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User
Posted 18 May 2018 at 14:46

I have posted already in another community, but as I am having a gay relantioship I wondered here I could share something of my story and get something of others' stories from fellow friends.

I am 49 years of age and have a partner but I find these communities best ways of sharing fears and anxieties as well as bravery and happy moments

I only found these communities after my decision of treatment, which was very difficult. Also in my country, believe it or not, I don't find people wanting opnely to speak about this problem and definetly not gay people.

As quick as I could and thought I needed I saw a few doctors and specialists to support my decision. Before that I did ultrasound, MRI, biopsy and PET exams.

I decided for a robot surgery and my doctor is advising me for an adjuvant RT depending anyway on the pathological report.

I have a gleason 8 (4+4) lesion n0m0 likely t3a. My psa was 12,7. MRI and PET showed no seminal vesicles and lymph nodes invasion and body scan was also free. However MRI feared there was tumor on the capsule already.

Surgery was on April the 5th. A month after surgery I became aware of the pathology report:

It is a pT2. So no extra-capsular invasion after all and it is of the usual acinar type. No seminar vesical nor lymph vascular invasion nor ductal invasion. No chirurgical margins involved except one on the right side in the apex with 1 mm. Doctor said that till 3 mm it would have no statistical impact ... Lymph nodes (18) removed also cleaned. However confirmed a Gleason 8 and it was a big thing in both 2 sides of the gland.

Doctor said, opposite to initially thought, it turned out to be not so bad and he is not so convinced of adjuvant treatment right after surgery anymore unless the PSA says otherwise. So next step is check PSA in July 2018.

After 3 days completelly continent when catheter was removed, I started having leakages on day 4 and they haven't stopped so far. I don't see a positive trend till today, but as the healing process moves and I fell myself better I move myself more, I walk more, I do more things and maybe this is the reason why I don't sense any improvement unfortunetely.

I am taking cialis from day 10 after surgery and - precribed by doctor - and I know now what an orgasm without erection is. They were very weak though in the beginning, but have been getting better over time.

Thank you all,

Paulo

 

Edited by member 30 Jun 2018 at 00:14  | Reason: Not specified

User
Posted 22 May 2018 at 16:17
Thanks
User
Posted 01 Jul 2018 at 13:45

Hey Paulo:

Glad to hear you are making good progress. Having the leakage be much reduced is a wonderful thing. I'm sure the erections will continue to improve. It looks like we are on a similar journey. My leakage is also improving, has been much reduced but still isn't gone yet. My weekends are also worse and this is likely because I have a few glasses of wine on the weekends.

Erections are getting better but not back to normal and my orgasms have been good/normal feeling - but as we know they are dry.

Have not tryed anal penetration yet, will be checking with my doctor to see if we can have anal sex yet or not. Although I want to try, I am nervous it will be painful because of the surgery/continued healing. 

I understand the worry about the follow-up psa. I had my first follow-up psa about a month ago and it was thankfully undetectable. My next psa is the end of July and it does make me a bit anxious. I guess we will need to continue to cope with the nervousness that will come with ongoing follow-up/psa testing.

Sending you continued positive thoughts for ongoing recovery/improvements with leakage and sexual function.

Best regards, Doug.

 

User
Posted 02 Jul 2018 at 15:34
Hey Paulo - Yes, when having a PSA I avoid sex for a few days, not sure we need to do that now that we don't have a prostate. We should also ask our doctors what they say about that. Good luck with your PSA test tand have a good week. - Doug
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User
Posted 22 May 2018 at 16:17
Thanks
User
Posted 29 Jun 2018 at 03:12

Hey Paulo: I am 52 years old, diagnosed with Gleason 7 (4+3) and had prostatectomy in March of 2018. chopping with leakage and ED. Both are getting better. Married to a 52 year old man who is very supportive and loving. That being said, life is different and I am struggling to find our new normal. Hope you are doing better and better. Sending positive thought your way.... - Doug. 

User
Posted 30 Jun 2018 at 00:12
Hi Doug,

Thanks for your reply and positive thought :-)

Hope your surgery has been successful and the side effects improve more and more.

I have a partner of 48 who has been supportive and patient as your husband. So I guess we are both lucky. This is important to help us go through this.

Since my last post I improved greatly and I have hardly any leakages now. For 2 weeks in a row now that I have zero or close to zero leakages during week time. During weekend it gets a bit harder but still really not comparable to what it was a month ago. I feel now this nuisance will definetly go away.

ED has improved also, but this part I am a bit more patient and expect recovery for later hopefully. I am also using a pump every day. It is not a fun process, but it is manageable. I only get a hard erection very close to reaching orgasm and last very short.

How is sex doing with you? I allowed anal penetration first time last week and it worked all right :-) after some inquiries and ok from doctor we tried and no pain or discomfort. So healing inside there must be going on ok too.

I have my first PSA test next week, so anxiety is increasing again...How is it with you?

Let's keep in touch and hope for more information about yur situation.

Wish you all very good in your recovery as well.

Take care,

Paulo

User
Posted 01 Jul 2018 at 13:45

Hey Paulo:

Glad to hear you are making good progress. Having the leakage be much reduced is a wonderful thing. I'm sure the erections will continue to improve. It looks like we are on a similar journey. My leakage is also improving, has been much reduced but still isn't gone yet. My weekends are also worse and this is likely because I have a few glasses of wine on the weekends.

Erections are getting better but not back to normal and my orgasms have been good/normal feeling - but as we know they are dry.

Have not tryed anal penetration yet, will be checking with my doctor to see if we can have anal sex yet or not. Although I want to try, I am nervous it will be painful because of the surgery/continued healing. 

I understand the worry about the follow-up psa. I had my first follow-up psa about a month ago and it was thankfully undetectable. My next psa is the end of July and it does make me a bit anxious. I guess we will need to continue to cope with the nervousness that will come with ongoing follow-up/psa testing.

Sending you continued positive thoughts for ongoing recovery/improvements with leakage and sexual function.

Best regards, Doug.

 

User
Posted 02 Jul 2018 at 11:07

Hey Doug,

Thank you for your post.

True when having wine I instantly have more leakages, particularly red wine... Well I am trying drinking at night so that I have a night sleep that calms down the bladder again.

About anal penetration, I had again and I didn't feel any pain. You should ask your doctor anyway as I did. This would be the better advise.

I am having my PSA wednesday this week. Do you abstain from sex for 2 days before the PSA test?

Best regards,

Paulo

User
Posted 02 Jul 2018 at 15:34
Hey Paulo - Yes, when having a PSA I avoid sex for a few days, not sure we need to do that now that we don't have a prostate. We should also ask our doctors what they say about that. Good luck with your PSA test tand have a good week. - Doug
User
Posted 02 Jul 2018 at 15:50
Surely with an absent prostate there is nothing to stimulate, and therefore nothing to affect PSA levels whatever you get up to........
User
Posted 02 Jul 2018 at 22:47

Thanks Bollinge, it makes absolutely sense.

 
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