Advice on options

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

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

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

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

Walter

W

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

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

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.

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