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User
Posted 21 May 2016 at 10:29
Hi all, just joined today. I was diagnosed back in march. I'm 48 so cosidered to be young for such a diagnosis. I am fortunate in so much as i have the option of rt or op both of which will be carried out at addenbrooks hospital cambridge. I just can't decide which treatment to have. So i'm looking for as many experiences of both treatments from people of a similar age to try and form a better opinion. Can any one offer this.
User
Posted 22 May 2016 at 09:34

Hi, they ruled out active surveilance mainly due to my age i think and the risk of it spreading during my lifetime. Brachytherapy wasnt considered a good enough fix so to speak so was mentioned but never offered as a treatment. And yeh great when the sun shines.

User
Posted 30 Jul 2016 at 10:13

Hi brian, dont recall any mention of positive margin or otherwise. He's now refering me to an oncologist. I was trying to find out as much as pos before that appointment so I understood everything and new what to ask at the time.
Thanks
Lee

User
Posted 30 Jul 2016 at 19:41

Lee
You can request a copy of your histology. If you wanted you could share it on here as without doubt there will be many men who will have had a similar histology. You could also discuss the histology with the oncologist.

It's interesting that he has referred you to oncology. They may be thinking that adjuvant RT would be appropriate due to the focal breech. If you read my profile you will have seen I had a focal breech and had follow up RT 6 months later. I'm now almost three years with no treatment and so thankful for that

Bri

User
Posted 30 Jul 2016 at 21:07

Lee

I am now 27 months post RARP, I had 2mm positive margins and extra prostatic extension. No one ever mentioned adjunctive RT to me, after 12 months of a  PSA of 0.03 it has slowly risen to 0.13, September is the next test and I am "possibly" heading towards salvage RT. There is of course the risk of side effects with RT at any time either adjunctive or salvage.

Thanks Chris

Edited by member 30 Jul 2016 at 21:09  | Reason: Not specified

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User
Posted 21 May 2016 at 12:56

Hello mate I'm 48. I had the operation 11 months ago. I had been offered RT and Bracchy as an alternative but it was withdrawn at last minute. Why don't you give us biopsy results and PSA levels etc. Remember it can only be your choice. I was exactly the same as you not being able to decide. Click my picture and read my profile. I was very unfortunate in that my cancer had spread without them knowing it so the operation was kind of futile. It's not nice being impotent but at least I am continent. Other people will help you but it can be quiet at the weekend. Please download the toolkit from the publications section of the site , and DO phone the nurses on the free phone number. They are amazingly knowledgeable and helpful. Best wishes
Chris

User
Posted 21 May 2016 at 14:12

What are your numbers buddy. I was diagnosed at 47

User
Posted 21 May 2016 at 15:11
Thanks for replies guys. My number etc ( dont know all the right terminology yet ) were PSA 17, gleason was 3+3 and 3+4 giving total of 7 so its both sides but scans indicate it is contained and not spread. Have however said they would remove lymphnodes on high said and there would be nerve damage.
User
Posted 21 May 2016 at 20:05

Hello Orchardmillrd and welcome

With scores like yours were you offered Active Surveillance or Low dose seed brachytherapy?

(PS - live in Essex but currently in the beautiful area of Norfolk having a short break. Stunning when the sun shines eh?)

We can't control the winds - but we can adjust our sails
User
Posted 22 May 2016 at 09:34

Hi, they ruled out active surveilance mainly due to my age i think and the risk of it spreading during my lifetime. Brachytherapy wasnt considered a good enough fix so to speak so was mentioned but never offered as a treatment. And yeh great when the sun shines.

User
Posted 22 May 2016 at 11:19
Hi. I'm not a similar age (67) but I had robotic surgery at Addenbrokes 2.5 weeks ago.with lymph nodes dissection also.. Hospital was excellent. Came out next day and took it by easy for 2 weeks. Catheter out in 8 days and was dry too. Not too hopeful on the nerve sparing front either so ED will take some solving but this will be more a consideration for you at 48. Good luck with whatever you choose.
User
Posted 23 May 2016 at 13:25

Thanks for that, glad your op seems to have gone so well.

User
Posted 23 May 2016 at 15:09

Sorry Orchard, I forgot how "young" you are.

My husband was 73 when the procedure was done.

We can't control the winds - but we can adjust our sails
User
Posted 23 May 2016 at 21:31
Hello my other half had brachytherapy done st Addenbrookes. He stayed in one night and said the staff were all very kind and helpful. The deciding is the hardest part. Good luck with your decision.
User
Posted 24 May 2016 at 08:29

Good luck with your decision mate. But if you decide to go down the RP route make sure you check out the surgeons credentials ie how many ops...success rates....sucess in minimising side effects. Its a very intricate operation and requires an experienced surgeon. I believe one of the top surgeons works at Addenbrooks a Prof N......sorry we arent allowed to name surgeons but his surname rhymes with Seal...ask for a referral to him to discuss further

Good luck

Bri

Edited by member 24 May 2016 at 08:30  | Reason: Not specified

User
Posted 24 May 2016 at 08:34

Thanks everybody for your input. Met up with a mate of mine yesterday, same age as me and he retrained as a nurse about 5 years ago. He's helped fill in a few gaps in my knowledge and told me about some other solutions available for the potential side effects. Decision made....... Op it is. Second appointment with head surgeon 27/52016 to sign consent and pre op examination.

User
Posted 24 May 2016 at 08:48
Hi Orchard,

I too opted for surgery (open) at the beginning of March. Recovery going well, I was dry within a few days of catheter removal, ed improving with the help of cialis and psa undetectable. I have no regrets about my decision at all. Click on my name for full details. All the very best for the surgery.

Cheers

AL

User
Posted 24 May 2016 at 18:47

Orchard, my husband was two years older than you at diagnosis - you might find this interesting / useful?

http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED#post119001

 

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

User
Posted 10 Jun 2016 at 09:46

So the date is all set for the op, 15/6/16. The surgeon is an associate proffesor and has carried out the robotic procedure 100 s of times apparently and had several papers published on the subject. He's considered a pioneer in the field and has people refered to him worldwide. His results equal the best clinics in the world so I've been told. I guess if only half of that were true I'm still in good hands. Thanks everyone for all your comments ............ Lee

User
Posted 10 Jun 2016 at 13:15

Good luck for the 15th.. keep us posted!

KRO...

User
Posted 30 Jul 2016 at 08:30

Hi all, op done and all seems to have gone well. Been 6 weeks now and continence is fine and physicaly doing great. Had the review with the consultant yesterday who explained the path results. Slightly concerning because i've been upgraded from t2 pre op to t3 post op. This was due to a 4mm margin. Obviously dont have first psa results yet as blood was only taken yesterday, but does anyone have any post op experience of being upgraded due to small margins ( which i assume is how close the cells were to breaking through the prostate wall ).

User
Posted 30 Jul 2016 at 09:51

Hi mate

Yes I did. Did he say if you had positive margins. Did he mention any follow up treatment such as RT.

Read my profile to see my journey. My last PSA was 0.01

Bri

User
Posted 30 Jul 2016 at 10:13

Hi brian, dont recall any mention of positive margin or otherwise. He's now refering me to an oncologist. I was trying to find out as much as pos before that appointment so I understood everything and new what to ask at the time.
Thanks
Lee

User
Posted 30 Jul 2016 at 19:41

Lee
You can request a copy of your histology. If you wanted you could share it on here as without doubt there will be many men who will have had a similar histology. You could also discuss the histology with the oncologist.

It's interesting that he has referred you to oncology. They may be thinking that adjuvant RT would be appropriate due to the focal breech. If you read my profile you will have seen I had a focal breech and had follow up RT 6 months later. I'm now almost three years with no treatment and so thankful for that

Bri

User
Posted 30 Jul 2016 at 21:07

Lee

I am now 27 months post RARP, I had 2mm positive margins and extra prostatic extension. No one ever mentioned adjunctive RT to me, after 12 months of a  PSA of 0.03 it has slowly risen to 0.13, September is the next test and I am "possibly" heading towards salvage RT. There is of course the risk of side effects with RT at any time either adjunctive or salvage.

Thanks Chris

Edited by member 30 Jul 2016 at 21:09  | Reason: Not specified

 
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