I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

My head's still spinning!

User
Posted 09 Aug 2019 at 20:40

Went to my GP just over 4 weeks ago as I had fairly bad diahorrea off & on for about 6 weeks- it became mainly mucus, I thought it was some new medication I was taking (Omeprazole) which had this side effect. He assured me it wasn't & proceeded to give me a rectal examination & ordered a blood test along with a referral to the hospital for a Colonoscopy.Next morning, I had a call from the surgery asking me to get another blood test "just to check something". Two days later I got the appointment at hospital for the following day Went to the hospital & the Consultant ordered another blood test & booked my Colonoscopy for Sunday afternoon. Had the procedure & biopsies taken, everything was OK, just that I have diverticulitis.

Monday afternoon, I get a call from the Hospital, offering me an appointment with a Urology consultant on Thursday afternoon, confirmation and details in the post. In the meantime, my GP rang & requested another blood test, this time he explained that my kidney function was a little low & I had a raised PSA level of 8.3 which meant nothing to me - he told me that in my rectal exam he felt my prostate was a bit large & what PSA was about. I didn't get a letter from hospital about my appointment do I phoned on Wednesday & spoke to the Consultant's secretary to be told that it was a "virtual appointment" to get me in the system & could I attend for an MRI the following Wednesday evening. That was last week & I had a prostate MRI + MRI with contrast. This Monday had a call with an appointment for Tuesday afternoon to discuss the results. The outcome is that they have detected "shadows" at the top end of my prostate and need to investigate further. The consultant was great, he went to pains to explain that it could be any number of things, the majority of which are fairly harmless. So I am now booked in for a TRUS on Tuesday afternoon.

Amazing service from both my GP and the Hospital, but it's been a hell of a few weeks & at least my diahorrea seems to have settled down 😁

User
Posted 10 Aug 2019 at 13:38
We too were stunned by the speed of events and treatment following my husband having a raised PSA - he originally had no issues of anything going on. From actually being told it was cancer to the day of surgery was just under one month. The weeks preceding was a flurry of appointments including oncology, physios, bone scan and other things but the whole team really do work brilliantly as a team and we could not have wished for more from them. The NHS can be truly awesome.
User
Posted 30 Aug 2019 at 21:37

Another day, another update - today things are starting to clarify. Saw my GP this morning & updated him on my results & asked him about a referral to Royal Derby hospital - he actually wrote it while I was there!

He asked about the options I had been offered and told me that although the best information would be via the Consultant & nurse specialists, if I wanted to discuss anything to contact the surgery & one of the GP's would respond. He also asked if I would contact King's Mill hospital & make sure the results were sent to him asap.

When I got home I sat with my wife & we had a good frank and open talk about everything ( it was all a bit too raw yesterday) and agreed the next steps we could take ( those under our control) As requested by the Consultant yesterday I phoned the King's Mill cancer support team to let them know I wanted to move to Derby, but got the answering machine. I then called the Prostate Cancer UK nurse specialist line & had a really reassuring conversation with a lady who was happy to spend as much time as I needed to help me get answers to some of the myriad of questions that I have.She also arranged a Toolkit for me & stressed the importance of the questionnaire section in making sure you don't overlook anything when discussing your treatment with the specialist team. I'm afraid I can't remember her name, but I won't forget her help.

Finally, I spoke to the King's Mill nurse specialist & he agreed it made perfect sense to move to a hospital near to home & actually he used to work with one of the Consultants at Derby. He had a copy of my diagnosis - I have a Gleeson of 6 on the left side of my Prostate & 9 on the right or it might be the other way round. He also told me that there was a request for an urgent bone scan appointment & to expect a call on Monday or Tuesday to get me in probably next week. He also arranged the letter to my GP whilst on the phone to me. Again he told me if I needed to talk about anything or neede clarification about anything to call & that after my treatment if I wanted to come back to King's Mill it was not a problem.

All in all I feel a bit more reassured tonight than last night. Now I have the weekend off😀

Many thanks for all the messages & input, it really helps.

Cheers for now. Steve

 

User
Posted 10 Aug 2019 at 00:09
Many thanks for your message, I think I'm just stunned at the speed of the events.

I'd be lying if I said that I wasn't concerned, but overall I would sooner know about these things than not. Overall I am just so impressed with the NHS at this time.

User
Posted 12 Aug 2019 at 21:28
The anticipation is far worse than the actual event. You’ll be fine. Hope it all goes well.

Chris

User
Posted 29 Aug 2019 at 22:41

Good luck.  Yes travel is an aspect.  You’ll need an interview with the surgeon, a pre-op examination and then the operation.  

Did they say where your post operation consultations will be?

I was told it would be at my local hospital but it seemed better to have them at the hospital where the surgeon was even though we live very close to the local hospital.   I also thought the radiotherapy capability was better at the other hospital just in case it was needed at some stage.

We later found we’ve never met the surgeon again after the interview.  He always delegated.

Whether you like the hospital, it’s equipment, if you know who your surgeon is and have looked up his experience are other factors.

I was offered an op at Blackburn some 25 miles and 3 motorways away, like you I worried my wife wouldn’t find it alone in the depths of winter.   I’ve never seen Blackburn Hospital.   Although they had a Robot whereas Preston didn’t at the time.  The surgeon at Preston said he’d see me for an interview within a week and he has good write ups on BAUS with a lot of private work as well.  I was pleased to go there except for the car parking.

The good thing is you could be in hospital less than 48 hours.  Sounds like your wife pushes which is a good characteristic in these circumstances.

Regards Peter

User
Posted 30 Aug 2019 at 07:00

I had my op at Derby Royal and cannot praise them enough. Hope all goes well.

User
Posted 30 Aug 2019 at 09:51
You’ll be well looked after at Royal Derby, had my surgery there 12 weeks ago and couldn’t fault the care I received. Excellent surgeon and very professional follow up nursing care.

Wishing you all the very best.

User
Posted 30 Aug 2019 at 10:24

I have met the consultant who carried out the operation every time I've been back to Derby Royal about the operation and PSA results. I can also recommend the andrologist nursing care I've had concerning ED from the same urology department. I get the impression they "talk to each other" which seems to be an increasingly rare thing.

User
Posted 31 Aug 2019 at 17:37

Many thanks Peter, yes I think the mists are starting to clear - it just feels really odd having a "normal" weekend & not being able to chase anyone for appointments/information.

I spent some time in the garden this morning (it has become rather neglected over the past couple of months) & had a chat with my neighbour. Just normal things and it was good, life goes on & this little irritant doesn't change that.

Hopefully, I will get more clarification over the next couple of weeks and then let the fun begin.

Cheers. Steve

 

User
Posted 31 Aug 2019 at 21:14

Steve

spending time in the garden was about all I could do post op never mind pre op! dead heading and picking out weeds. We had the neatest garden around!!! Seriously though get ready to take it easy after the op Catheter and all, no bending, straining or lifting for a few weeks. Lots of TV, smiling, and loving your family and of course them loving you.

Peter

User
Posted 02 Sep 2019 at 19:47

So this morning I got an appointment next week with a nurse specialist at Kings Mill hospital, followed later in the day with a phone call offering an appointment for my Bone Scan this Friday morning.☺☺At least then I'll know what I'm dealing with.

User
Posted 13 Sep 2019 at 16:24

Did you see our replies on your other thread?

https://community.prostatecanceruk.org/posts/t21679-Slightly-----confused#post223865 

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

User
Posted 29 Sep 2019 at 16:29

Had my neck MRI last Monday afternoon, 'twas a bit of a trip down memory lane for me, it was in a mobile unit ( 1st MRI I had in UK was at King's Mill hospital in the mobile unit- circa 2004) all was fine, other than it was raining when I came out & got wet getting back into the hospital.

Has a call on Thursday from Sue, my Nurse Specialist asking if I had heard anything (thought she would have access to results before me) & to let me know that my transfer to Royal Derby Hospital had been agreed & who my Consultant will be. Now I just need an appointment. So a happy bunny to be nearer home although I can't fault the support I've had at King's Mill, they've been excellent.

Now just need the MRI results & a letter from Royal Derby. Postman watch week.

A quick footnote, I'm hoping to get to the Derby Support Group on Tuesday 8th October if anyone on the forum goes, please let me know.

Cheers. Steve

Edited by member 29 Sep 2019 at 16:35  | Reason: added footnote

User
Posted 01 Oct 2019 at 17:13
Brill
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Oct 2019 at 18:08

Steve,

It looks to me like you'd be a better candidate for RT+HT.

You stand a reasonable chance of retaining sexual function.

Your consultant sounds worried he might not get it all and it could be upgraded, in which case you'll likely require RT+HT anyway, but then you get both sets of side effects.

I would suggest speaking with a radiotherapy oncologist. A popular treatment for your type of case (high risk) is a combination of External Beam RT plus Brachytherapy.

In your bio, you mention DD. What's that?

User
Posted 11 Oct 2019 at 18:44

Hi Steve    It's your choice of course but if my husband was in your position I would rather he opted for the RT/ HT route if possible. My husband opted for the op with non nerve sparing. The PCa turned out to be contained but of course he has total ED now and very slight incontinence (about 97% there) which will be permanent.

Of course at the time we just wanted the best chance of full remission and we didn't really appreciate how much we would miss our normal sex life until some time after the operation.

In your case as the operation alone seems unlikely to put you into long term remission think very carefully about whether you want the side effects from the operation not to mention the pain and recovery time involved only to have to undergo RT/HT anyway with its own set of side effects. Either treatment is not a walk in the park so why put yourself through both. 

As Andy has said I would recommend you discuss with an Oncologist also.

Good luck with whatever route you take.

Ann

Edited by member 11 Oct 2019 at 18:48  | Reason: Not specified

User
Posted 11 Oct 2019 at 19:13

Steve,

Given the DD, you might consider RT with SpaceOAR (stands for Space Organ At Risk), an injectable spacer that pushes the prostate and rectum apart, so the anterior rectal wall doesn't get the full RT dose. Normally, SpaceOAR is not available on the NHS (although they are evaluating it). It is not recommended to high risk patients because of the theoretical risk of pushing micro-mets away from the prostate where they won't get irradiated. However, your DD might sway it in your favour, and it's worth asking if you could have it on the NHS due to the DD. It's around £3000 if done privately. There is a trial at UCLH called ICEMAN, which is using SpaceOAR on high risk patients, the idea being to find out if there's any substance to the theoretical risk of pushing micro-mets away from the prostate and the X-ray beam. Obviously, being a trial, it might not work (in that you might get recurrence due to a surviving micro-met), but that's a risk you would need to weigh up against exposing DD to RT (and I've no idea what the risks of that are). It might be worth contacting UCLH for advice.

User
Posted 11 Oct 2019 at 22:23

S

A lot to consider there and I don't envy your decision making process. If you had attended Nottingham, the MDT oncologist would probably have been recommend  surgery based on all the things that are often described on here as flawed thinking. 

Thanks Chris

 

User
Posted 11 Oct 2019 at 23:25
Andy,

Just as a matter of interest and using the logic of using Space Oar where RT was employed, I took the opportunity of asking UCLH at one of my check up appointments whether it might benefit HIFU treatment. I was told they had tried it with HIFU and it blew right threw it so a no there.

Barry
User
Posted 11 Oct 2019 at 23:49

Barry,

When SpaceOAR is used with HDR Brachytherapy, the needles (or proper name, catheters) have to be put in the prostate before SpaceOAR is installed, because the ultrasound rectal probe can't see through the spacer. I guess if the SpaceOAR absorbs ultrasound, then it would absorb some/all of the HIFU energy, which would explain that.

Come to think of it, I think HIFU also uses ultrasound guidance, so it would probably also have problem seeing through the spacer for targeting.

Edited by member 11 Oct 2019 at 23:51  | Reason: Not specified

Show Most Thanked Posts
User
Posted 09 Aug 2019 at 23:24

Yes, you go to the GP with something and they find something else.  That could be fortunate.  Although a psa test could mean a lot of things, as could a large prostate. A shadow on an MRI is also inconclusive.  So good luck with the biopsy.

PSA 8.3 isn't that high and theoretically at that level there's a bigger chance of it not being Prostate Cancer according to a statistical calculator you can find on line.

I got a phone call asking me to come in an hour later for my biopsy result, although it took nearly 2 weeks to get it. Diagnosis is a worrying time. All the best.

 

User
Posted 10 Aug 2019 at 00:09
Many thanks for your message, I think I'm just stunned at the speed of the events.

I'd be lying if I said that I wasn't concerned, but overall I would sooner know about these things than not. Overall I am just so impressed with the NHS at this time.

User
Posted 10 Aug 2019 at 08:18
Glad to hear ur getting good service from the NHS as I’ve been fortunate to have great service too from both my local team and those in Bristol.

Hope it all works out for the best as whilst 8.3 isn’t particularly high, it may or may not be PCa.

Just for info mine was 1500+ At initial diagnosis (January/17). And I’m still here!!😂

Keep the Faith

J.

User
Posted 10 Aug 2019 at 10:55

I was lucky enough to get my PCa RT in BHOC 

actually August last year, I will always be grateful for the high standard of care and treatment I got there and I think it’s due to that that my PSA is now undetectable and I am able to stop HT at the 18 month point with the approval of my oncologist. It’s strange that sometimes especially coming out of the shower I look at the three little tattoos and remember where I have been

User
Posted 10 Aug 2019 at 13:38
We too were stunned by the speed of events and treatment following my husband having a raised PSA - he originally had no issues of anything going on. From actually being told it was cancer to the day of surgery was just under one month. The weeks preceding was a flurry of appointments including oncology, physios, bone scan and other things but the whole team really do work brilliantly as a team and we could not have wished for more from them. The NHS can be truly awesome.
User
Posted 12 Aug 2019 at 18:46

Quick update, had a copy of a letter from my Consultant to GP this morning. The results of my MRI show PIRADS level 4 lesions at the upper end of Prostate. Still I have tomorrow afternoons TRUS to look forwards to ( it puts a whole new meaning on Click &Collect 😷😷)

Keep you posted.

User
Posted 12 Aug 2019 at 21:28
The anticipation is far worse than the actual event. You’ll be fine. Hope it all goes well.

Chris

User
Posted 14 Aug 2019 at 08:01

My wife persuaded me to go to my GP for a rectal exam because my neighbour was diagnosed with Prostate cancer and I am of an age where I too could have it. I had no symptoms and was healthy. My GP thought that my prostate was a little enlarged but wasn't worried but he suggested I had a PSA test and referred me to our local hospital urology deparment "because they do this all the time and I only do it once a month".  The PSA came back at 4.36. The consultant did another rectal probe and " his prostate felt enlarged but entirely benign". He arranged for me to have an MRI scan which showed an enlarged prostate and a predicted PSA of 9.1 (way higher than the actual reading) but it also showed "an abnormal suspicious area". The consultant suggested that only a biopsy could clarify and so I had a TRUS. All 8 samples showed cancer. Remember I had no symptoms at all. I have since had a RARP in February and fingers crossed all is looking good.

The NHS care I have had has been exemplary throughout what was quite a traumatic journey. I didn't think I had cancer but I'm so glad it was found when it was and treated. It is a lot better to know than to worry. I hope all goes well for you.

User
Posted 29 Aug 2019 at 21:58

OK, got a phone call on Tuesday afternoon offering an appointment today (Thursday afternoon), so off we toddle to King's Mill hospital.

Saw the Consultant who had a little chat & then played his joker. The biopsies on the right side of my Prostate were clear but... unfortunately those from the left side were not so good. I have a Gleeson of 5+4 & the cancer is "extremely aggressive". As I am 67, he can offer 3 choices, a) do nothing & monitor-not recommended! b) high level brachiotherpy/targeted radiotherapy or c) surgery - his preference. Which course did I want as he wanted to start as soon as possible and in the meantime he would arrange a bone scan to see if it had spread.

I think I shocked him by saying I would like to discuss to options with my wife as it affects her as well but I would probably opt for surgery.

His next bombshell was that the treatment would be at Nottingham Hospital (I guess the City hospital but not sure) at which point I asked if it was possible to have it done at the Royal Derby Hospital which is actually nearer to our home & as my wife doesn't drive would be easier for her in respect of Taxis. He didn't se a problem with this other than he would be unable to arrange this as Nottinghamshire hospitals have no direct link to Derbyshire ones & I would need a referral from my GP. ( talk about complicated) but he would gladly make all my notes available.To put it into context our "main" residence is about 35 miles away from both King's Mill & Nottingham hospitals & 6 miles from Royal Derby, we have another property near King's Mill which we use as a base for when I have appointments at King's Mill for ongoing treatment for my neck & back - I have a long term spinal disorder & I could actually get a quicker initial urology appointment than at Derby - it was actually on the same day bas my Pain management appointment.

So, we left King's Mill at 4.30 pm & got back home at about an hour later, as we were driving into the village, Julie suggested we go to the Surgery straight away rather than phoning,so we did. I asked the receptionist if it was possible to speak to a doctor urgently,only to be told there were no appointments available & to attend our local drop in centre, at which point Julie got involved  & we explained that I had just been diagnosed with aggressive PC and needed surgery quickly but would like to change hospital & needed a doctor's referral. She asked us to have a seat for a few minutes & she would try to talk to the duty doctor between appointments. 10 mins later she sat with us & had managed to arrange an appointment for 10 am in the morning. I felt really sorry for her as she looked really upset when she found out why we wanted to speak to the GP.

Anyway, apologies for the rambling, but somehow it feels good to see it in print. Stand by for the next thrilling episode.

Cheers for now. Steve

 

User
Posted 29 Aug 2019 at 22:41

Good luck.  Yes travel is an aspect.  You’ll need an interview with the surgeon, a pre-op examination and then the operation.  

Did they say where your post operation consultations will be?

I was told it would be at my local hospital but it seemed better to have them at the hospital where the surgeon was even though we live very close to the local hospital.   I also thought the radiotherapy capability was better at the other hospital just in case it was needed at some stage.

We later found we’ve never met the surgeon again after the interview.  He always delegated.

Whether you like the hospital, it’s equipment, if you know who your surgeon is and have looked up his experience are other factors.

I was offered an op at Blackburn some 25 miles and 3 motorways away, like you I worried my wife wouldn’t find it alone in the depths of winter.   I’ve never seen Blackburn Hospital.   Although they had a Robot whereas Preston didn’t at the time.  The surgeon at Preston said he’d see me for an interview within a week and he has good write ups on BAUS with a lot of private work as well.  I was pleased to go there except for the car parking.

The good thing is you could be in hospital less than 48 hours.  Sounds like your wife pushes which is a good characteristic in these circumstances.

Regards Peter

User
Posted 30 Aug 2019 at 07:00

I had my op at Derby Royal and cannot praise them enough. Hope all goes well.

User
Posted 30 Aug 2019 at 09:51
You’ll be well looked after at Royal Derby, had my surgery there 12 weeks ago and couldn’t fault the care I received. Excellent surgeon and very professional follow up nursing care.

Wishing you all the very best.

User
Posted 30 Aug 2019 at 10:24

I have met the consultant who carried out the operation every time I've been back to Derby Royal about the operation and PSA results. I can also recommend the andrologist nursing care I've had concerning ED from the same urology department. I get the impression they "talk to each other" which seems to be an increasingly rare thing.

User
Posted 30 Aug 2019 at 21:37

Another day, another update - today things are starting to clarify. Saw my GP this morning & updated him on my results & asked him about a referral to Royal Derby hospital - he actually wrote it while I was there!

He asked about the options I had been offered and told me that although the best information would be via the Consultant & nurse specialists, if I wanted to discuss anything to contact the surgery & one of the GP's would respond. He also asked if I would contact King's Mill hospital & make sure the results were sent to him asap.

When I got home I sat with my wife & we had a good frank and open talk about everything ( it was all a bit too raw yesterday) and agreed the next steps we could take ( those under our control) As requested by the Consultant yesterday I phoned the King's Mill cancer support team to let them know I wanted to move to Derby, but got the answering machine. I then called the Prostate Cancer UK nurse specialist line & had a really reassuring conversation with a lady who was happy to spend as much time as I needed to help me get answers to some of the myriad of questions that I have.She also arranged a Toolkit for me & stressed the importance of the questionnaire section in making sure you don't overlook anything when discussing your treatment with the specialist team. I'm afraid I can't remember her name, but I won't forget her help.

Finally, I spoke to the King's Mill nurse specialist & he agreed it made perfect sense to move to a hospital near to home & actually he used to work with one of the Consultants at Derby. He had a copy of my diagnosis - I have a Gleeson of 6 on the left side of my Prostate & 9 on the right or it might be the other way round. He also told me that there was a request for an urgent bone scan appointment & to expect a call on Monday or Tuesday to get me in probably next week. He also arranged the letter to my GP whilst on the phone to me. Again he told me if I needed to talk about anything or neede clarification about anything to call & that after my treatment if I wanted to come back to King's Mill it was not a problem.

All in all I feel a bit more reassured tonight than last night. Now I have the weekend off😀

Many thanks for all the messages & input, it really helps.

Cheers for now. Steve

 

User
Posted 31 Aug 2019 at 17:18

Hi Steve

I am glad things seem to be clearer for you and that you will be seen at a closer hospital to your home. I had a similar experience to you with results close to yours. I opted for surgery and really glad that I did. My sequence of events was from diagnosis to op in three weeks. I am now 14 weeks post op, completely dry and with only very occasionally a little discomfort. My wife has been a great support in helping me to take things slowly after the op, as I am sure yours will be.

The specialist nurses are brilliant and helped a great deal both before and after the op.

wishing you all the best.

Peter

User
Posted 31 Aug 2019 at 17:37

Many thanks Peter, yes I think the mists are starting to clear - it just feels really odd having a "normal" weekend & not being able to chase anyone for appointments/information.

I spent some time in the garden this morning (it has become rather neglected over the past couple of months) & had a chat with my neighbour. Just normal things and it was good, life goes on & this little irritant doesn't change that.

Hopefully, I will get more clarification over the next couple of weeks and then let the fun begin.

Cheers. Steve

 

User
Posted 31 Aug 2019 at 21:14

Steve

spending time in the garden was about all I could do post op never mind pre op! dead heading and picking out weeds. We had the neatest garden around!!! Seriously though get ready to take it easy after the op Catheter and all, no bending, straining or lifting for a few weeks. Lots of TV, smiling, and loving your family and of course them loving you.

Peter

User
Posted 02 Sep 2019 at 19:47

So this morning I got an appointment next week with a nurse specialist at Kings Mill hospital, followed later in the day with a phone call offering an appointment for my Bone Scan this Friday morning.☺☺At least then I'll know what I'm dealing with.

User
Posted 13 Sep 2019 at 15:57

Saw my Nurse Specialist yesterday, amazing thing is that we knew each other as she was previously with the team I get my epidurals & trigger point injections in my spine(long time degenerative spinal disorder)

Anyway, she had a copy of the initial report on my bone scan & it generally seems to be OK. There is 1 potentially major issue, as from the neck X-rays they think there are lesions on my Cervical spine & have ordered an urgent (their words not mine) MRI, if that's the case I've been told surgery is off the options - on the upside at least I don't have to make that decision.

I'm hoping it is just my crappy neck which about 8 years ago my Ortho Consultant told me was in far worse condition than my lumbar spine, so I think there may well be a degree of calcification developed to cloud the X-rays. Also, is it possible that my PCa has travelled only to my neck? So after that little bombshell, they took my blood for an updated PSA check & they took my p** for whatever they do with it! Keep you posted. Cheers Steve

User
Posted 13 Sep 2019 at 16:24

Did you see our replies on your other thread?

https://community.prostatecanceruk.org/posts/t21679-Slightly-----confused#post223865 

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

User
Posted 13 Sep 2019 at 16:41

Hi Lyn, many thanks for your message, no I hadn't seen replies to my other thread - like an idiot, I neglected to check the notification box (in my defence, for whatever reason, it wouldn't register when using my tablet) so I was blissfully unaware.. I also assumed that it would be under my username ( god. I'm rubbish at these new fangled things, although I can programmena VHS recorder really well)

Should be having MRI later next week & hopefully that will give me answers, although it is reassuring that other tests are available.

User
Posted 13 Sep 2019 at 17:34

Originally Posted by: Online Community Member
..... although I can programme a VHS recorder really well

 

😂

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

User
Posted 29 Sep 2019 at 16:29

Had my neck MRI last Monday afternoon, 'twas a bit of a trip down memory lane for me, it was in a mobile unit ( 1st MRI I had in UK was at King's Mill hospital in the mobile unit- circa 2004) all was fine, other than it was raining when I came out & got wet getting back into the hospital.

Has a call on Thursday from Sue, my Nurse Specialist asking if I had heard anything (thought she would have access to results before me) & to let me know that my transfer to Royal Derby Hospital had been agreed & who my Consultant will be. Now I just need an appointment. So a happy bunny to be nearer home although I can't fault the support I've had at King's Mill, they've been excellent.

Now just need the MRI results & a letter from Royal Derby. Postman watch week.

A quick footnote, I'm hoping to get to the Derby Support Group on Tuesday 8th October if anyone on the forum goes, please let me know.

Cheers. Steve

Edited by member 29 Sep 2019 at 16:35  | Reason: added footnote

User
Posted 01 Oct 2019 at 15:21

Good news day!!

Phone call from Nurse Specialist this morning, my neck MRI shows no sign of Cancer🎉🎉 it's just knackered, no spinal compression,no suspicious bulges. But (good old but!) I have a lesion on my Thyroid which they don't want to treat at the moment & I also have a cyst on my Epiglottis which they do want to investigate,so I'm getting a quick referral to the ENT Specialist. But no more cancer found!!

I've just been reading the article posted by Old Barry about HIFU it seems to be a superb option, hope it's available at Royal Derby Hospital & that I'm a suitable candidate. Just a bit concerned about the perineural intrusion on the right side of my Prostate.

Anyway, today's a very good day!!

Cheers. Steve

User
Posted 01 Oct 2019 at 17:13
Brill
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Oct 2019 at 17:23

Well, I wasn't quite expecting that!

Met my Urology Consultant at Royal Derby yesterday, he actually went through my results & had a discussion with me. It seems my case is unusual in that I have a very aggressive cancer with a low PSA (currently 8.9), he showed me my MRI & explained the conclusions.

The majority of my cancer is towards the bottom of the Prostate & there is no possibility of nerve sparing, also, it appears to be at the edge of the seminal vesicles. He is happy to carry out a Robotic prostatectomy but his opinion is that the Gleason 4+5 may well be upgraded & they may well not "get it all" with me requiring further treatment down the line.

In respect of HIFU and Brachiatherapy, it is felt that neither of these options are suitable. So my choices are Surgery or HT+RT, which was a bit of a shock. As of yesterday, I am awaiting a date for Surgery, which provisionally will be either 22nd or 29th of October!!  Had rather be sleepless night during which I changed my mind half a dozen times (a situation I'm sure many on this site are familiar with.

Cheers for now. Steve

 

User
Posted 11 Oct 2019 at 18:08

Steve,

It looks to me like you'd be a better candidate for RT+HT.

You stand a reasonable chance of retaining sexual function.

Your consultant sounds worried he might not get it all and it could be upgraded, in which case you'll likely require RT+HT anyway, but then you get both sets of side effects.

I would suggest speaking with a radiotherapy oncologist. A popular treatment for your type of case (high risk) is a combination of External Beam RT plus Brachytherapy.

In your bio, you mention DD. What's that?

User
Posted 11 Oct 2019 at 18:35

Hi Andy,  Diverticulosis or Diverticular Disease, basically I toggle between diahorrea (mainly mucus or slime) and normal to constipation. From what I've read, Radiotherapy can potentially weaken the colon wall, although there may be others on the site with greater knowledge and understanding.

Certainly at 3am I was thinking why not just go for RT!!

Cheers. Steve

 

User
Posted 11 Oct 2019 at 18:44

Hi Steve    It's your choice of course but if my husband was in your position I would rather he opted for the RT/ HT route if possible. My husband opted for the op with non nerve sparing. The PCa turned out to be contained but of course he has total ED now and very slight incontinence (about 97% there) which will be permanent.

Of course at the time we just wanted the best chance of full remission and we didn't really appreciate how much we would miss our normal sex life until some time after the operation.

In your case as the operation alone seems unlikely to put you into long term remission think very carefully about whether you want the side effects from the operation not to mention the pain and recovery time involved only to have to undergo RT/HT anyway with its own set of side effects. Either treatment is not a walk in the park so why put yourself through both. 

As Andy has said I would recommend you discuss with an Oncologist also.

Good luck with whatever route you take.

Ann

Edited by member 11 Oct 2019 at 18:48  | Reason: Not specified

User
Posted 11 Oct 2019 at 19:05

Many thanks for your reply, I fully understand what you're saying, I think that it's easy to get carried whilst in the consultation along with, you can have surgery & follow it up with RT but not usually the other way around. I've sort of convinced myself that the ED isn't really an issue (I'll be 68 at Christmas & am currently on so many meds for other issues that I suffer with it now)

I'll be doing a lot of thinking over the weekend along with talking to my poor beleaguered wife! and anticipate a slightly arkward phone call on Monday.

Cheers. Steve

User
Posted 11 Oct 2019 at 19:13

Steve,

Given the DD, you might consider RT with SpaceOAR (stands for Space Organ At Risk), an injectable spacer that pushes the prostate and rectum apart, so the anterior rectal wall doesn't get the full RT dose. Normally, SpaceOAR is not available on the NHS (although they are evaluating it). It is not recommended to high risk patients because of the theoretical risk of pushing micro-mets away from the prostate where they won't get irradiated. However, your DD might sway it in your favour, and it's worth asking if you could have it on the NHS due to the DD. It's around £3000 if done privately. There is a trial at UCLH called ICEMAN, which is using SpaceOAR on high risk patients, the idea being to find out if there's any substance to the theoretical risk of pushing micro-mets away from the prostate and the X-ray beam. Obviously, being a trial, it might not work (in that you might get recurrence due to a surviving micro-met), but that's a risk you would need to weigh up against exposing DD to RT (and I've no idea what the risks of that are). It might be worth contacting UCLH for advice.

User
Posted 11 Oct 2019 at 19:37

Hi, I seem to remember having read something about this, well worth a bit more research. I'd actually convinced myself surgery wouldn't be an option because of the PNI so I think I was more easily swayed when it was offered.I was looking at Brachiatherapy before seeing the Urology Consultant.

More pondering... Cheers Steve

 

User
Posted 11 Oct 2019 at 22:23

S

A lot to consider there and I don't envy your decision making process. If you had attended Nottingham, the MDT oncologist would probably have been recommend  surgery based on all the things that are often described on here as flawed thinking. 

Thanks Chris

 

User
Posted 11 Oct 2019 at 23:25
Andy,

Just as a matter of interest and using the logic of using Space Oar where RT was employed, I took the opportunity of asking UCLH at one of my check up appointments whether it might benefit HIFU treatment. I was told they had tried it with HIFU and it blew right threw it so a no there.

Barry
User
Posted 11 Oct 2019 at 23:49

Barry,

When SpaceOAR is used with HDR Brachytherapy, the needles (or proper name, catheters) have to be put in the prostate before SpaceOAR is installed, because the ultrasound rectal probe can't see through the spacer. I guess if the SpaceOAR absorbs ultrasound, then it would absorb some/all of the HIFU energy, which would explain that.

Come to think of it, I think HIFU also uses ultrasound guidance, so it would probably also have problem seeing through the spacer for targeting.

Edited by member 11 Oct 2019 at 23:51  | Reason: Not specified

User
Posted 12 Oct 2019 at 12:28

Hi Chris, yes, a lot of pondering going on, I think a call to the Nurses on here on Monday morning, they tend to deal in realities & give candid advice. I haven't even mentioned it to Julie although I think she's aware I'm conflicted.In the meantime, a bit more reading I think.

Cheers. Steve

User
Posted 16 Oct 2019 at 19:09

Hi, next & probably the biggest step in my saga...

I have my date for surgery (yes, after a lot of pacing & a call to one of the fabulous nurses on this site,  I'm going for the op) The date is 29th October!! I'm going in Monday afternoon, so hope it's the morning slot for the operation. Tomorrow it's shopping (yippee) for waterproof mattress covers & rubber rings😁😁.

Went to hospital yesterday & had the cyst on my epiglottis checked out, all is fine and I was discharged. If you don't like the TRUS procedure, you really need to try the camera up your nose & down to the back of your throat - not pleasant at all! Although I think it was worth the discomfort to find its all ok. According to the doctor I saw, they needed it doing to make sure I can be intubated for the surgery, it's astounding the things that required.

Anyway, I await the day.Keep you posted. 

Steve

User
Posted 16 Oct 2019 at 19:26
Not sure that you will need a rubber ring, your belly will hurt most. Dunelm do a waterproof sheet that doesn’t feel like rubber; alternatively, you could buy some disposable puppy training pads from any good pet shop. Other shopping list suggestions:-

- a bucket to stand the night bag in

- underpants (not boxer shorts) in a size larger than you usually wear

- tracksuit bottoms in a soft material and dark colour; ideally with a drawstring waist rather than elasticated (M&S did sell some in sweatshirt material - not sure if they still do?)

- clarify whether the hospital will provide local anaesthetic such as instagell for the eye of your penis; if not, buy a tube

- a few (not hundreds yet) incontinence pads such as Tena for men or Boots own brand for men (also check whether they are provided on the NHS in your Trust

- books / puzzles

Assuming you are still having non nerve sparing, ask now about whether there is an ED service or andrology clinic in your area and whether it is the surgeon or GP that will need to refer you. The earlier the referral is in, the quicker you are likely to start on penile rehabilitation afterwards. Also, between now and the 29th October, you may as well start doing your pelvic floor exercises to get the technique right.

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

 
Forum Jump  
©2019 Prostate Cancer UK