Joe newbie

[Joseph6]

Just Diagnosed

Hi All I have just been diagnosed with T2 3.4 prostate cancer at 62 and am shxting myself, I have not yet been offered treatment but a nurse gave me a book on procedures,I am looking at surgery or brachytherapy but don't know which way to go worried about side effects, both have similar side effects one better then thee other.

Any advise experience welcome.

good luck everyone Joe

[tony194]

Hi mate - I can totally relate to what you are going through.

I am 51 yrs old and diagnosed in February T2 Gleason 9 (4+5) and cancer described as aggressive, high risk, high grade strain. I was sent home with leaflets and left to $hit myself for 6 weeks until bone scan and MRI results were in. Think I cried for the 1st 2 weeks before pulling myself together and starting to do my own research, which is a must.

I didn't qualify for Brachytherapy as my gleason 9 count was too high, but I did insist on meeting the Radiologist prior to deciding on De-Vinci RP surgery which was done 4 weeks ago. The surgery was text book so I am told and went well, but I went into retention after the catheter was released after a week and my nightmare began. I would defo recommend the surgery as I appear to be one of the unlucky one's. I have a leakage in the joint work, so the catheter was put back in until this issue is seen to heal. Now into week 5 with the catheter which is a chuffin nightmare.

I feel for you as the journey is like a roller coaster of emotions - at the minute, I am on a low at present, but believe me when that catheter came out after week one and for a short while everything appeared fine, I felt fantastic !

Keep in touch and if you need to ask me anything then feel free - not sure where you live but I am attached to this forum which gives additional info and support:

community.prostatecanceruk....

Best Regards

Tony (from Newcastle UK)

[Joseph6 in reply to tony194]

Hi Tony sorry to hear of your nightmare with the catheter,that is my main worry incontinence and ED,I have just seen an oncologist and she explained everything to me,the pro's and con's, she explained to me that Brachytherapy had the same results as surgery brachytherapy having a faster recovery as apposed to surgery, I am due to speak to a surgeon next week and talk to him about the pro's and con's of the surgery route, I have been reading a lot of peoples experiences and the general senses of opinion is get a good surgeon.

But as of yet I don't know what to do.

all the best Joe

[Joseph6 in reply to tony194]

Hi Tony194 after a few weeks now I have decided on surgery hope I am making the right decision,now comes the wait scared stiff of what is to come,how are you hopefully getting better after your catheter set back,but apart from that is everything else working.

All the best joseph6

[tony194 in reply to Joseph6]

Jo,

I'm in hospital today for 2nd Cystogram to see if leak has healed and catheter can come out. As far as everything working I cant say as ED and incontinence to come but early days. Some good news however as looks like all negative margins from pathologists report which was my biggest fear. I'm a Gleason 9 so to hear that the cancer was contained is critical. Looks like surgery was right for me despite the ongoing setbacks. I will keep you posted!

[Joseph6 in reply to tony194]

Tony194 Hope all goes well and you are all healed up now,on a positive note many of the stories that I have been reading of men who have had surgery are all getting better after a long journey, it seems we heal at a different rate.

Thumps up. Joe

[brucepos]

Hi Joe,

Pretty much the same position - I was diagnosed last Thursday T2, gleason 3.8. I'm 60 and was planning to take retirement in September and this is pretty awful timing! I'm planning on taking up the offer of active surveillance. I'm looking for at least a few years without the risk of incontinence or ED - I've a retirement lump sum and my wife and I are planning to make the most of it.

[brucepos in reply to brucepos]

I meant PSA 3.8 and gleason 6!

[Joseph6 in reply to brucepos]

Hi Brucepos

Pretty much the same took redundancy lump sum etc 15 months ago at the age of 61 and plan to tour europe in our motorhome never been sick all my working life then hit with this, I don't really have the option of active surveillance so looking at brachytherapy or surgery decisions decisions.

Life does suck.

Joe

[domani19]

Hi Joe the hard bit is deciding on treatment options but remember they will all be good at removing the cancer after a lot of thinking probably too much I am going for surgery. Lots of good luck. Ken

[Joseph6 in reply to domani19]

Hi Domani19

Don't I know one minute it's Brachytherapy then it's surgery vis versa the next minute, just can't decide yet.

good luck with your surgery Joe

[Joseph6 in reply to domani19]

Hi domani19 How are you have you had your surgery yet if yes how did it go? I to have decided on surgery after thinking about the alternatives, now worried sick never had an op.

All the best joseph6

[domani19 in reply to Joseph6]

Hi Joseph thanks for your reply I am due to have my op next thursday , so a bit panicked right now , hope you are got as date also ? best wishes Ken

[Joseph6 in reply to domani19]

Hi Domain Just trying to find a surgeon who does the da vinci method in kent. joseph6

[domani19]

Thanks Joe for your reply to me good luck also with dealing with the treatment options , remember they all will help you regardless which one you choose , I am trying to use the same advice to myself although I am a little concerned about making the correct choice for me , but seems it will be surgery best wishes Ken

[Joseph6]

Hi Bobjensen

How was surgery did you have many side effects and if so have they cleared up now,a good surgeon I've been told is the key to a successful outcome.

all the best Joe

[Joseph6]

Hi Bobjensen how long ago did you have your surgery and did your surgeon say the incontinence would clear up completley one day???

[Joseph6]

Hi All has anyone here had Brachytherapy if so what where the long term side effects?? I'm worried about rectal incontinence,don't much fancy that.

joseph6

[Joseph6]

Hi Bobjensen I have just had a meeting with my surgeon and he has explained everything the pro's and con's, the incontinence is an issue but he did say everyone is different but did say that incontinence takes up to 2 years to sort it's self out, you have to do the exercises very important I'm told.

All the best Joseph6

[domani19 in reply to Joseph6]

Hi Joseph , I am due for my operation next thursday so a bit panicked right now if I am doing the right thing for myself , hope you have managed to get a date for op also best wishes Ken

[Hidden]

Joe, just note that if you've been offered a prostatectomy, then the chances of being "cured" are good. I had one 5 years ago. I can't say much about incontinence since I count mine as insignificant.

As regards erectile dysfunction ED I can say a few things. Firstly, you need to find out as much as you can about it. Secondly, you need to keep 3 things in mind. 1) The powers that be in the NHS consider that men old enough to get prostate cancer aren't really interested in sex and then at most, once a week. 2) They consider ED as having "low clinical value" so any services to deal with it will not be well funded 3) your chances of erectile recovery will depend on you having a "nerve sparing" prostatectomy. Make sure your surgeon is going to do this.

THEN, you may not be interested at the time, it is recommended that "erectile rehabilitation" is started as soon as the catheter is removed! If you don't then the relevant tissues atrophy and the chances of recovery much reduced, use it or lose it. Get all the services you can. Best drug to my knowledge is daily low dose Cialis. Make sure it's daily i.e., 28 tablets a month. NOTE only a consultant can prescribe this, no good asking your GP. Insist on this rather than a "twice a week" alternative. (Even if you don't need it more than twice a week). Get a pump and be taught how tojuse it effectiuvely. Also try to get psychosexual counselling, there's a strong psychological element.

Doing all that will limit the ED aspect of surgery.

Good luck!

[Joseph6 in reply to Hidden]

Hi Timz thanks for the info sought have been told about the after effects and what to do,my biggest problem at the moment is finding a surgeon who does the Da Vinci surgery in kent

all the best Joseph6

[Hidden in reply to Joseph6]

Good luck with that. Let us know how you get on.

[Joseph6]

Well guys decided on surgery Da vinci going into hospital july 12 2017 not looking forward to it but eager to get this thing sorted and hopefully get back to as normal as can be.

joseph6

[Joseph6]

Hi Guy's Just an update had my surgery last wednesday 12 july at kent & canterbury hostpital surgeon Mr Benjamin eddy said all went well nerves spared,now going down the road to recovery have all post op ach's and pains catheter coming out friday 21st july fingers crossed that goes well can't wait to get rid, overall not to bad an experience wouldn't want to do it again, but I do think it is important to get a good surgeon still early day's but will keep you all informed of my progress.

All the best to you all joseph6

[Joseph6 in reply to Joseph6]

Four weeks post surgery aches and pains almost gone still a bit of bruising around testicles, I do sometimes have blood in urine but nurse said that's normal can take upto 12 weeks to clear,going for first PSA since op on the 21 august so hopefully results will be good also have some leakage when I go for a walk but ok when sitting or laying down, hopefully that will get better in time.

all the best Joe