Very worried about referral for high PSA

User

Posted 24 May 2018 at 17:15

Well, this is a bit of a bummer.

Firstly, you won't be surprised to hear that I do have prostate cancer. Could be worse: Gleason 3+3, 8% of positive cores on one side, 16% on the other. Not too stressed about that - I suppose if you have to have PC, that's probably about as good as it gets. Probably be offered either RP or RT for that.

Secondly, the CT scan has showed a 4.5cm tumour on one of my kidneys, which is almost undoubtedly malignant. This appears to be entirely unrelated to the PC - it's just been caught purely by chance by the CT scan. A good thing too, because it appears (fingers crossed) to be entirely contained within the kidney, so hopefully removing the kidney will sort it out. Had it been left undetected for another few years it would have been lights out. One can manage perfectly well with one kidney, which is in fact what my urologist reckoned my body is pretty much doing at the moment.

Finally, the scan seems to show that one of the major blood vessels to my spleen is on the verge of rupturing, so I need to see a vascular surgeon about that.

So, next will be a referral to the MDT at the nearest major oncology centre, who will take care of the PC and the kidney, with a separate referral for the vascular thing.

All in all, not entirely the news I was hoping for, and I'm feeling a tad down about it.

Oh well,

Chris

Edited by member 24 May 2018 at 17:48 | Reason: Not specified

User

Posted 24 May 2018 at 18:02

Looks like you scored a hat-trick!

Sorry to hear your news and I wish you the best for the future.

Kind regards,

John.

User

Posted 24 May 2018 at 18:20

I’m no doctor Chris, but they also found a 2.5 cm tumour on one of my kidneys ( well actually the adrenal gland ) during a routine CT. This is more common than you think and they call it an incidental-oma. I had a lot of tests but they eventually decided it was benign and no problem at all. Having said that , the adrenal gland does produce psa , and my post op psa is now greater than 24 so I’m a tad suspicious.

If life gives you lemons , then make lemonade

User

Posted 24 May 2018 at 18:33

Sorry to hear your news Chris but on the positive side your three problems look to be solvable. I wish you well with your future treatments. I am sure with a little bit of luck you can come out of this well.

Best Regards

Ann X

User

Posted 25 May 2018 at 09:05

Feeling pretty desperate this morning, I must admit. Is it worth going on? I feel physically fine now, but all that seems to lie ahead is a whole series of operations and long and painful “recovery” if that’s the word. It all seems utterly bleak. I’ve completely blanked on what the urologist said to me after he gave me the results. Think I probably need to phone his secretary and see if she can tell me what’s going to happen.

Scared shitless. Total despair. Nobody to talk to.

Chris

User

Posted 25 May 2018 at 10:34

Chris, from what you have described your condition is definitely treatable. I felt a bit like you after my diagnosis. I am on 3 years hormone therapy with the side effects of erectile disfunction, hot flushes, loss of libido (no interest in sex). Now some people might say at 66 the latter might not be an issue, but I can tell you it is for me!

Also I will need 8 weeks radiotherapy Monday to Friday, this is going to be really hard and I’m trying to put together a team of drivers to help me get through it. But I have never once thought about giving up And neither should you my friend.

My oncologist talks about me being curable and I’m Gleason 4:5! If you feel that low please call one of the nurses on this website. I have spoken to 2 and they are vastly experienced in all aspects of PCa and helped me enormousl. Call now! Please

alan

Edited by member 25 May 2018 at 10:35 | Reason: Not specified

User

Posted 25 May 2018 at 18:02

Sorry - feeling really embarrassed about that last post now. My emotions at the moment seem to be running wild - one minute I'm feeling absolutely fine and five minutes later I'm in darkest despair and everything seems hopeless. Still in shock, I guess. Hopefully I'll come to terms with it soon.

I should be grateful for the PC - it may well have saved my life. My urologist said that if the kidney tumour had been left another few years it would have spread, and stage 4 kidney cancer only has 5-year survival rate of 8%. It's pure luck that the prostate MRI happened to catch one portion of it and I had a sharp-eyed radiographer.

Chris

User

Posted 25 May 2018 at 20:32

HI Chris,

I'm sorry to hear about your results but as others on here have said all very treatable. Please don't despair we on here will always do our best to help you in any way we can and as Pallance suggested the nurses on here are very good at what they do, also you could talk to the Macmillan people they are also very good. Your not alone Chris so try to stay positive, I know it's hard but trust me staying positive really does help.

I wish you all the best for the future and hope that you get the treatment you need.

God bless

Ants

User

Posted 25 May 2018 at 20:58

You have absolutely nothing to apologise for or feel embarrassed about. I think you are quite right that there will be some shock involved - in most cases, men are a little prepared for the possibility of being told they have prostate cancer because they have understood that their biopsy & scans are because there is a problem - or because they have become symptomatic; in my dad's case it was an out-of-the-blue trip to A&E for urinary retention that led to him being diagnosed so even though he wasn't put through the waiting game he still understood that prostate cancer was a possibility which they were investigating while he laid on the trolley.

In your case, there was nothing to prepare you for anything more than a PCa diagnosis and although it is human nature for people to imagine a worst case scenario and then rehearse how they will react, what will be said, etc etc that was all taken away from you by the actual result being so unexpected.

Hopeful that you will soon have a plan in place and can get on with dealing with it all. My assumption is that they will want to deal with the vascular issue first?

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

User

Posted 26 May 2018 at 08:58

Hi Lyn,

As I understand it, the two cancers are being referred to the local MDT, and there’ll be a separate referral to a vascular surgeon for the blood vessel issue. Of the cancers, the kidney cancer is by far the more serious and will be dealt with first - with a Gleason 3+3 and only a small percentage of positive cores I suspect the PC has no real urgency.

Trying my best to stay positive about this, because everything I’ve been diagnosed with seems eminently treatable, but the sooner I actually start some treatment the better, as far as I’m concerned. At the moment I can’t talk to anyone about this (or even write about it) without breaking down in tears, which is horribly embarrassing.

Went to see my GP yesterday and she’s signed me off work for four weeks. My employers are being great about this, and I can have up to a year off on full pay, which removes any financial worry. I’m hopeful that in a few months I’ll be able to put all this behind me and get on with my life (I don’t think there’s any rush to do anything immediately about the PC), but at the moment I’m just trying to get through this one day at a time and not think too much about the future.

It’s a tough time, and I’m finding the emotional side of it hard to handle. I’ve always been someone who keeps things bottled up (I was brought up very much in the “always keep a stiff upper lip” tradition), but I’m failing miserably to do that in this instance.

Chris

User

Posted 26 May 2018 at 16:59

Feeling a lot better today from the emotional side of things. Today's the first day since my diagnosis that I've been able to think about what's ahead of me calmly without getting all weepy about it, which I guess is a good thing.

I've been reading about robot-assisted kidney removal (which is what I'll probably be having) and it doesn't sound too bad at all. Probably 2-3 days in hospital and another two weeks of "no heavy lifting". Far shorter recovery time than open surgery. Really keen now to get it out of the way! I'm hoping to get some sort of referral in the next week.

I'm due to go on a week's walking holiday next Friday. When I got my diagnosis I immediately thought "There's no way I'll be going on holiday after this news!" but now I'm quite keen to go. A last week of enjoyment before the unpleasant stuff starts. Seeing my urologist again on Thursday so I'll ask him if there's any reason I shouldn't go.

Actually feeling quite cheerful today, which is a real surprise. Hope it lasts - fed up with the drastic mood swings I've been going through for the last few days.

Don't really know why I'm telling anyone this stuff - I'm sure it's not of the slightest interest to anyone! - but I'm finding it quite therapeutic to get it off my chest, so I hope you'll forgive me rambling on.

Chris

User

Posted 26 May 2018 at 17:34

Never think we are not interested Chris. You need to get it into your head that all of us are here for you mate. Some have been there and are at the end of their PCa journey, some are just starting like you, some are into the phases of curative therapy like me.

User

Posted 26 May 2018 at 17:38

Cheers, Alan. You're right - I do need to keep reminding myself that I'm not alone on this journey.

Chris

User

Posted 26 May 2018 at 23:45

That’s great Chris, we are on the same wavelength! Whatever is on your mind, keep posting it here, however you feel or whatever is changing, we want to hear what is happening to you and how are you are coping and getting on with it, in that way we can give you help and support through this forum that’s what it is here for. Never ever for one moment think you are alone. When you feel down get on here and we can chat. If you feel you can’t cope need someone to talk to I can always give you my phone number, i’m early in my journey to beat PCa and I know exactly what you’re going through as I had five scans and my biopsy results, giving me 6 agonising results to wait for. Don’t suffer alone please

User

Posted 27 May 2018 at 00:20

Best check with the vascular specialist about the walking holiday - I think that may be more of an issue than the cancer? And check with your travel insurance as well.

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

User

Posted 27 May 2018 at 08:31

Just a local holiday, Lyn, so no insurance involved. I'm seeing the urologist again on Thursday so I'll ask his advice.

I'm completely in the dark about what will actually happen next. I guess I'll get a letter giving me an appointment with someone? Hope it happens soon - I'm finding it tough living with the knowledge that there are tumours growing inside me. Want to get on with treatment.

Back on the emotional rollercoaster again since last night. This is horrible. I know lots of people live with cancer and I've got to learn to do it myself, but at the moment I'm feeling completely isolated and desperately frightened. I'm hoping I'll feel better when I find out what's going to happen, because I just can't carry on like this.

Alan, I'd like to take you up on your kind offer. I'll send you a message.

Chris

User

Posted 27 May 2018 at 09:28

OK Chris, I’ve sent you a PM. I have been through the complete diagnosis and constant waiting for results rollercoaster 5 times. I can relate the journey I have done so far. I am not a professional advisor by any means and there are nurses available on here who helped me twice when I was in a dark place. They are vastly experienced. I would urge you please to call them as well, you won’t regret it, I found them invaluabl.

Alan

User

Posted 27 May 2018 at 10:12

I've spoken to the nurses a couple of times, Alan, and you're right - they are very helpful. Just feeling really down in the dumps at the moment and it would be nice to have a chat to someone who's "been there".

Lyn, I do hope that the urologist doesn't recommend against physical exertion because of the blood vessel abnormality that showed up on the scan. Working up a good sweat is the best way for me to take my mind off cancer at the moment . As I say, I'll ask his advice and (obviously) follow it. I've been trying to improve my fitness and lose weight since the start of the year (lost nearly 3 stone since January) and I've read that being a healthy weight and eating sensibly is an important part of fighting cancer. I don't want to put all that weight back on again by stopping exercising, if at all possible.

Chris

Edited by member 27 May 2018 at 10:38 | Reason: Not specified

User

Posted 27 May 2018 at 20:00

On my GP's advice, I've started taking Diazepam (Valium) which I was prescribed a while ago because I've always suffered from occasional anxiety attacks, and it's really helping control the emotional stuff. I don't particularly like taking it because it makes me feel as though I'm thinking in slow motion, but after taking it for 24h I'm feeling a lot better and more in control of my emotions again. I'll stay on it for a few more days and hopefully by then I'll have come to terms with things and will be able to cope without it.

I've made another appointment with my urologist for Thursday (I'm private, so I can make appointments rather than needing the hospital to do so) because when I saw him last Thursday for the results he opened the conversation with "I've got some very bad news for you", which kind of made me switch off and miss 90% of what he subsequently said. (I'm sure he's an excellent urological surgeon, but his bedside manner needs some work!) This time I'm going prepared with a written list of questions so I can find out properly exactly what the tests showed and what's going to happen next.

User

Posted 31 May 2018 at 18:40

Slightly more worried today. Saw the urologist again and he's concerned that the relatively benign TRUS biopsy report of Gleason 3+3 and only 6% positive cores on one side and 12% on the other isn't really consistent with a PSA of 31, so he's recommending a template biopsy to see if more active cancer is lurking unseen. That's really not what I wanted to hear. Wouldn't cancer that was out of reach of the TRUS have shown up on the mpMRI, though?

My case goes to MDT either tomorrow or next Friday, and I've got an appointment with the consultant oncologist (who will tell me the MDT's recommendations) on Monday 11th June.

Trying to stay positive, but it's not easy when every meeting seems to bring yet more bad news.

Edited by member 31 May 2018 at 18:48 | Reason: Not specified

User

Posted 31 May 2018 at 19:08

Hi Chris,

I was like you in that after each appointment my diagnoses seemed to worsen, one visit I'm going home happy the next the wind gets knocked out of my sails.

I would not be overly worried about the template biopsy as it may also show a Gleeson 3+3 and no further cancer, not sure why your urologist is suggesting the Gleeson isn't consistant with the PSA as people with high PSA readings don't always have cancer and some with low readings do. Not sure whether the mpMRI shows deep enough in to the prostate to give an accurate assessment, that's probably why they still need us to have biopsies, perhaps your urologist is just being over cautious in requesting the template biopsy. Perhaps your oncologist will be better placed to answer some of the questions you have raised as they are far more experienced about cancer, in my opinion, then a urologist.

I know it's hard to stay positive but that is all you can do at the moment try not to dwell on the negative and stay strong.

Wishing all the best

Ants

User

Posted 31 May 2018 at 19:25

Just to clarify, Ants, my urologist hasn't actually sent me for a template biopsy; he just suggested that it's something that the MDT might recommend to try to find the reason why my PSA is significantly higher than one might expect for localised PCa. As you rightly say, he isn't a cancer expert, so I'll wait to hear what the oncologist has to say a week on Monday.

I'm going on holiday tomorrow for a week and I'm going to do my damndest to put all thoughts of cancer out of my mind and just relax and enjoy myself. Not sure I'll succeed in the goal, but I'll try!

One piece of mildly good news today: I mentioned that one of the "incidentals" shown up by the CT scan was an aneurysm (a widening of the blood vessel) in the artery leading to my spleen. I saw the vascular surgeon this morning and he said that this is an extremely common condition which, in the vast majority of cases, is entirely benign. He's going to review the scan images himself, but said it's very unlikely to require any action, and even if it does it's a routine procedure and nothing to worry about.

Chris

User

Posted 01 Jun 2018 at 14:16

Have a great holiday Chris. Hope you get plenty of rest and relaxation.

The aneurysm that you mentioned my mother in law had the same thing and has been living with hers for the best part of twenty years your vascular surgeon sounds like a good person.

Have a good time

Ants

User

Posted 02 Jun 2018 at 00:11

Chris, so pleased to hear the aneurysm isn't a serious thing - I was really worried for you!

I am not an oncogist but fairly sure I have read that kidney problems can raise PSA levels and as pointed out already, there are plenty of men with PSA higher than yours and no apparent cancer so I hope your urologist is just worrying unnecessarily. Have a good holiday and deal with the tihs later.

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

User

Posted 04 Jun 2018 at 23:27

Hi I am pretty in the same position, but I woke up one day and thought I am 51 and Black and those are 2 factors I have thought about, I am having a biopsy soon and i'm scared my family are too, I don't really have any of the signs but with a Biopsy I'm so afraid that I will get bad news! help me please!

Edited by member 04 Jun 2018 at 23:28 | Reason: Not specified

User

Posted 05 Jun 2018 at 09:45

What was your PSA reading Ricky? It’s tricky unless we know. You should not beat yourself up until you get your biopsy results. It is a cruel fact that black people are more susceptible to,prostate cancer and you are very young to be hit with this. Please post your PSA At diagnosis and the result of your DRE (digital rectal examination) that you must have had from your consultant? Keep on this forum, or it might be better if you started your own new topic. There doesn’t seem to have been many black people on here (or members have preferred not to say) This is a long post and your access to help might get swallowed up.

User

Posted 08 Jun 2018 at 15:35

Things are moving on.

My case has been to MDT now, and I had a long (nearly an hour!) meeting with the MDT urologist (privately) last night. He's the one who's going to sort out my kidney tumour, and he gave me a very detailed look at (and explanation of) the pictures from the CT scan. He is very confident that he'll be able to remove just the tumour and leave me with at least half of my kidney, which is far better news than I was expecting, so I'm happy about that!

On Monday evening I'm seeing the oncologist to talk about the prostate cancer. The news is apparently good: Gleason 3+3 with 8% of cancerous cores on one side, and 16% on the other, with the mpMRI showing no sign of cancer spreading to the lymph nodes or bones, so all those factors put me very much in the "low risk" category, but the "elephant in the room" is the PSA of 31, which is inconsistent with the findings. The concern appears to be that there might be more active cancer in the front of the prostate which the TRUS can't sample, so the urologist suggested that they're likely to recommend doing a template biopsy to see if the TRUS missed something more active. He reckons that they're unlikely to simply put me on AS with a PSA as high as mine is.

I mentioned that the CT also showed an aneurysm in the splenic artery (the artery leading to the spleen). Although the vascular consultant said that the vast majority of these are benign, he's asked for a more detailed CT scan of the artery in order to have a closer look. The concern is that the splenic artery runs very close to the left kidney (where they'll operate), and when the clamp off the blood supply to the kidney during the operation that will increase the blood pressure in the splenic artery, so they don't want it to burst when they do that! So I should have that additional CT scan early next week, and a follow-up with the vascular surgeon to hear his opinion on the findings on Thursday.

So things are happening, but probably a few tests and scans still to do before I actually start treatment.

Feeling happier about things now, though. Everything is being investigated, and it all looks "fixable".

Cheers,

Chris

User

Posted 08 Jun 2018 at 15:51

Hi Chris,

Hope you had a nice break, glad your feeling more positive about your situation and things are moving in the right direction for you, hopefully you can start your treatment very soon.

Keep us posted and wishing you all the very best

Ants

User

Posted 08 Jun 2018 at 16:07

Hi Chris, glad you’ve got some good news on your journey. The reason that I had the template biopsy was because TRUS can easily miss areas of the prostate And my consultant wanted to be sure, I’m so glad he did. The one thing I knew after my template biopsy was exactly what cancer I had without any doubt. It was an easy day case procedure for me, in at 8 AM I’m out at 2 PM general anaesthetic no pain after-care was minimal.

Once you have had that, you will know exactly where you are.

Good luck keep in touch

Alan

User

Posted 09 Jun 2018 at 08:55

Thanks, Ants and Alan. I very much enjoyed the break, thanks, although I needed to come back a day early for the consultation on Thursday. I didn't entirely succeed in putting cancer out of my mind, but I certainly felt less stressed than I have done since I was diagnosed!

I'm keen to get on with treatment now. Hopefully not too much longer to wait before that happens. I've never been in hospital before as an in-patient, so I'm a little stressed about the kidney operation, but I'm trying to keep positive about it and just think about it as something I need to go through to be able to enjoy the rest of my life. Although I'm a private patient, the operation will be done at an NHS hospital, because that's where the robot is. I'm told, though, that I should only be in hospital for about 2 days.

Chris

User

Posted 11 Jun 2018 at 21:00

Busy day today.

Firstly, this lunchtime I had a more detailed CT scan of the splenic artery, where the aneurysm is, to see if it'll need anything doing before they can go ahead with the kidney surgery. The last CT scan I had, for the kidney, I was fine with, but apparently when they scan a blood vessel they need to pump in a much more intense dose of the iodine "marker" that goes in through a cannula in the arm, and that's had me throwing up all afternoon. Not nice at all. Seeing the vascular surgeon on Thursday morning to get the results.

This evening (still feeling somewhat queasy!) I've seen the oncologist who attended the regional MDT. He said basically what I was expecting, which is that the Gleason 3+3 from the TRUS isn't consistent with a PSA of 31, so they want to do a template biopsy to see if more active cancer is lurking around the front of the prostate. He's referring me to yet another consultant (number five!) for that, and it'll probably be done next week. That'll be under general anaesthetic (thank God!).

One thing he did say is that with a PSA of 30+ they're very unlikely to offer surgery, because that level of PSA probably means active cancer cells that could be missed by the surgery, so the offered treatment will most likely be HT followed by RT.

So things move on, but unfortunately no treatment plan as yet.

Cheers,

Chris

User

Posted 11 Jun 2018 at 21:29

Exactly what they said to me Chris, PSA of 38, luckily my consultant sent me directly for template biopsy so I avoided the dreaded TRUS

Don’t worry at all about the template biopsy it’s a doddle. If it’s anything like my hospital they were fantastic soon as I came out of the operation they topped me up regularly with tea and water, all helps as you need to pee a jug before you can go home

i had no blood in my pee, but pink semen for a couple of weeks, which wife thought was funny, bless her

despite 32 biopsies I had no issues, kept dressing on for a day, checked it out with a mirror and took a selfie!

no after pain or bleeding at all and no walking like John Wayne

good luck with the next step. Will be interesting to see the difference in the Gleason score between the TRUS biopsy and the template biopsy

User

Posted 11 Jun 2018 at 21:42

Thanks, Alan. I was going to ask if you'd been told something similar regarding surgery, because our cases seem to be pretty similar.

Not too concerned about the template biopsy. Peed blood for a week and a half after the TRUS, so hoping this time I'll avoid that!

Cheers,

Chris

User

Posted 11 Jun 2018 at 21:44

Yes, I meant to mention that Chris as I had a PSA at 38 which proved to be Gleason 4:5 surgery is not offered for such aggressive PCa

User

Posted 11 Jun 2018 at 21:47

I had the iodine marker on two MRI scans as I had suspect areas that were not clear. I had no adverse reactions I think you were just unlucky

I think the strangest thing was going for the bone scan and following the signs for nuclear medicine and going down in a lift as it was in the basement

Then watching the technician get the injection out of a shielded metal box nearly freaked me out

Edited by member 11 Jun 2018 at 21:48 | Reason: Not specified

User

Posted 11 Jun 2018 at 22:10

Originally Posted by: Online Community Member

Yes, I meant to mention that Chris as I had a PSA at 38 which proved to be Gleason 4:5 surgery is not offered for such aggressive PCa

It isn't necessarily the G 4+ 5 that rules out surgery, lots of men do have the op with that score. It is more about how many cores were positive, what % of the cores was positive, the T score, etc. Al things combined, the MDT decided that RT / HT was best in your case but another man with G9 may get a surgeon with a different view.

Chris, I am a little surprised that they are suspicious of your results as we have plenty of men who have had higher PSA and no sign of cancer, or it has been put down to BPH. Fingers crossed for you that the template biopsy results are good and your G3+3 was reliable.

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

User

Posted 13 Jun 2018 at 09:45

They move quickly, anyway. Just got a phone call from the hospital to arrange an appointment for Saturday morning with the chap who’ll be doing the template biopsy. He will be the 5th different consultant I’ll have seen in the last month! This isn’t an appointment for the procedure itself, just for a consultation. I’m hoping the procedure will follow soon after that. I believe that since this will be done under a general anaesthetic there’ll be a “pre-op” examination (ECG, etc).

Starting to worry a bit about tomorrow’s appointment to get the results of the aneurysm scan, in case they say that it’ll make the kidney surgery too risky. The vascular surgeon did say that there was a very small chance they’d need to remove my spleen and tie off the splenic artery, but that would only be done if it were a case of saving my life, but I need the kidney surgery to save my life. Eek! Must try not to over-analyse these things, but still worrying about it. Oh well, I’ll know tomorrow. I really want to get the kidney surgery over with so at least the renal cancer is sorted out.

Chris

Edited by member 13 Jun 2018 at 09:53 | Reason: Not specified

User

Posted 13 Jun 2018 at 10:03

Originally Posted by: Online Community Member

Chris

chris, I think I told you that template biopsy is transperineal that means it’s between your anus and your testicles and they go straight through the body into the prostate in my case 32 times you need a general anaesthetic for that procedure one advantage of this procedure is there is no chance of sepsis and is not the same method as TRUS which goes through the rectal wall into the prostate. Please don’t worry about the procedure I have had it done

User

Posted 13 Jun 2018 at 10:57

Hi Alan,

I'm not worrying about the template biopsy particularly, more about what it might show. The oncologist whom I saw on Monday said that in his experience a PSA level as high as mine is more consistent with locally advanced PCa than localised PCa, and that obviously has implications for the chance of a long-term cure. Unfortunately I've always been a worrier - can't help it!

I'm hopeful that this will be the last test I need to have. They seem to have been going on for an eternity, although I'm well aware that I've been fortunate in getting all this done a lot more quickly than many people do, and that it's actually only been 41 days since I got the results of my initial PSA test.

Once the results of the template biopsy come back they should give me a definite staging for my PCa and then a treatment plan can be put in place.

Chris

User

Posted 13 Jun 2018 at 12:59

Chris

well, as I said, I am locally advanced and am on curative treatment plan.

As long as my blood results next Thursday show lowered PSA and Testosterone I will move onto to curative RT mid July

so once your kidney and aneurysm are sorted you will be on the same path as me.

Im hoping to be cured by October 🤞

User

Posted 13 Jun 2018 at 13:29

Fingers crossed for us both, Alan!

Cheers,

Chris

User

Posted 13 Jun 2018 at 14:36

Hi Pallance, My husband was diagnosed T3B G9, He had HDR Brachytherapy in April 2015 and he has just completed three years of Prostrap and had radiotherapy in 2016. He has found the HT caused fatigue and whilst he was having the RT he had disturbed sleep fatigue and felt generally exhausted, at weekends he was much more energised, and we worked on the garden. His treatment has been curative, and we hope it has done its stuff. We have a small holding to run, where we grow all our veggies and he has continued to work as a pro musician and singer, although he does less gigs. He is not a cyclist, but fit and he has worked as a fitness instructor when he was younger. He is will be 68 next month, we love travelling, and plan to backpack around SE Asia this winter. We also have moved four tonnes of coal and wood this week. We live very rurally and try to be as self sufficient as we can.

He has side effects he gets muscle ache in the pelvic area, some days of fatigue some days he gets emotionally low, but bounces back after a day or So. Has it changed our life, yep! our normal, what ever that is has changed, we have travelled less. Was it worth it YES, we have lots of living to do.

I hope this is useful to you.

All the best Leila.

User

Posted 13 Jun 2018 at 14:37

Originally Posted by: Online Community Member

I hope this is useful to you.

All the best Leila.

User

Posted 14 Jun 2018 at 11:53

Every time I go to one of these consultations it's with the seemingly forlorn hope that someone's going to offer me some treatment, but that never seems to happen!

News from this morning's consultation with the vascular surgeon is that the CT scan has clarified that I do indeed have a 4cm aneurysm on my splenic artery. This is large, as aneurysms go, but the good news is that it appears to be almost entirely filled with clotted blood, with very little blood flow through it, which indicates that it's probably been there for a very long time and poses very little risk.

The next step is to take it to the great and the good at the vascular MDT, which will happen either tomorrow or next Friday, and (finally!) get a decision about treatment for it. This will probably either be to do nothing at all, if 3D imaging shows it to be "balloon shaped" with a narrow neck, or to block it off with a stent if it's more of an open bulge out from the wall of the artery. 3D image reconstruction happens at the MDT, apparently. Either way it's unlikely to be a surgical procedure, and shouldn't have any impact on my kidney surgery. So all in all, I suppose it's moderately good news, and at least the additional scan didn't show up any new problem.

So, there we go. This week I've had a CT scan and by the time I've had my appointment on Saturday will have seen three different consultants (oncologist on Monday, vascular surgeon today, and prostate surgeon on Saturday). I hope I'm nearing the end of the road as far as diagnostic tests go!

Cheers,

Chris

User

Posted 14 Jun 2018 at 12:25

I suppose the good news is that these appointments don’t have weeks in between Chris. Keep your chin up pal.

User

Posted 14 Jun 2018 at 12:50

Oh, I suppose it is understandable, given that there are essentially three different issues, each with its own specialist, but it would be nice to think that some actual treatment would begin soon. I know I'll feel a lot happier when it does!

How long was it for you, Alan, between your initial PSA test and starting treatment?

Chris

User

Posted 14 Jun 2018 at 13:21

Originally Posted by: Online Community Member

Chris

I started my journey on 26th January and started treatment 8th April, so I think that’s 41 days, just about 6 weeks?

i had 5 scans in total, Bone, MRI and CT were routine to eliminate possible mets, then 2 more detailed area MRI scans where the radiographer was unsure about results, 1 was a spot on my spine that thankfully turned out to be nothing and 1 on my pelvis, that has turned out to be Paget’s disease, a bone growth abnormality, something that is nearly always discovered by scans looking for something else. Once I am through the cancer treatment I will look into what can be done about the Pagets disease

My detailed timeline;

PSA blood test 26th January

result of 38 PSA 30th January

DRE with consultant 8th February

MRI Scan 9th February (got last minute cancellation as I live 2 miles from hospital)

Trans perineal biopsy day case 1st March

Oncologist review of biopsies 15th March

Gleason 4:5 = 9 in 11 cores on left, greatest core was 100% total cores 60%

Gleason 4:4 = 8 in 5 of 12 cores on the right, greatest core was 80% total cores 20%

So as I had 32 biopsies, 9 were clear.

Bone scan 23rd March mets

CT scan 26th March mets

Consultant review 29th March

Detailed spinal MRI scan 3rd April mets

start Bicalutamide 8th April

Decapeptyl hormone injection 23rd April

End Bicalutamide 6th May

MRI scan 11th May mets

Blood test PSA Testosterone check 15th June

Full Oncologist review and RT planning 21st June

The last two are Imminent

I have put this whole list as it might be of use to other members of the website to give them an idea of what occurs

Edited by member 14 Jun 2018 at 14:16 | Reason: Add information

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