I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Just diagnosed. Age 53

Email this conversation Print this conversation
User
Posted 25 Aug 2018 at 17:30

Joined this site in June 2018 after my PSA was found to be raised at 6.9.


Two courses of antibiotics still 6.9 after an initial fall to 4.8 after first 4 weeks.


Back in 2015 my psa was 6.1 and dropped to 3.4 after antibiotics - mri clear.


Friday 24/08/2018 diagnosed with Gleason 7 (3+4). Left mid 40% cancer and right side posterior 50%.


Mpmri had shadow area but indicates that the cancer is contained within the prostate. Template biopsy confirmed urologists suspicions.


Feeling positive with robotic surgery planned in a couple of weeks.  Although, a sigmoidoscopy next week as an area of suspicion was discovered in my rectum, during biopsy.


Regards Neil.


 

Edited by member 23 Nov 2018 at 11:28  | Reason: Not specified

User
Posted 25 Aug 2018 at 18:47
Very best of luck with your surgery, Neil. Things are moving very quickly, with surgery only two weeks after diagnosis? Were you given the option of HT+RT or was RP the only item on the menu?

Chris
User
Posted 25 Aug 2018 at 20:19
Good luck Neil
We can't control the winds - but we can adjust our sails
User
Posted 29 Aug 2018 at 20:36

Thanks Chris.


My choice was surgery. Only time will tell if this decision was correct.  Did consider brachy' seeds but changed my mind.


Neil

User
Posted 29 Aug 2018 at 20:40

Cheers Johsan.


Just hope the winds are favourable and it doesn't get too stormy...oil skins at the ready.


Neil


 

User
Posted 06 Sep 2018 at 20:50

Week delay in sigmoidoscopy before RALP.


Fortunately, sigmoidoscopy was clear so can proceed with surgery. Now seeing surgeon at the end of September which is disappointing. Under the impression, after biopsy, that surgery would be carried out sooner.


I have requested a particular, experienced, surgeon who has done hundreds of RALP's.


May consider speaking with cancer nurse to request an earlier appointment - even if it means open surgery.


Things have been dragging on since urology appointment in May. Now I just want the darn thing out.


I know experienced surgeon's can give best outcomes but I can see my case drifting into October.


Neil.


 

User
Posted 06 Sep 2018 at 21:12
Hi Neil,

I have a friend with Gleason 3+4=7 who has been on active surveillance for some years, just having regular PSA tests and MRI scans.

I was Gleason 4+3=7, PSA 16 odd, and was told in no uncertain terms that A.S. would not be appropriate in my case, which turned out to be correct as there was some spread outside the capsule.

A few weeks or months here or there in your situation will not make much difference to your eventual outcome.

What will however, in terms of continence and potency, is the skill of your surgeon, so I urge you to research the experience and results of whoever you end up with.

Cheers, John.
User
Posted 06 Sep 2018 at 21:54

Thanks John.


You are quite right in what you say. The surgeon I requested has a great reputation.  A few extra weeks wait will not make much difference in reality.. I know.


However, I have read a few accounts of gleason scores being upgraded after surgery - were patients have had protracted treatment and delays.


My psa was 6.1 in 2015 and I can only imagine that my cancer was there, but not picked up by mri.


Today has been my only negative day since diagnosis and tomorrow is another day. Hopefully I will see things a little clearer. 


Thanks again John for your reply.  All the best to you and your friend, who is braver than me on AS.


Neil.

User
Posted 06 Sep 2018 at 22:06
I’ve found treatment in the Liverpool area to be very good, Neil. I’ve just undergone a robotic procedure at Arrowe Park hospital on the Wirral, and I’m having my prostate treatment at Clatterbridge Cancer Centre.

Very best of luck to you,

Chris
User
Posted 06 Sep 2018 at 22:28

Hi Chris. It is good to hear positive stories regarding treatment for PC.  I wish you all the best in recovering from your kidney op'.


Liverpool Royal/Broadgreen for me. Think the north west is blessed with fantastic cancer treatment facilities.


Neil.

User
Posted 06 Sep 2018 at 22:36

We are indeed fortunate, Neil. Most of the men on the urology ward where I was were there for prostate surgery. Arrowe Park is where the Wirral’s “Da Vinci” robot is located.


It probably sounds like a really strange thing to say, but once the actual op was over, I really enjoyed my stay in Arrowe Park. All the nursing staff were so kind and friendly, and the other men in the bay I was in (it was a 6-bed bay) soon felt like old friends. Although I was obviously pleased to go home, I do miss the company I had there.


Chris

Edited by member 06 Sep 2018 at 22:49  | Reason: Not specified

User
Posted 06 Sep 2018 at 23:27

Once I jump into the boat,  as it were, I will undoubtedly feel the same connection with those around me. Strangers no more.


Infact, the day that I was in for my template biopsy I got on very well with the guy in the next bed.


I saw him ten days later having been given the all clear.  I was made up for him and his wife and wished them all the best. Twenty minutes later me and my wife got very different news.


Neil.

User
Posted 11 Sep 2018 at 18:57

Received letter today confirming my diagnosis.


Gleason 3+4.


2/3 cores 40% on left mid with (added news of peri-neural invasion)


Right lobe posterior - 1 of 3 cores 50%


Mri staging is T2a


How significant is the added news of peri-neural invasion?


Thanks


Neil.


 


 

Edited by member 23 Nov 2018 at 11:23  | Reason: Not specified

User
Posted 11 Sep 2018 at 19:56
The jury is out on it - some large scale research suggests that PNI diagnosed at biopsy increases the % likelihood of needing salvage treatment post-op which suggests that HT / RT may be a better radical option than surgery. On the other hand, PNI spotted post-op is so common as to not seem to make a difference to outcomes.

PNI coupled with the 40% means that the surgeon may advise you not to have nerve-sparing on the left hand side, but it depends on the rest of the story to the 40% .... is it 40% of each core or 40% of the cores taken? Something to ask when you finally get to see him?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2018 at 20:06

Hi Neil,


Perineural invasion means the cancer has spread to the nerves which control erectile function on one or other or both sides of the prostate. You may have heard of nerve-sparing operations which save the nerves, which I had on my right side - not that it has done any good so far. The bogeyman in these reports is the phrase extra-prostatic extension, which means spread outside the capsule, which perineural invasion is not.


One surgeon I consulted was going to remove all the nerves on both sides anyway. According to reports here there are possibilities for eventual erections even if no nerves are spared.


Best of luck, as usual.


Cheers, John

User
Posted 11 Sep 2018 at 22:18

Thanks for the replies John and Lyneyre.


Disappointed not to be told about PNI when given diagnosis. Significant omission and will have to give thoughts to other treatments.


Thanks Neil.

User
Posted 11 Sep 2018 at 22:27

"Perineural invasion means the cancer has spread to the nerves which control erectile function on one or other or both sides of the prostate." 


No, that's not quite right. The nerve bundles controlling erections are the neurovascular bundles which wrap around the outside of the prostate like a layer of webbing. PNI affects the neural tubes inside the prostate. Two different things.

Edited by member 11 Sep 2018 at 22:28  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2018 at 22:30
If the surgeon had your lab report when s/he suggested surgery was an option, I think you have to assume that armed with the relevant information, he felt the PNI was not a significant issue.

The 40% bit needs clarifying.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2018 at 23:56

Lyneyre


First visit with surgeon at end of September.


My initial decision, after chat with urologist, was surgery. However, more discussion is needed in the light of this latest news.


Thanks


Neil


 

User
Posted 12 Sep 2018 at 00:59

Neil


I wish you the very best with your anticipated treatment.


Lots of great support out there, check you local hospice for PC Support group and PCUK offers lots of support and info.


Mark

User
Posted 12 Sep 2018 at 01:21

Thanks Mark.


Not stopped reading about PC since May, when it was suggested that I may have it.


Only when I speak with the surgeon will I know what my course  of action will be.


All the very best with your treatment and I will certainly look for local support groups.


Neil.


 


 

User
Posted 24 Nov 2018 at 07:14

Hi,


my father had a similar diagnosis to you back in 2009, he opted for surgery. They could not spare the nerves. He is cancer free, with some stress incontinence and ED. But he is happy because he does not have cancer. It may be that your surgeon could save some nerves on rhs which may improve your chances with ED. 


start kegal exercising now if you haven’t already, my father didn’t, then really struggled post surgery with incontinence as he didn’t know what to do and couldn’t feel anything.


whatevet you decide to do, make sure you are fully informed.


All the best...

User
Posted 24 Nov 2018 at 17:38

Cheers machine46,


Thanks for your best wishes. However, the initial post was from September.


All done and dusted in October and doing very well thank you. Just the pathology report to come in December.


How are you doing after surgery? Still doing well i hope?


Neil.


 

User
Posted 25 Nov 2018 at 07:43

 My pathology results are next week.


Glad it’s going well for you.


 I am still recovering well, still got abdominal pains but managing with paracetamol. Continence at 95% so very happy.

Edited by member 25 Nov 2018 at 07:46  | Reason: Not specified

User
Posted 25 Nov 2018 at 19:10

Good luck Neil,


hope all goes well Andy aged 55 today, surgery by robotic July 23,


 

User
Posted 25 Nov 2018 at 19:39

Andy63,


Just coming upto 6 weeks since op'.  This thread started in September so my surgery is all done and I'm doing fine, thanks.


Thanks for the 'good luck' and i wish you all the best. Hope you are doing well. Just my pathology to come in December.


Cheers and enjoy your birthday.


Neil.

Edited by member 25 Nov 2018 at 22:53  | Reason: Not specified

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK