Hi Raiden,
And welcome to the site where none of us would have opted to join or need if we had the choice. That said, now that you are here you will fond this a really useful place for help, information and above all support. Well done on pursuing a diagnosis, pity it took awhile to get sorted. No matter, you now have to deal with what you have.
The good news from your stats appears to be that the cancer is contained, and with a low PSA and a contained cancer, that puts you in to the "curable camp" as far as I am aware.
You may have decided that Robotic Op is your way forward? I would not try to change your mind, the only person who will have to live with the consequences of your selected treatment option, is you.
I had the robot in May 2013, did not go as advertised, but I would not change my mind if I could have my time over.
Sex life does not necessarily end, it may become different for a while, maybe a short while, may be a longer while, it may become as it was after a short while. No one can predict how your body will react.
The only guidance anyone can give you is that you may get all or some use back within up to 2 years, although some men continue to recover beyond that that.
Continence or lack of it is not guaranteed to be affected or not affected, that again depends on your body, and the skill and luck of you and your surgeon.
Don't feel terrified, we have all been where you are now and eventually you will come to terms with what is happening and you will start to deal with it calmly and rationally, honestly. I was terrified when I was diagnosed, totally natural reaction and feeling.
The important things to consider is, what is your prime aim?
Most men here choose life as the first side effect they would like from an op.
Secondly they would like urinary control
Thirdly some sexual function.
Bear in mind that dead men do not complain a lack of sex life or urinary incontinence. The fact that you are ding something about it is a good move.
Do you have male relatives about your age? Might be worth telling them if you have not already?
As I said earlier, you are never alone. You can ask anything you like here. We are all in or have been in the same position that you are now at some point.
atb
dave
Edited by member 21 Jun 2015 at 23:20
| Reason: Not specified
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Hi Raiden,
I am just dropping in to say Hi and welcome, the others have given you some brilliant advice so far, one thing that I would like to add is about the freezing of your sperm as you say you already have a son so this isn't a top priority but looking to the future you may meet the love of your life and children maybe a priority for her , also you may decide that you would want to have more children with the right person. So just a thought none of us know what the future holds and even if you never used that sperm it would be there just in case. I have heard it is a fairly quick procedure and not at all painful http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif. You are still a young Guy with lots of life yet to live.
Keep us updated with your journey (we are all a bit nosey). If you click on peoples avatars then you can read our individual Bios , as CB says your prognosis looks very good (I know that sounds weird) but as you start to gain knowledge of this disease you will understand as for saying that you must be a bad person to have had the bad luck to have a second dance with the big C , well I simply can't believe any one with your smile could be a bad person. It is just sometimes the way the cookie crumbles. We are all here for you .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Raiden,
Sorry to see you here, especially as this is cancer number two for you. From your stats though it look like you've got a very good chance of many more years ahead of you, and as a fellow "doubler" and two years post Da Vinci, life's still pretty good. So, take up the challenge again and push on through!
Flexi
Sent from IPad whilst hiking in The Canadian Rockies
Edited by member 22 Jun 2015 at 20:54
| Reason: Not specified
User
Originally Posted by: Online Community MemberThe toolkit that is being referred to is the PC UK one, you can request online and they will send it in the post. Not sure if thats the one you have already? It's a black folder with loads if booklet inside.
Yes that must be the folder I have, I read everything the very first night and found it very informative indeed.
User
Originally Posted by: Online Community MemberJust a thought on the freezing of sperm. When I had testicular cancer the norm then was to insist on a vasectomy. I had started RT before the social worker came along and said was I offered the ability to freeze sperm. I hadn't been and with RT in motion that was it. I figured I had had a daughter and my son was on the way and so it was not going to be an issue. Just three years later I was a single parent of two very young children and if another relationship had come along where having children was important to my partner I could not do it.
As it happened it was enough to be single parent but it would have been nice to have the choice,
Hi Yorkhull
That is something I do seriously need to consider once again, I guess it is selfish of me to think only of me, I need to think of others too and the possibility of a new partner.
Maybe banking something and never using it, is better than not banking anything and wishing I had.
Thank you
User
I note that in your first post you were almost discounting RT on the basis that if surgery fails you can have RT but if RT fails you can't have surgery. There are two things to note:
- it is almost true that you can't have surgery after RT - we do have one member that has had it this way round but generally speaking, it woulds be hard to find a surgeon willing to do it and the side effects tend to be much more guaranteed, partly because surgery after RT can't be nerve-sparing. It is also less likely to be successful as it is much harder to remove a mushy splodge of irradiated gland without leaving any behind.
- however, the thinking that surgery gives us two bites at the apple is flawed. Even with surgery followed by RT, the outcomes are poor. Not because RT is difficult after the op but because statistically, anyone who needs salvage treatment for PCa is less likely to ever get true remission.
The sensible thing is to focus on the treatment that you and your medics believe will give you the best chance of a cure; to my mind, choosing a treatment based on the choices left if it fails is like wearing plastic bags on your feet in case your boots leak rather than buying waterproof boots.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
The term one time use for the night bags is a bit deceptive, the bags are actually Ok to use for 3 - 5 nights or more, the ctiical bit is to keep the catheter site entrance clean and to do the normal hand washing stuff after emptying, attaching etc. Lyn has made a really important point and I would always recommend using the night bag even if it were for that reason alone.
xx
Mo
User
2nd nights sleep.....
The district nurse came back round last night and gave me some more night bags so I now have enough for the 10 days, which is better.
Putting the bag on last night was a real struggle, the whole bending down is not easy with everything pulling, but I got it on and looking this morning it was a success, all the waste was in the night bag that I rested in a bucket beside my bed, and I didn't have to get up through the night which was a bliss.
Realising that so much of my every day life and movement relies on my tummy muscles I have swallowed my pride and asked for help, My brother is travelling from London to Liverpool today to spend a week with me, I will be so glad of the company and support, there are so many little things I just cant do. Its made me realise how lucky the men are with wives are partners who support, love and look after them. Its put a lot into perspective for me.
I brought one of those claw pick up devices which should arrive today from Amazon, that might help when I drop things or to grab things out of my reach.
I didn't sleep to well last night, kept waking up every couple of hours and was dreading getting out of bed this morning as it pulls and stings so much on my tummy, I am worried I am going to tear something, but I did manage to get up this morning and it wasn't to bad at all. Once this catheter is out it should be easier as I will have more leg movement to support myself.
I am keeping myself nice and clean, as I always do, although I do feel a little bit of stinging around the entrance but I am told this is normal, and although I had some kind of discharge in my undies on the first day I was out of the op, I don't have anything new, so I am hoping all is ok with it. Counting down the days until I can have it taken out.
My thoughts and thanks are with you all, especially Trish and Stuart, hope all goes well today with the op.
x
User
I was so pleased that my good lady was around to put my night bag on and take it off again in the morning. At night I would just flop into bed and she hooked up the night bag. If your btother can help with this it will make life easier. It shouldn't be so long before you feel fit enough to change your own.
I hope you are not having any problems with constipation. That was a real concern for me until I got some liquid dynamite to shift the backlog.
THE CHILD HAS GROWN, THE DREAM HAS GONE |
User
Originally Posted by: Online Community MemberOriginally Posted by: Online Community MemberFirst time..
Well I felt a bit of stirring so thought I would try and go for a number two (sorry)
I could sit ok on the toilet but noticed small leakages coming out the end of my willy while I was sat there waiting to go. This has worried me so I got back up again without doing anything.
Is this normal? The catheter is still working ok with fluid going fine into the bag after I tried the above.
Hi Raiden,
I've been away for 5 weeks in the caravan so not been on here lately http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
Leakage can / does occur when passing a motion sometimes...... as long as urine is still draining into the bag there is nothing to be concerned about...
I used to wrap some toilet paper around the catheter exit area to soak up any leakage when doing number two's..
Hopefully your catheter will be removed soon and won't have to put up with this situation for very long...
Best Wishes
Luther
Hi Luther
Thank you for replying that's a great help to know it can happen and it's nothing to worry about.
I did wrap some toilet paper around the end when it was happening and will do again when I try again.
I'm hoping its removed next Thursday, think it will be so much easier once that's gone.
User
Steve
Give the district nurse a call and get her to bring you some movicol. Tastes rotten but does the job. And why are you not eating? You need to be eating, even if it's only a bit. Weetabix is always good.
User
It happened last night...... :)
Took quite a while to get going but the main thing, it happened :)
I felt so relieved afterwards and although it was very awkward to go it didn't hurt too much.
Think I might brave some toast this morning, as I love my toast and have missed it so much.
The fruit went down a treat last night.
Happy Sunday to you all
X
User
Raiden,
your bladder/urethra muscle has been clamping shut, as far as it is concerned, on a catheter pipe. removal of that pipe means the the muscle has to learn again to clamp shut to a new zero, itself, just like when you were a baby.
It will take time, may be weeks, maybe months, may be years. It is beyond your control. Took me 7 months to go completely padless.
Give it time, be a patient patient.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
Show Most Thanked Posts
User
Hello Raiden
I'm the wife of someone who was diagnosed recently: PSA 19:7, T3a, Gleason 4+3, low volume but bulging - so similar to you.
He was given 3 options: da Vinci + hormones, radiotherapy + hormones or hormones, radiotherapy & brachytherapy, he chose the final option. There was much research done and several visits to meet with urologists and oncologists before he made his decision, there was no pressure from the hospital to decide "on the spot".
The men on this site have made their treatment choice to suit them personally, you need to do the same - look at all of your options before you make your final decision. The PCUK specialist nurses are very knowledgable and helpful so if you want some impartial input give them a call.
If you click on my profile you will see my husband's history, there a quite a few wives / partners on this forum - my husband is IT phobic!
Wishing you luck with journey, keep posting.
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi Raiden , and thanks for ure message on my post. I'm so sorry this has happened to you and that it is the second time u have faced cancer. You have done exactly the right thing joining this site. Wonderful wonderful people with so much knowledge and experience. Once the initial panic has subsided make sure you download the toolkit from the site and read it back to front. And go through all the threads that relate to ure specific concerns. Everyone on here will help you get thru this with support
Chris
User
Hi Raiden,
And welcome to the site where none of us would have opted to join or need if we had the choice. That said, now that you are here you will fond this a really useful place for help, information and above all support. Well done on pursuing a diagnosis, pity it took awhile to get sorted. No matter, you now have to deal with what you have.
The good news from your stats appears to be that the cancer is contained, and with a low PSA and a contained cancer, that puts you in to the "curable camp" as far as I am aware.
You may have decided that Robotic Op is your way forward? I would not try to change your mind, the only person who will have to live with the consequences of your selected treatment option, is you.
I had the robot in May 2013, did not go as advertised, but I would not change my mind if I could have my time over.
Sex life does not necessarily end, it may become different for a while, maybe a short while, may be a longer while, it may become as it was after a short while. No one can predict how your body will react.
The only guidance anyone can give you is that you may get all or some use back within up to 2 years, although some men continue to recover beyond that that.
Continence or lack of it is not guaranteed to be affected or not affected, that again depends on your body, and the skill and luck of you and your surgeon.
Don't feel terrified, we have all been where you are now and eventually you will come to terms with what is happening and you will start to deal with it calmly and rationally, honestly. I was terrified when I was diagnosed, totally natural reaction and feeling.
The important things to consider is, what is your prime aim?
Most men here choose life as the first side effect they would like from an op.
Secondly they would like urinary control
Thirdly some sexual function.
Bear in mind that dead men do not complain a lack of sex life or urinary incontinence. The fact that you are ding something about it is a good move.
Do you have male relatives about your age? Might be worth telling them if you have not already?
As I said earlier, you are never alone. You can ask anything you like here. We are all in or have been in the same position that you are now at some point.
atb
dave
Edited by member 21 Jun 2015 at 23:20
| Reason: Not specified
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Hi MLJ
Thank you for saying hello and for the information.
They said that because of my age brachytherapy would not be an option and because I have this bulge which they also said they could not guarantee plantation on the seeds where the bulge is.
Its very difficult to decide on the right choice even though I do think Da Vinci would be my best option especially as I would loose the Da Vinci operation as an option if I chose radio first and something did not work or I relapsed later on.
I have a meeting on the 26th with both doctors and have written my questions and concerns on both options to take with me.
How is your husband getting on?
User
Hi Chris
Thank you again
Its only been an hour or so and already I now know I am not alone any more.
:)
User
Hi Raiden
With what you have gone through at such a young age I can see why you want it out but do advise you have those meets before finally deciding.
Some of us I have done a short cancer course. That reinforced my view its mostly down to bad luck and certainly not punishment so try to let go of those thoughts which will only drag you down at a time when you need all the positivity going.
You are not alone here
Good luck to you.
Ray
User
Hi Raiden,
I can completely emphasise with you as I was diagnosed in November last year and had my prostate removed 3 months ago tomorrow. It's scary. The online nurses on here are really good to clarify any medical points you are unclear about. I found them really useful at the begining of my treatment.
Please have a look at my profile. I know your young but that is on your side as your recovery rate should still be good. Read all you can but there will come a time when you will need to decide on a treatment option and only you can do that.
Take care,
Paul
THE CHILD HAS GROWN, THE DREAM HAS GONE |
User
Hi Countryboy99
Thank you for taking the time to read my post and to send me a message.
I think your 3 side effect options are definitely in the right order, but I do worry a lot about the sexual function. Only because of my age and the fact that I have never married but always hoped to one day. But right now the most important aspect is to get rid of this disease inside of me, that the number one priority, the other stuff I will just have to deal with it the best I can.
They have offered me tablets, pumps, implants etc but that entire world is all new to me and not one I am willing to spend time on looking at until such a time post operation or treatment.
May I ask what didn't go to plan with your Da Vinci? Its ok if its personal.
User
Thank you Ray
which option did you go for?
User
Hi Paul
Thanks for the reply
How do you feel post op?
I will certainly go and read your story now.
User
Raiden,
I am fine. Incontinence is negligible just a little stress incontinence. No movement in the erection department but it's early days and I may need to look at pumps and medication.
I still get tired easily but some of that I think is due to post op lethargy making me lazy.
Paul
THE CHILD HAS GROWN, THE DREAM HAS GONE |
User
Hi Raiden,
Just wanted to follow Ray's comment that getting cancer is just one of life's cruel twists not anyone's fault but your Intial prognosis sounds good as they feel they can 'cure'. I am in my second cancer too, having had testicular cancer 33 years ago and just went I thought I was ok along come PCa. This time I have an incurable version so cannot give you specific advice re surgery or RT as it's not offered to me but I can say I am still here 3 1/2 years on, So there are plenty of tools in the box. It is frightening as you set out on this unwanted journey but there is lots of support here, so keep asking questions,
User
Hi Raiden,
If you read my profile, I documented my life after the op. I have no idea how to find it though? It was on the old site.
The Robot option leaflets and promo material suggest that you will be in and out of hospital within 2 days. I was in for 5. I was discharged at about 3pm and back in by 7pm for another 2 days. Had a lot of plasma in my drain bag apparently.
Still would not change my choice though. Looking back, no matter how bad I thought it was at the time, it could have been worse, and I would still have coped.
There will be a stage where you do come to terms with what you are going through, and when you do, you will be calm about it. Happened to me about a year or so ago, just became calm about PSA tests and the urinary control issue and the sexual function issue. Now dry, unless I road run, so I don't. Have not worn a pad for about 15 months. Sex is great again, first normal orgasm by sexual intercourse was 6 months after the op. Haven't looked back. And I am an old bloke, so you will probably be recovering better and quicker in all areas.
Getting your head around the issues is the key to dealing with it all better and more rationally. But that may take some time?
One phrase we often use in various forms here is that there is no point worrying so much about tomorrow that you forget to enjoy your today.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Hi Paul,
Thank you
How long did it take to get the incontinence under some sort of control?
I had a PM earlier from one member on this forum who said a pump turned everything around in that department which otherwise was not moving on it own.
User
Hi Yorkhull
Thanks for the post.
3.5 years on, well done to you sir. So we are both double C men, never did I think that I would get a different type, I always feared a relapse of the first but this has really bowled me over.
Keep being strong my friend
User
Hi Countryboy99
Thanks for that.
I will keep what you have said in mind and will look out for those things post surgery.
Could I ask you a couple of questions?
1: How long from your meet with the surgeon was it until you had the actual surgery?
2: With the incontinence at its worst is it just leaking or is it like a full on wee when you need to go? Does one feel the need to wee like I do now or does that disappear?
3: I have read it becomes a dry orgasm as in no liquid at all, do we still feel the sensation of an orgasm or does that change? (sorry I didn't know how else to put it into words)
4: I am confused about post op PSA tests especially as there is not prostate in the body on people who opt for the surgery? I have this as a question to ask.
User
1. about 5 -6 weeks.
2. initially it was hard to control, and I was using 3 to 4 level 2 pads per day. I used to give up in the evenings and "bag up". Put a conveen sheath on with a leg bag and relax and pee into the bag when I needed to. This gave me a break from constantly going to the toilet and let me sleep through the night. Others may have chosen to persist with pads etc. You will have to see what works for you if and or when you have a problem. I did what I gelt was best for me. Same with the post op meds, I experiment a bit. No pads since about January 2014. No problems, unless road running.
3. dry orgasm, just as intense with the muscle contractions and the robbing etc. Just dry. No damp patch. Have you considered sperm freezing with anyone yet so that you can have children in the future?
4. as I understand things, the post op PSA tests are to ensure that if any part of the gland is not removed, or if a cancerous cell is out there in your body somewhere it is picked up quickly and any other treatment options looked at, and applied early.
And please don't worry about asking anything, we are all in the same boat and you will get some ladies on here better qualified than us men to answer some of your questions in due course no doubt.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Raiden
My husband is doing fine thanks; no mood swings, man boobs or hot flushes yet!
Our hospital have a prostate support group meeting every month, it may do you good to get to one of these as you'll be able to ask people who've had treatment any thing that you need clarified - there is also a prostate radiologist and specialist nurse present as well. If there's not one held at your hospital search for a local one on this site.
M
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi Raiden,
Very bad luck that you have had two kinds of cancer and at such a young age.
Many people regard Prostate Cancer (PCa) as a disease of old men without acknowledging that some men, albeit a minority, are diagnosed with it under 50. Some GP's are reluctant to test men under 50 and in some men even older unless they exhibit the symptoms of PCa (and by this time the PCa can be already advanced).
But notwithstanding what should have been done or might have been done earlier, you now have to consider what is the best way forward for you. All treatments for this disease have potential side effects and one of them is Erectile Dysfunction preventing normal sex. You have to face the possibility that sex after treatment may be different in the short or in some cases the long term. If you have surgery much depends on the skill of the surgeon and whether the location of the cancer enables him to save nerve bundles. Some men who have difficulty having an erection use prescribed drugs to help achieve this and or use devices such as vacuum pumps or penile implants etc. Radiation treatment treatment can also result in Erectile Dysfunction and HT in a loss of libido. Treatment can be a trade off for eradicating the cancer or restraining it. I say can be because some men are not greatly affected sexually by treatment.
A good idea on your part to prepare a list of questions to help you decide the treatment you opt for. This may be one treatment or a combination of treatments. I take it you have done your research on treatments and have read the 'Tool Kit' on the main part of this site. Another good place to explore is the YANA site (You are not alone now). It was started by an Australian, Terry Herbert who sadly passed away quite recently having had PCa for many years. It has attracted members from many countries and is well worth working your way round the site http://www.yananow.org/
Do ask any questions that come to mind. We are not clinicians but accumulatively members have a lot of experience.
Barry |