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User
Posted 30 June 2016 08:20:02(UTC)

Hey all,

I'm Andy, live in Yorkshire and I'm now 49 - I was diagnosed in April 2016 when I was 48 and I had RRP in May 2106, I am now nearing 6 weeks post surgery.

My diagnosis came from a 'stroke of luck' and for that I have to be eternally thankful... We moved house in August 2015 and I had to move to a new GP surgery, as part of becoming a new patient I had to undergo a routine and straightforward medical screning... This involved blood pressure, do you smoke? how much do you drink? etc etc I also had to do a pee sample and this is where they found a 'trace' of blood in my urine... After 2 more samples returned the same result I was referred to Urology and at the beginning on 2016 the journey began!

I had just about every test, scan and examination known to man including a cystoscopy, mri, bone scan and of course the prostate biopsy!

My surgery happened very quickly, I met with the consultant surgeon on the Tuesday and was advised 4 - 6 weeks surgery wait but then on the Wednesday I received a call to say that I was to have the operation on the Saturday afternoon (FA Cup Final day!)

The week after the op I did feel pretty rubbish and that probably continued until I had the catheter removed 10 days post op, I also had the staples removed the same day and felt like a new man!

The incontinence is getting better, no where near being completely dry but I have set myself a target of end July (might be too ambitious!)

Unfortunately we had to cancel our summer holiday to Greece but we hope to go later in the year!

That pretty much brings me to present day...

My stomach is sore around the main scar (just above my belly button), it is really hard and quite warm - I have spoken to the hospital and I am awaiting a call.

Apart from that I feel completely lazy, I am lethargic and I find very little of interest - my employers have been very good, I can work from home when I want though I have been going into the office for a few hours each morning.

I feel like I need to give myself a 'big shake' but I don't have the energy which frustrates the life out of me!

From a ED aspect there is nothing to report, absolutely nothing, not even a twinge which again frustrates me though not even being 6 weeks post op I suppose I have to be patient with that - I spoke to Oncology Support and the nurse said not to worry and that my consultant would discuss options with me when he sees me (8 weks post op), I have been looking at buying a pump and found this one; Tracey Cox EDGE Ultimate Performance Stamina Penis Pump but I seriously have no idea, sounds like more of a sex toy than an ED aid!

Recomendations welcome!

I hope my post isn't portrayed as all 'doom and gloom', like I said at the beginning I regard myself as being extremely lucky and if I am given the 'all clear' (in that my PSA level is the lowest it can be) when I see my consultant in a few weeks time then I will have been given a new lease of life!

I have enjoyed reading other people's posts about various aspects of PC, I still have lots more to read and so thought it was worthwhile me introducing myself!

All the best and keep fighting!

Andy

 

 

 

 

 

User
Posted 01 July 2016 11:50:22(UTC)

Hi Andrew,

At 41 you are very young to have been diagnosed...

I'm assuming that you are having the RRP (robotic) surgery?

I was very nervous too though I didn't have many days to get really worked up, I found out on the Wednesday that I was having it on the Saturday...

What I will say is that everyone you will come into contact with (at the hospital) have vast experience with us men and the surgery, they will put your nerves at rest and before you know it you will be back on the ward resting up, yes you will be sore but they will have you out of bed and walking (shuffling) the next day... All being well it's just 1 night in the hospital and then home to your own bed!

The first week you will struggle to do much for yourself so having someone there is important but I was still managing to get myself around the house just to stretch the legs - the weather was ok in that first week so I even mananged to sit outside for a few mintes morning and afternoon!

It is normal to be apprehensive but I assure you it is fine and hopefuly it will mean you are free from this rechid disease!

All the best and keep us updated!

Andy

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User
Posted 19 August 2016 12:18:10(UTC)

Hi Chris,

I only had 3 lymph nodes removed but they were all diseased so the assumption is that is where the remaining (microscopic) traces are, however, as I stated yesterday, I am having an MRI scan (on a Sunday of all days) to ensure that my current back pain is not related!

All the best!

Andy

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User
Posted 28 March 2017 12:35:57(UTC)

Hi Andy
You have had shed-loads of treatment in 10 months. Well done indeed for manning up to it all. I guess it will take quite a while for your body to settle down. Continence should continue to improve. Your nerves have had a right old bashing to be honest from surgery AND radiotherapy. I'm only getting good now at 21 months and that's without RT. I guess the biggest hurdle is HT and lack of libido etc etc. My diagnosis as you know is extremely similar to yours , so please keep in touch. By the end of April I should know exactly what is happening in my body and find a way forward , but I have to say in all honesty I'm planning on QOL rather than drag it all out feeling rough. I'll wait for options.
Keep fighting and best wishes




If life gives you lemons , then make lemonade
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User
Posted 30 June 2016 08:48:27(UTC)
Hi Andy
Welcome to the forum, you are one of our younger members and I love your attitude. I think you are lucky to have been diagnosed early as it does seem the younger you are the tougher it is, in many cases. It looks like you are doing really well and you know that everything takes time to heal, I have an idea that internal structures can take six months to heal. It also seems like you have a good relationship with your specialist nurse, that's always a good thing. On the subject of feeling a lack of energy, I'm not surprised, you've been through a traumatic ordeal, it will take time to recover physically and mentally.

Please keep us informed of your progress, it's great to hear of a good outcome,

Best wishes
Devonmaid
User
Posted 30 June 2016 09:21:01(UTC)

Hi Andy
Great post from you. I too have just turned 49 , but am exactly 1 yr post op now. Click my Avatar if you want and read my profile. Then again , maybe not , as my outcome hasn't been too good. Please have patience and give yourself a good break both mentally and physically. Your body has been through a very big op however small you may think. Your brain has been through hell. Hopefully you well gain full continence. I did very quickly. As for ED , well not a flicker , but I'm hoping for you. This can be overcome in various ways and please keep posting and ask ANYTHING ! Ensure you chase up ED nurse etc at your 8 week appt. You very hopefully will be given a prescription for a professional pump and rings. Stay strong and keep talking and good luck
Chris




If life gives you lemons , then make lemonade
User
Posted 30 June 2016 09:53:19(UTC)

Hi Andy,

Far from doom and gloom, more realistic and in some parts optimistic.

You have had major surgery, lethargy and tiredness is par for the course, don't fight it, try working within it.

As with so many aspects of the PCa experience, the mind state of "acceptance", where you have come to terms with your new life, your new hopefully temporary limitations, and go with them instead of fighting constantly will probably hep you cope more easily.

Any pump that encourages blood back around the wound and operation may be worth having a go with. If the Osborn ErecAid, is the Rolls Royce among pumps and the and the Tracey Cox EDGE Ultimate Performance Stamina Penis Pump is more off a Trabant, both can get you from A to B warm and dry. The RR may do it in more style, so what? As long as the pump gets blood flowing to your bits, is all that counts. You can exercise and stimulate blood flow without any specialised equipment.

I do not know how long you should resist exercising after surgery to prevent any potential harm? No doubt someone will come along and offer a view on that?

atb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 30 June 2016 10:31:29(UTC)

Hi Andy,

I'm 8 weeks post op. And am getting back to normal though I still take a cushion if I'm a pspassenger on long journeys Each of us is different, I was dry after the catheter and have recently started returning to normal exercise after having just walked the dogs for 6 weeks. On the ED front, just faint glimmerings.
Still waiting results of my post op blood test but already referred to oncologist for discussion as have been upstaged to t3.

Good luck

User
Posted 30 June 2016 10:38:33(UTC)

Hello Andy and welcome from me too.

Most of what I would have said has already been advised but I would just emphasis that your body needs to recover from what it's been through. They didn't just cut your skin, they had a good old rummage around inside so if everything is protesting it is to be expected.
It took me many weeks to recover from major surgery and I was as you describe, everything was too much effort. Even mental effort was too much.

As it all ocurred for you very quickly, it's possible that it's only now that you are able to sit back and assess what has happened to you and the ramifications of it all, so that could be another reason you feel lethargic.

ED is a very personal matter but you will know from your reading on this site that a number of people are likely to respond, including women so I hope you are OK with that. We females tend to see it from the other side (naturally) and what is important to a man (in order of importance that is) isn't necessarily the same for us.

If you had a good, loving, relationship before PC then hopefully you will both make allowances if ED is slow to disappear. There's more than one way to skin a cat as they say.!!

Talking to each other is very very important. Feelings bottled will never get resolved.

At your age I assume your daughters are still young (teenagers?) . You have everything to live for with a young family and thank goodness you moved house eh! Whatever you are feeling now,  without that move you could be a few years further down the line when a straightforward, stand alone op, would not have been an option.

Youth and fitness are on your side. You'll get there. Just give your body and mind time to catch up with everything.

All the best

Sandra

 

We can't control the winds - but we can adjust our sails
User
Posted 30 June 2016 16:58:30(UTC)

Good Lord!!! Back at work already??? No wonder you feel exhausted - you are probably doing too much too soon. Try not going to work - estimates of 10 - 12 weeks off work are normal.

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


User
Posted 01 July 2016 11:34:41(UTC)

Hi Andy, Thanks for your post. I'm in a similar situation, I'm 41 and am due to go in for surgey on the 13th July. It really helps to hear your account, if only to get my recovery expections to be a bit more realistic. I'm far more bothered about the impact of contenance and ED than the surgery itself but I guess I'm just going to have to wait and see how things turn out. It would be great to hear how you're getting on as your recovery progresses.

Andrew.

User
Posted 01 July 2016 11:50:22(UTC)

Hi Andrew,

At 41 you are very young to have been diagnosed...

I'm assuming that you are having the RRP (robotic) surgery?

I was very nervous too though I didn't have many days to get really worked up, I found out on the Wednesday that I was having it on the Saturday...

What I will say is that everyone you will come into contact with (at the hospital) have vast experience with us men and the surgery, they will put your nerves at rest and before you know it you will be back on the ward resting up, yes you will be sore but they will have you out of bed and walking (shuffling) the next day... All being well it's just 1 night in the hospital and then home to your own bed!

The first week you will struggle to do much for yourself so having someone there is important but I was still managing to get myself around the house just to stretch the legs - the weather was ok in that first week so I even mananged to sit outside for a few mintes morning and afternoon!

It is normal to be apprehensive but I assure you it is fine and hopefuly it will mean you are free from this rechid disease!

All the best and keep us updated!

Andy

Thanked 1 time
User
Posted 01 July 2016 11:52:56(UTC)

Hi Lyn,

Yes, maybe a bit too much too soon, I have taken the last couple of days off but will try again on Monday!

The problem these days is that you only get so many weeks at full pay and then it's SSP which isn't a great deal when you have a mortgage, bills and a family! :-)

Anyway, here's hoping after the weekend I am ready to go again!

Thanks for your kind words!

Andy

User
Posted 06 July 2016 08:48:35(UTC)

Nice post and welcome to the group.

I really feel for you, my friend.  I am 68 in September so I have live a great "slice" of my allotted time already and have had some real good times in the sexual department.  I also had "the snip" over 37 years ago, so having kids has been off the agenda for a while and I've only been "firing blanks"!  It must be much more worrying for someone of your age.

The reason why I went to see my GP was because I thought I was just suffering from old age "wrinkly droop"; so I just wanted some Viagra to get the ole' John Thomas to stand to attention again.  Glad I went as I have my MRI scan this Friday and the consultations next Wednesday.

Anyway, take care and keep us posted.

 

Glen

 

User
Posted 18 August 2016 15:15:42(UTC)

Update to my original post...

I had my 8 week post surgery appointment in mid July and was told that my PSA was 2.7 which indicated that although my prostate and 3 lymph nodes were removed, the disease was still somewhere in my body...

I have just completed a 28-day course of oral hormone tablets and had a hormone injection on 29th July, I have since spent 2 weeks in Spain with my wife and daughter.

Yesterday (17th August) I met with a Dr from Clinical Oncology and she confirmed that the cancer had been more agressive than first thought and that it had actually just started to 'poke out' of my prostate.

Over the past couple of months I have had quite a bit of back ache and so I am having an MRI scan on my lower back on 28th August, this is despite the fact that my bone scan back in March showed no signs of the disease but did show some slight degenerative spine 'wear & tear' probably due to the amount of football I played as a younger man! :-)

Assuming that the MRI scan comes back clear, the focus will be on the 'prostate bed' and the remaining lymph nodes, I am due to have my next hormone injection on 18th October and then I will undergo 33 days of radiotherapy. Prior to that I will have a CT scan to determine exactly where I will be 'zapped'

My continence is getting better though I am still wearing 'light' pads, obviously having alcohol exacerbates the condition but that is to be expected...

Re ED, absolutely nothing to report, I have been taking Tadalafil 10mg for about 6 weeks (initially it was 5mg) and so I am now being referred to an ED specialist team which I am really not looking forward to despite the fact that I know it will help...

I'm still positive about life, I am back to work full time now but I am shattered by the time I get home, I just think that I have to 'face up' to whatever is thrown at me, there's no way I'm giving up! :-)

Andy

 

User
Posted 18 August 2016 16:08:36(UTC)

Hi Andy
You are on a very similar journey to me results-wise. Were any of the removed lymph nodes cancerous ? I had 18 removed and 5 were cancerous. So basically I had spread already. A PET scan confirmed they had left nothing behind but they offered RT as a matter of course. After reading up we declined. I've been on HT nearly a year but not the injection kind. Ensure you know all the facts before you chose. We read a letter from my Onco to my doctor and it clearly said I was not on a curative path anymore but the RT may relieve future symptoms. I wish you luck with whatever you choose and please keep in touch




If life gives you lemons , then make lemonade
User
Posted 19 August 2016 12:15:48(UTC)

Following on from my update post yesterday where I explained that I was now on the HT programme, I wondered whether anyone else was having the same treatment (or had it) and was willing to disclose any side-effects that were experienced...?

I have just completed the 28-day course of Bicalulamide 50mg and I had my first hormone injection on 29 July with the 2nd one scheduled for 18 October - so far I have had NO side effects, no hot flushes, no mood swings and no need for a bra! :-)

I'm assuming that the more injections I have the chances of side-effects will increase but I just wondered whether anyone else had 'gotten off lightly' as I seem to be doing?

As I mentioned yesterday, radiotherapy is also on the agenda but I've not even had my CT scan yet so I'm assuming Rt will follow my 2nd hormone injection...

Cheers!

Andy

User
Posted 19 August 2016 12:18:10(UTC)

Hi Chris,

I only had 3 lymph nodes removed but they were all diseased so the assumption is that is where the remaining (microscopic) traces are, however, as I stated yesterday, I am having an MRI scan (on a Sunday of all days) to ensure that my current back pain is not related!

All the best!

Andy

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User
Posted 19 August 2016 16:18:06(UTC)

Hi AJC, I think people will need to know which hormone you are on to be able to contribute anything about side effects. Is it Prostap?

 

It might be that you are just lucky although if you were my brother, partner etc I would be worrying now (catastrophising, of course) that the injection wasn't administered correctly. Has your PSA been tested since the first injection? Has it dropped? Was it done at the hospital or by your local GP practice? 

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


User
Posted 28 March 2017 09:10:51(UTC)

*** UPDATE ***

It's 10 months since I had my prostatectomy and nearly 5 months since my radiotherapy treatment finished (33 sessions) - I am still having the 3 monthly hormone injections (Prostap) which I really don't like, the side effects (hot sweats, zero libido etc) are the worst thing..

I have had 2 acupuncture sessions but couldn't attend the remaining 2 sessions because of work commitments, I'm not sure they did anything positive for me to be honest...

I'm still a bit incontinent but tend to only wear a pad at nighttime, it obviously gets worse if \ when I have a couple of beers!

ED is a major issue, apart from having no desire (thanks to the Prostap), there is absolutely nothing happening... I have had a couple of Andrology appointments and I do have a pump but when my libido is 'ground zero' I have really struggled to even take the pump out of its bag!

My wife is very understanding but I am getting frustrated with myself more than anything...

I'm 50 this week and my wife is taking me away for the weekend, I have another hormone injection next Monday, my PSA test on 7th April and an appointment with the consultant on 02nd May, fingers crossed my PSA will be down from the 2.8 post op!

Andy

User
Posted 28 March 2017 12:35:57(UTC)

Hi Andy
You have had shed-loads of treatment in 10 months. Well done indeed for manning up to it all. I guess it will take quite a while for your body to settle down. Continence should continue to improve. Your nerves have had a right old bashing to be honest from surgery AND radiotherapy. I'm only getting good now at 21 months and that's without RT. I guess the biggest hurdle is HT and lack of libido etc etc. My diagnosis as you know is extremely similar to yours , so please keep in touch. By the end of April I should know exactly what is happening in my body and find a way forward , but I have to say in all honesty I'm planning on QOL rather than drag it all out feeling rough. I'll wait for options.
Keep fighting and best wishes




If life gives you lemons , then make lemonade
Thanked 1 time
User
Posted 16 May 2017 11:13:36(UTC)

** UPDATE **

My PSA is now at 0.015 which is excellent news!

I still have numerous 'side-effect' issues and sometimes I feel really down about them but I then think I have been lucky, the disease was found and through surgery, radiotherapy and hormone treatment I seem to be getting over the worst!

Andy

User
Posted 16 May 2017 12:00:34(UTC)

Hi you seem to have gone through the mill. Hormones certainly make you feel uncomfortable .Found cool technology sheets keep me cool a.all the best

User
Posted 17 May 2017 06:21:43(UTC)

Hi Andy
Thanks for the info. I seem to be on a similar path - RP (Jan 17), then back to work two weeks later. Two months on (after pathology report - one of ten nodes infected) on Bucalutimide 150mg for 2 years and halfway through 33 RT sessions. I'm knackered! It has just occurred to me that since starting work end Jan I've only has two days off, so it's time for a break.

I'm having some vicious side effects though, and if my computer can manage to stay on this site without it locking up again, I'll post a thread on that aspect.

Life, family (including young children), work, treatment, they can all be quite trying at times!

cheers
G

 
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