Scan this Wednesday

User

Posted 06 Feb 2021 at 21:36

I don't remember much about the tests I had but I do remember me 'peeing in a bucket' and having a biopsy, then being operated on to have my Prostate removed by the Da Vinci Robot in April 2015. It worked for me and have never had a problem since.

User

Posted 09 Feb 2021 at 19:13

The MRI scan completed without incident - in and out of hospital in just over an hour including 30 minutes in the new scanner. No problems at all; I thought I would be enclosed but I went head first into and beyond the scanner so had a lovely view of the ceiling. Noisy but not an issue. Marvellous NHS technicians. Now to await the outcome and then the bone scan next Monday.

User

Posted 15 Feb 2021 at 10:37

I was due a bone scan today but on Friday heard that the appointment was cancelled as the scanner in Carlisle had broken down. So it next week's biopsy is the next step. I don't expect that whatever process that is needed will not be delayed.

Did anyone drive to and from the biopsy? (Hospital is 5 miles away)

User

Posted 15 Feb 2021 at 11:28

I did and it wasn't a problem

User

Posted 15 Feb 2021 at 16:46

I normally use a motorbike for hospital appointments as the parking is easier. On biopsy day I decided to take a taxi, just in case. I think I would have been fine in the car, probably would have been fine on a motorbike but didn't fancy taking the risk.

Dave

User

Posted 15 Feb 2021 at 17:28

J had his biopsy on the way to work - driving was fine.

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

User

Posted 15 Feb 2021 at 22:40

I headed in to the one stop shop on 1st July 2020 following a 54 ng/ml PSA test the week before, and in three hours underwent a DRE, MRI scan, and a Biopsy.

I left with a four week supply of bicalutamide tablets, a T3 prostate cancer diagnosis, and the promise of Bone and CT scans in the very near future.

I was advised not to drive myself to the one stop shop.

The scans were both done on the same day 10 days later. Full marks to the NHS for efficiency.

Edited by member 17 Feb 2021 at 10:01 | Reason: Correct a spelling mistake

User

Posted 24 Feb 2021 at 16:55

I had the biopsy this morning and confirmation of cancer with a score of 5 (range 1 to 5) on scale I don't recall the name of.

Got home to find an appointment for bone scan next week in Newcastle - about a 90 minute drive so it will be a full day out.

The biopsy uncomfortable but bearable.

I drove to and from hospital without problem. Now 4 hours later taking it easy with slight discomfort around the anus.

Next step see the results of all in 2 to 3 weeks and decide treatment,

My brother insists that we may all choose where to be treated -arguing that Carlisle would be unlikely to be the best option. What do others think?

I don't know how long a waiting list there is for whatever treatment - anyone have ideas on going private (I am by no means wealthy and do not have insurance but maybe it would be money well spent)!?!

User

Posted 24 Feb 2021 at 17:46

I think wait for your full diagnosis first - the multi-disciplinary team will look at your case in detail and determine which treatments are available and suitable to you. Carlisle may only offer treatments that are available in Carkisle; you can then do some research and if there are treatments that interest you and available at Newcastle, you can ask for a referral.

We self funded for private treatment; it is nice to have a private room and a coffee machine at clinics but it cost a fortune and the treatment failed so J had to have salvage treatment 2 years later. The usual aftercare and support is not always available on the NHS for patients who go private. Lots of things to think about but get your full diagnostics first.

On the flip side, my dad paid £25k 23 years ago for nerve sparing surgery (which wasn't available on the NHS then) and he has only had a recurrence in the last 2-3 years

Edited by member 24 Feb 2021 at 17:49 | Reason: Not specified

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

User

Posted 24 Feb 2021 at 18:27

And I had private surgery for my kidney cancer but DIDN’T have a private room. I was in an NHS urology ward in an NHS hospital, because the private hospital didn’t have the Da Vinci robot. Private treatment doesn’t necessarily equate to more comfortable rooms, etc.

Chris

User

Posted 10 Mar 2021 at 19:40

I had a bone scan yesterday and today I pre arranged appointment with consultant urologist.

1. He confirmed PC with prostate outside capsule.

2. Gleeson 4 + 4

3. T3/4N1M1B

4. From tomorrow hormone tablets Biicolutomide 50 mg for 28 days.

5. On 14 th day Zoladex injection = 10.8 mg

6. Radical treatment i.e. surgery not possible

7. Indications it may have gone into pelvic bone but awaiting bone scan results

8. 5 years max survival but depends on new treatments!

Thoughts and advice please.

Thank you

User

Posted 10 Mar 2021 at 21:33

Don't believe the 5 year survival thing - the urologist sounds like a bundle of laughs. We have men here with your diagnosis who are still living a good life 10 years later and in a few cases, 15 years or more. I hope that the urologist has now referred you to an oncologist?

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

User

Posted 10 Mar 2021 at 21:52

He says he will make an appointment with an oncologist - I guess when bone scan results are available.

User

Posted 22 Mar 2021 at 14:02

I was expecting an appointment with an oncologist but as I had heard nothing last Wednesday I sent a gentle request for information to my specialist nurse. No reply received. But this morning received letter for a telephone appointment with a second urologist (based in Whitehaven).

I do not know the results of the bone scan.

However, I want to progress things and, after consulting informally with Imperial College, to be referred to an oncologist in Newcastle working with the Atlanta trial.

I don't like to press as I understand the situation, but is it normal to have an appointment with a second urologist?

Apart from that everything goes well. I am on my 10 th day of hormone tablets (no detectable side issues) and will get the zolodox injection on Thursday. When may I expect side effects (if any) to appear?

I feel fine in fact apart from the peeing as good as I have done over the past 2 or 3 years. I'm getting fit (this week up to 10,000 paces on two days and 4 days on exercise bike for 30 minutes raising pulse to about 120).

User

Posted 29 Mar 2021 at 17:47

The urologist confirmed I have mets in pelvis and right lymph, which is what I expected, but positive as he says it is not widespread. I will speak to the local oncologist soon, but I have asked to be referred to Freemans Newcastle to see whether I may be part of the ATLANTA trial.

In the meantime, I continue to feel very well, and I am getting fitter through walking and light cycling. No side effects from hormone treatment yet, but probably too early to tell with only 4 days since the zolodox injection.

Are there any specific questions I should ask the oncologist?

User

Posted 29 Mar 2021 at 19:31

All I can think of is

- if you are not accepted on ATLANTA, does the local onco have a view about the benefits/ drawbacks of early chemo or enzalutimide?

- who will have routine responsibility for your PSA tests from now on - the hospital or GP?

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

User

Posted 15 Apr 2021 at 13:40

April 14. I met with an oncologist. As the appointment was made from Newcastle Freemans to meet in Carlisle Infirmary I assumed it was related to my interest in the ATLANTA trial. I was wrong; yesterday was the first day that Newcastle assumed responsibility for cancer treatment in Carlisle and the consultant was not aware of my interest in Atlanta.

He confirmed a shift in approach, initially due to restrictions on visiting hospitals due to COVID, with the adoption of a more "aggressive" treatment with a course of Enzalutamide to start as soon as they could get the prescription sorted, with monitoring after 8 weeks to monitor side effects. Then towards the end of the year, 6 factions of radiotherapy over 6 weeks. i.e. no chemo.

This to treat 3 spots (mets) - two in left hip (one very small) and one (very small) in right scapula.

CT scan to be arranged to check organs. PSA testing every 3 months - which he said was a good tool to measure status.

As a result the situation is clearer; I was uncertain of the status and now I think that it is as good as I could have expected.

He was ambivalent about Atlanta - but I said I would be interested in talking with the lead on this initiative in Newcastle. Lets see if he progresses that. I would be interested in the possibilities of ablation - but it is of course a randomised test and that would not be the guaranteed process.

I should meet with Carlisle specialist nurses within 10 days for blood tests etc.

Incidentally, I told a lot of people my condition and as requested by prostate UK recommended that men consider if the need to make contact with a Dr. I know of several who did so; as a result my brother in laws brother is now booked in for a biopsy

User

Posted 15 Apr 2021 at 14:29

Seems to me that the treatment plan you have been offered is far better than a place on Atlanta - a no brainer, almost?

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

User

Posted 15 Apr 2021 at 14:30

Thanks for that Lyn - what are your thoughts on Atlanta?

User

Posted 15 Apr 2021 at 15:47

The problem with these trials, as you mentioned yourself, is that you only have a 50/50 chance of receiving the treatment being trialled. The treatment plan you've been offered sounds a good one.

Best wishes,

Chris

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