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PET/CT scan results

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User

Posted 28 Nov 2016 at 00:06

Good evening all

Some of you know my story. 46, diagnosed with PCa, T3aN1Mx, Gleason 7.

Well, my GP phoned me on Friday with my PET/CT scan results. No spread, not even to the lymph node. I think they may be downgrading me to T3aN0M0.

I'll see my urologist and then an oncologist on Wednesday, but my GP has told me they're pretty determined to do robotic prostatectomy - they say it's my best option.

Anyway - it's not in the lymph nodes - best piece of news I've had in weeks. Oh, and my brother having a PSA level of 0.38 - so at least he doesn't have this dreadful disease.

Walter

User

Posted 28 Nov 2016 at 09:43

Hi Walter
Good news. Thanks for update. Also great re. Brother. May I ask how old is he.
See my profile . My brother 69 just been diagnosed. PSA only 3.57

Whatever your personal attitude to PSA screening. Hopefully brother has 2 yearly tests at max. as this gives a base level.
Basically brother has had tests for over 15 yrs. He lives in Australia.

He may not go surgery route. He's digesting his options. He will make decision by Feb 17.

As you are so young and assume fit and active. Please don't underestimate surgery recovery. Plus I think they put all patients on blood anti clotting med. So give yourself couple months post op. Ie not flying at all. Low risk blood clots etc Flying won't be advisable at all. My wife had to reign me in a times which I was very thankful. My catheter in only 7 days and easy to walk around on leg. I was out and about. However I did get bladder spasms later. Encruciating pain. Thanks lasts only couple minutes. Lots you not told about.. as everyone is different.

Again best wishes

Gordon

Edited by member 28 Nov 2016 at 10:05 | Reason: Not specified

User

Posted 28 Nov 2016 at 09:45

Good news Walter,

Treatment choice is yours, but I know that I would not do anything different given the choice again.

Good luck for your ongoing treatment whatever you choose.

KRO...

User

Posted 28 Nov 2016 at 09:48

Walter

Great news. It's always good to start the day with a smile.

Ray

User

Posted 28 Nov 2016 at 11:17

That's great news Walter.

I had an appointment with the surgeon last week and I'm seeing the oncologist tomorrow. The surgeon did not try to push me towards having the operation. In fact, he said that he would not normally operate on me because of the high PSA (72), but because I'm generally fit and healthy, and the high PSA may have been due to an infection, he will consider operating if my PSA comes down. I was not keen on any radical treatment, and I wasn't going to let anyone dictate my choice. But his approach gave me much more confidence in having the operation. One of the great hings about this site is the unvarnished truth of the risks, and you should go prepared with all the hard questions floating around in your head.

My local hospital offers an afternoon Health & Wellbeing session for patients having or considering the operation, which goes through the whole procedure in detail with film! Apparently it is very good and you are encouraged to attend with your partner. You should ask if they have anything similar in your area.

Good luck

Chris

User

Posted 28 Nov 2016 at 12:14

Originally Posted by: Online Community Member

That's great news Walter.

Good luck

Chris

Thought provoking post Christopher, As I'm in a position to 'influence' my brother (ie He's at a point of 50/50 ie RT/RP). I don't regret LRP at all. I favoured the post op re. PSA values and possible RT 'backup' (although some see this as Surgery failing ). It will be down to his consultant, I know he had a laser procedure 3 years ago (his recent mpMRI states a TURP defect) I was asymtomatic, whereas brother has had BPH and infections. His prostate volume is 39cc. Maybe the risk of longer term incontinence, therefore too high for him. He will probably go 'RT' route.

Edited by member 28 Nov 2016 at 12:15 | Reason: Not specified

User

Posted 28 Nov 2016 at 12:40

Hi Walter
Great news for you and confidence of no lymph spread. Unfortunately I didn't have this scan before the op and they found 5 lymph involved. But I get another PET in February to see where it's moved to now.
Good luck

User

Posted 28 Nov 2016 at 15:41

Thank you all for your good wishes.

And, very much out of context, just phoned Nationwide and am upgrading my existing current account with them to a Flex Plus account which has travel insurance. Spoke to the medical screening people and they will cover me worldwide for a supplement of £180. That's not bad.

Walter

User

Posted 28 Nov 2016 at 15:42

Gordon - my brother is 48 and his PSA was 0.38 and his DRE was normal.

Walter

User

Posted 28 Nov 2016 at 16:56

Fantastic News, Walter!

Things are looking good.

All the Best,

Steve

PS. Great news about your brother too.

Edited by member 28 Nov 2016 at 16:57 | Reason: Not specified

User

Posted 28 Nov 2016 at 17:06

Steve

I'm doing a tour of Berkshire hospitals. Although I'm based at Wexham Park, surgery will be at the Royal Berkshire in Reading.

Walter

User

Posted 28 Nov 2016 at 19:31

Hi Walter,

I've always been looked after very well at RBH. I've had all my treatment there.

I know "Robbie the Robot" (everyone knows the DeVinci machine by that name) very well because I did several photo assignments with it when it was first installed. Great piece of equipment. Got some great pictures of it slicing up bits of fairy cakes so I'm sure removing your prostate will be "a piece of cake". I even had a little go on it but promise not to be at the controls when you have your op!

Try to relax now and things will be ok.

Steve

User

Posted 28 Nov 2016 at 19:32

Not everyone gets the anti-clotting meds - some men don't need them.

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

User

Posted 28 Nov 2016 at 22:50

Steve - I shall give your best regards to Robbie and think of fairy cakes as I fall asleep - Walter

User

Posted 29 Nov 2016 at 08:28

Originally Posted by: Online Community Member

Steve

I'm doing a tour of Berkshire hospitals. Although I'm based at Wexham Park, surgery will be at the Royal Berkshire in Reading.

Walter

Interesting..... when I saw the oncologist at RBH (referred to by urology at Wexham Park) he suggested if I chose surgery it would be done at Wexham! I will never know now of course, having chosen RT done at the Bracknell clinic round the corner from here.

(and just popping down there a little later this morning for my PSA and other blood tests ready for checkup at RBH next Monday).

User

Posted 29 Nov 2016 at 22:06

My head is all over the place tonight. My 17 year old daughter has just been put on the two week urgent cancer appointment pathway for skin cancer. I'm meeting my urologist and oncologist tomorrow to discuss my treatment plan. My surgery is likely next week. I don't think I have the strength to research skin cancer too.

Walter

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