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Experience of others please

User
Posted 16 Jun 2018 at 14:58

Hi All I am new here after only been diagnosed with PC on 12 June 2018, I have PSA of 9.1 and a Gleason Score of 7 (3+4). It is localised with no spread to Lymph nodes. Have been given option of robotic-assisted radical prostatectomy or Radiotherapy.


Being a gay man that is sexually  bottom only, can anyone in similar situation advise on what would be best path to take please.


Rob


 

User
Posted 19 Jun 2018 at 21:36
My husband has had no problems from RT either but if you are one of the unlucky ones, RT is probably going to have more of an impact on you than RP would. Plus, that man may not have wanted to discuss really embarrassing side effects with his daughter :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 16 Jun 2018 at 21:15

hi, I have no experience of this but I have read that Radiotherapy can shrink the colon and cause quite a few bowel problems.  Whereas I had an operation and, it might be coincidence, but my movements are better since.  So maybe getting the prostate out of the way helps from that point of view and maybe others.  Perhaps someone else will know more about that.   Regards

User
Posted 17 Jun 2018 at 00:02
It would be worth you giving the PCUK nurses a call at the number above - they may be able to put you in touch with a man that has been in a similar situation. They did have a member of staff who was driving the GBT developments for the charity but I just checked and he hasn't logged on for ages so I guess he left.

Both treatments could affect bottoms since one removes the prostate and the other turns it to mush - depends how central the gland is to your sexual response. Henry or one of the other gay members will hopefully post or message you. In terms of messiness, RT could be the riskier treatment since radiation damage to the bowel can lead to diarrhoea and / or mucus - not all men and not constant but it is a risk to be considered. I think a top might consider surgery to be the greater risk and bottoms would be more leaning towards surgery.

Is there a GBT prostate support group near you?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jun 2018 at 12:15

Hi


Thanks for replies so far, I was begining to think myself that surgery may be my best option after reading about the side effects, some of which might not be apparent at first. I do have an appointment coming up with radiotherapist in the next couple of weeks to discuss, so will decide after that.


Rob     

User
Posted 18 Jun 2018 at 12:42
I would imagine that with a radical prostatectomy your prostate g-spot would be gone forever, but some others here report “dry orgasms” post-RP, presumably achieved via penile and possibly anal sphincter stimulation.
User
Posted 19 Jun 2018 at 12:05

Hi Rob,


I had surgery 2,5 months ago and my recovery has been ok. I am actually questioning myself when can / should I allow anal penetration. So I can tell you in a few weeks how I am going. I don't know how long you can still wait till your decision. So, I am not certain how helpfull I might be for you, but happy to provide more feedback about my experince and motivation if you want. Ler me know.


I am versatile tending bottom, but I have chosen treatment based on other aspects to be honest. I thought about side effects, PSA accuracy after treatment, possibility of salvage treatment... 


Paulo

Edited by member 19 Jun 2018 at 12:05  | Reason: Not specified

User
Posted 19 Jun 2018 at 21:30
Hi Thanks everyone for replies so far.
Paulo it would be great if you can give me more information of your experience. I too am thinking surgery might be my preferred option due to the side effects, I’m thinking of radiation giving problems to back passage and the bowel. I am bottom only so not so bothered about getting erections firm enough to penetrate myself but being able to still be penetrated is important to me.
Talking tonight to an old work colleague her father had radiation therapy and not had problems, so I’m left with mix feelings again.
I see the surgeon Monday and hopefully the radiation therapist later in the week to discuss more.
Rob
User
Posted 19 Jun 2018 at 21:36
My husband has had no problems from RT either but if you are one of the unlucky ones, RT is probably going to have more of an impact on you than RP would. Plus, that man may not have wanted to discuss really embarrassing side effects with his daughter :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jun 2018 at 11:33
Hi Rob,
I had this surgery with DaVinci robot mainly because I would feel reassured to remove the tumor with the prostate. I know this is not always like that, but at least for me I considered I might had the feeling I could control more if the disease would develop. Also I rather wanted to deal with the side effects now than later, which is the case for surgery and not always for radiation (I mean I was told side effects after radiation therapy start to appear later).

As for what is worrying you more in your decision I am afraid I don’t have so many answers yet as I told you I had surgery only 2.5 months ago. My recovery has been ok though.
I am almost continent now. I had already days with zero leakages over the last 2 weeks. If you go via surgery route I advise you to start the Kegel exercises a few weeks before the surgery and get back with the exercises as soon as the catheter is removed. Something very important, at least for me it worked a lot, do the exercises while walking.

I don’t have a firm lasting erection yet, but I am sensing improvements. The erections last for a very short while and are very close to the orgasm. I am very disciplined in all I do, so always using a pump almost every day now. I am taking a 5 mg Cialis pill a day and a 200mg Avanafil pill once a week. And estimualting myself everyday when the partner is not there. I am patient and hope time will heal the ED too.

Very recently I have been questioning when to allow anal penetration again. After hearing / reading other guys experience (in the US there is a forum like this for gay people, in Portugal I don’t find any and here in UK you are the first I am talking to) I concluded I could start anal penetration after 3 months of the surgery. There are people who say we should allow the body to heal a longer period, but the majority said 3 months would be enough. We just needed to be careful and have a partner that would know your situation and do it carefully. If we had any pain, we needed to stop and allow longer time to heal. I also found the courage to ask my doctor and this week he told me that I could start my regular sex life. So I did. Yesterday it happened and I tell you it was good, no pain and it was pleasurable as before. I can tell you more in a private email chat if you want. For more information I also need to experience as time goes by as all is new to me too.

My anxiety now is actually more related with the PSA test I will be doing early July.

All the best to you,
Paulo
User
Posted 22 Jun 2018 at 17:51

Hi Paulo 


Thanks for reply, I would have replied privately but it wont allow because i haven't been a member long enough. My email is robway1960@yahoo.co.uk if you would like to message me. Its good to hear you are recovering well and the important things are showing signs of improvement.


Im seeing surgeon next Monday and oncologist wednesday to help make me decide which route to take but do think it will be surgery i go for, Im not sure how long i will have to wait but going on how things have moved already it wont be long. Its reassuring to know that after two and half months you are able to accept anal sex.


Take care 


Rob


 

 
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