the consultant if quite confident the cancer has been removed.

Recovery was slow but I am feeling 100% and really fit and healthy post op. I do think I was very very lucky and If I can give any advice I think by waiting for my op for over twelve months post diagnosis I gambled and in hindsight would never had done that. Plus the PSA gave me no reason for alarm.

I will update again 

Thanks so much

Terry

Edited by member 10 Jun 2018 at 14:31  | Reason: Not specified

User
Posted 10 Jun 2018 at 19:27
Hi Terry,

Well your staging justifies you decision to have radical tretment and with clear margins hopefuully the complete eradication of your cancer. Nevertheless, it is important that you continue to be monitored. Unfortunately, for some PCa can become a problen again even many years later.

Wish you well.

Barry
User
Posted 10 Jun 2018 at 23:00

Hi Terry,

Glad to hear you are feeling 100% and hope everything now is sorted.

Hearing this makes me thankful I took the decision to have the robotic operation as soon as I found out I had PC and not monitor the situation

which was one of the options offered to me.

I too have a friend who was diagnosed with PC and took the option to monitor it for 12 months. Eventually he took the decision to have the operation as his PSA was rising. After the operation it was found the cancer had spread and he has had to undergo RT.

Its a matter of choices and everyone is different as to what they choose.

Something for others in a similar situation to consider.

Best Wishes

Rich

User
Posted 10 Jun 2018 at 23:18
very good news so far Terry.

Fortunate that you did not choose to wait and see.

Fingers crossed all works out well for you.

dave

Do all you can to help yourself, then make the best of your time. :-)
 
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