My husbands recent diagnosis of advanced prostate cancer

Well another 3 months has passed and so another PSA test. Although a couple of sleepless nights, nervous as hell with a churning stomach, I think my anxiety levels improved this month on last….something to be thankful for.

Anyway latest test PSA <0.025 🙏🏼 Testosterone was done 3 weeks ago and has risen to 10 👍

I really do have to keep pinching myself, I can’t believe how different things are to his original diagnosis. I feel we have been so so lucky and fill up everytime I think of it! How different things could have been now. He’s been so fortunate to have recovered so well and quickly from his op aswell, so regardless of what the future holds we have been able to have an incredible year with lots of adventures. Forever grateful ❤️

I want to keep posting in here to hopefully provide some hope for anyone just starting this journey. It’s been a difficult few months on the forum with of course some really sad stories that have brought me to tears on many occasions. As many people say on here we are one big community and support for each other, and I do constantly think of all who are still having more challenging times and really do send all my best wishes to you all x

Hormone treatment is effective quite quickly. Within three months it had knocked my psa from 21 to 0.8 so I think if he had been on it over a month by the time of the scan it would have already suppressed a lot of the cancer.

Once the cancer was suppressed I don't know if it could still show up on a psma scan. I do know that that when they are looking for reccurant cancer they wait until the psa has risen to a moderate level before doing a psma scan in order to make sure it is at a detectable level.

With his PSA being of no concern in 2019 to 5.1 in 2020 and 8.3 in 2021 they just don't seem like numbers which are high enough or rising fast enough to suggest the cancer has aggressively spread. But there are people on this forum who started with low PSA under 10 had the operation only to find it had spread, so nothing is certain with this disease.

I agree a good diet and good health are the best place to be with starting any of the treatments. They can also make for a happier and enjoyable life, so if they make you happy, do it; if they make you miserable, don't.

Yes, my journeys going well. You never know what will happen with this disease, but I'm a born optimist. 

Hi Elaine,

I would consider moving nerve sparing higher up the list. At the moment you are at the start of a very scary journey. And your husband is on HT which means he is perhaps not remembering how much fun a fully working penis is. So your thoughts will definitely be "avoid death by cancer whatever the cost". After all the treatment is over then hopefully death will be avoided, then in the cold light of day you may wonder, could we have avoided death and kept a working penis? I agree no looking back, but what I am trying to do is give you the benefit of hindsight now rather than in the future. Don't forget RT can have an adverse effect on bladder and rectal health, but it is more likely to be later in life. 

I would also say that an ebullient surgeon is not unusual. A man who cuts people open to make them better needs a lot of self confidence. Winnie the pooh's friend Tigger has a lot of positivity, but I wouldn't want him to operate on me.

I should point out I was not offered surgery and I didn't push for it, so I did not have to make the tough decisions you and other members have to make.

I'm only raising all the above points to help you look at the problem from different angles. 

Chris & Ivan,

I really can’t thank you enough for today, it feels a little scary sometimes all of this but for me to be able to come on here and ask for reassurance or advice and get it as quickly as I have today it just helps so much.

Rob has drank about 3 litres of water each day…I literally hand him another glass as soon as one is finished 🤦🏻‍♀️😂

Really pleased to say he has now emptied his 500ml bag 6 times since 5pm, it definitely seemed like some clots were blocking everything. The last bag full was a very light rose colour, the lightest it’s been since he came home….so really happy with that.

I did manage to cook a Christmas dinner through all the drama 😂 hope you’ve both managed to have a nice day and I wish you all the very best x

Sorry to hear that Elaine but I wonder is there any need to be concerned? As you pointed out, many labs only test down to 0.1 (as mine does, after initial testing down to 0.04) and I was told by the specialist nurse who speaks to me shortly after my tests (now every 6 months after my surgery on 21/12/21) that it was because very small movements below 0.1 are often not cause for concern.All it does is create stress to the person receiving the figures. I was also told that the body often creates very small amounts of PSA even when there is no prostate.

Ivan

Edited by member 11 Feb 2023 at 15:38  | Reason: Not specified

So we made the decision to go on holiday as no point waiting around when no one seemed to want to do much at the moment. We set off as planned and got the eurotunnel 27th June. Decided to stay in France a couple of days before the big drive to Nordkapp.

Three days in I got a phone call from Christie’s to book Rob in for a PSMA pet scan 🤦🏻‍♀️ well this was unexpected!! We’ve haven’t had an appointment with the oncologist but I asked for a referral and I know she requested robs info from London. She has obviously looked and thought worthwhile to do the scan at this point. For us it was a no brainer, we travelled home yesterday and scan tomorrow.

He’s having F18 (his previous PSMA was G68) just a different tracer?? Do they work differently does anyone know? 

So a bit disappointed we didn’t complete our trip, but glad we will hopefully have an idea of what is going on soon and if more treatment needed we will hopefully still have a chance at curable/very long remission 🤞🏼🤞🏼

Hope everyone is doing well x

You're doing great Gaz and certainly no guilt should be felt. I honestly just love seeing if you guys put good news on here and I’m sure everyone feels the same. I’m not sure the fear will ever go away but I assume it gets easier the longer you stay in remission and as long as you keep on living and loving life then that’s all good 👍 

All the aches and pains, are probably to do with being 75, HT and RT. In that order.

RT causing blood clots? I don't know, I have not heard of it. Andy and Lyn have been on this forum longer so maybe they will know.

Medication to clear blood cloths is common, I'm sure it will work. Far better they got stuck in the lungs than reaching the brain.

Considering where you were with the prospect of life long HT which probably would have been failing about now; you are now three years down the line, and still on a curative path. I don't think you've had the easiest three years, but it's been better than for some. 

How much longer has he got of HT? It will be less important more than six months after RT, so by June start weighing up Quality of Life Vs risk of recurrence. 

The fact that he has already had bical and started on Prostap could make the PSMA scan less reliable, as well.

Given the choice, I would talk to the oncologist about the benefits of starting enzalutimide early - until the pandemic, this wouldn't even have been offered at your husband's stage but the results so far have been very encouraging and it is less risky than chemo if he gets Covid.

Hi Lyn,

Yes we were given both as an option, I asked if it was now technically curable (although not quite sure what that means) and he said yes. We could go for surgery to take the prostate and the nodes away but would need RT afterwards. I’m wondered if the amount of RT would change because they have taken the bulk away or would that not matter?

I just assumed my husbands cancer was now locally advanced. I’ve looked through the PCUK diagnosis book and T3a N1 M0 comes under that section. We haven’t formally had a new diagnosis yet though so maybe it hasn’t changed.

If he goes into surgery knowing that he will need RT / HT afterwards, this is called adjuvant radiotherapy not salvage radiotherapy. Some people believe that it is worth removing the bulk of the tumour to slow down spread while others would argue that all you are doing is imposing double the risk of side effects with little time after the op to recover urinary continence, etc before more treatment brings additional difficulties. Those people would argue that you may as well just go for the RT / HT as the radical (main) treatment.

I think with T3a and one or two lymph nodes involved, you will have to accept that some cancer will be left behind by surgery, nerve sparing or not. The RT will be required to sweep up what is left.

I will try and give you an analogy. Think of the nerve bundles as the wooden branches of a tree, and think of the leaves as cancer cells. So this tree is a bit weird, as I'm saying it is completely healthy if it has no leaves, you will have to bare with me on this one. If the surgeon spots leaves on this tree he will have to cut it down, OK you might be lucky there may only be leaves on one side, so you will have partial nerve sparing. 

Now think of RT as the Mother of All Hurricanes. It is going to blow through that tree and strip out all the leaves, you may lose a few small branches as well. If you are unlucky one or two leaves may survive and if that is the case then you still have cancer. 

Now I think you have no choice than to have RT whether you have surgery or not. So that hurricane is going to be blowing through that tree, and it has a high chance of stripping all the leaves. Sure the surgeon can definitely chop the whole tree down, but he may leave some leaves elsewhere so you need that hurricane whatever.

Not a perfect analogy but I hope you get the picture.

Now I would argue that if you are having RT anyway, forget the surgery. RT alone may do the job. Alternatively I can see a strong argument for saying well let's get rid of as much cancer as possible because the prostate is pointless if you don't want children and if you remove that pointless gland and all the cancer in it you only have to worry about the cancer which has escaped. The problem is the damage done in pulling the prostate out, and if the RT has a good chance of killing all the cancer why take the risk. 

Though I am happy for everyone on this forum, unless someone is ten or fifteen years post treatment take their success story with a pinch of salt, that includes me I am only one year post HT. Anyone with my diagnosis has a 98% chance of surving prostate cancer for five years anyway. Rather than celebrate my prostate cancer survival I should be celebrating not having a road traffic accident as I was more likely to die from that than PC in the three years since diagnosis. 

You're right some urologists are a bit miserable, but I think I would be if that was my job. 

Yes, I live just outside Glossop, I had treatment at Christie's. I probably remember the names of the miserable urologists but we won't discuss them here. Do you live near by? I am not averse to having a chat over a pint of beer.

Hi gaz, just spotted your post as I was typing, thanks for the vote of confidence, and for acknowledging, we can only talk about success of treatment to date. We don't know the future, but if your an optimist like me no reason to think anything will change. 

That is so true Dave, the best thing we could have done was to get the second opinion. And the best money ever spent on the PSMA pet scan. 
I don’t suppose we’re expecting miracles but we have so much more hope than we did before and more options. 
I’ve got to try this week to get the referral for the op as our GP has said they can’t refer out of the area! I’m going to email ccg & NHS England to see what they can do. Not sure if anyone has had this problem before?

Interesting paper on PSMA scans after HT initiated, it looks like HT may actually increase the sensetivity of PSMA PET scans.
https://link.springer.com/article/10.1007/s00259-019-04529-8

Regarding the <0.1 result after HT but prior to treatment that is a very good indicator so all good news..

Edited by member 24 Nov 2021 at 08:56  | Reason: Not specified

good luck to you both your OH is in good hands has you have noticed everyone is here for one another some fantastic advice by several people on here good luck and have a happy Christmas  gaz 

Yes I think you’re right OhDear, it must be much more of a challenge to do this on your own. I know my OH is very grateful for all my help….although I do get a few eye rolls when I’m constantly mithering him 😂 even worse he can’t escape me as we’re staying in a small flat 😂

Rob definitely feels the same, think he will be better when he finally ‘goes’! I just made him a smoothie yesterday and a huge blended soup, I’ve got him reluctantly taking a bit of prune juice and he’s been having the movicon so hopefully sometime soon. He hasn’t been passing much wind which I find a bit strange as I was expecting him to be farting all the time 😂 told him he best not be holding it 🤦🏻‍♀️

Had a bit of a stressful day yesterday so still not had time to properly read your thread, I will do today. Take care and I wish you well with your recovery. Hope you manage to enjoy a nice Christmas x

Ivan 

Should have mentioned my long term catheter is a suprapubic catheter, i.e. it comes out a few inches below the belly button. I did have a urethral catheter on about 13 occasions and sometimes had a urethral and SPC at the same time. It is surprising how we can adapt to new situations. Hopefully you and Elaine's OH never have to go there.

Thanks Chris

Morning Elaine

First of all, I am sorry to hear that you and Rob had a restless night last night.

I am responding to your first message rather than your second one (06.42) as people more knowledgeable and qualified than me will be able to answer it in a much more detailed way. I never had any problem with my day bag  filling up, it was always the night bag that didn't start to fill up until I had given the pipework a shake etc. Like you, I was constantly  checking it to see if it was working etc. At one stage I was contemplating not using the night bag and to just set my alarm for every couple of hours so that I could check whether the day bag needed emptying. I found that it helped to have my head and torso at a 45 degree angle to the bed and to ensure that the pipework was not curled up in the bottom of my bucket holding the bag. I also found that exercise when I had my catheter in  gave my urine a more pinkish hue so stopped doing any exercise (obviously I didn't just lay in bed and ring a bell for my helper to attend to my every need and whim) and found that this returned my urine to a more normal colour.

Ivan

Thanks again guys for your replies. He slept in until about 11 and had a 1500ml bag by then 🤦🏻‍♀️ and no pink 🤷🏻‍♀️ so good news. It just felt a bit stressful again last night…you sometimes feel like it won’t start flowing properly again.

I think we definitely did too much walking the past couple of days and that is what has caused a little bit of blood blocking it. We are now resting as much as possible until catheter removal on Tuesday and consultant appointment on Wednesday.

Probably spent too much time reading through histology report trying to make some sense of it too so sleep was bound to be limited for me. 

Chris, Ivan & Gaz….wishing you all the very best for 2022. Fingers crossed a good year for all of us x

No particular view about the histology - some of it is guesswork until you can clarify with the surgeon. Obviously, it is good news that they have amended from T3 to T2 and it makes no difference whether it was T2 a, b or c once the treatment decision has been made ... his prostate is now in a petrie dish so T2 is T2.

The upgrading to G9 is not great but again, hopefully it is all in a lab so makes little difference now.

The stick in the ointment is the positive lymph node / N1 which you are already aware increases the risk of recurrence and the need for adjuvant or salvage treatment (depending on his first post-op pSA and then PSA readings over the coming years). The comment about there being no lymphovascular invasion makes no sense to me in the light of the N1 but the surgeon can clarify that for you.

Elaine hope the TWOC goes well, due to ongoing issues and being catheterised on a dozen separate occasions I have had a dozen twocs and never failed. 

I always made sure I was well hydrated before getting to the hospital. Don't hold back on drinking water in the belief you will will leak less , far better to leak than have another catheter put in because he can't urinate. Listen to your nurses at the Twoc I was told to drink my water in a controlled manner and not drink the lot in one go.

Make sure he is relaxed and then relax a bit more, the removal is frequently described as wierd, I have never had a painful urethral catheter removal. Those first few urinations might be uncomfortable but for me it soon went back to normal. I did often pass a very small amount of blood at the start or finish of the stream, I also passed bits of scabs and debris for a few weeks after the twoc / op.

Following removal I had to pass two samples of 100mls before being scanned to ensure the bladder was draining properly.

A change of clothes in a bag, some pads, a cover for the car seat and a urine bottle is a good idea just in case. Leaking when standing up is often reported , hopefully he will soon learn to tense the pelvic floor muscles as he stands.

I hope his future recovery goes well.

Thanks Chris

Afternoon Elaine

Yes,  it is tempting to drink less to stop the leaking but I was told by the nurse that this is exactly the wrong thing to do. So, I am drinking the same 3 litres of water a day that I did when I had the catheter in. I understand that performing the pelvic floor exercise standing up is best as that  better strengthens the muscles. I was told to breathe in and then when breathing out to perform the technique. I was also told to vary how I positioned my feet and that I should sometimes undertake the exercise with my feet pointing away from my torso, sometimes with my feet pointing straight ahead and sometimes with my feet facing inwards. Apparently, this procedure strengthens  different parts of the pelvic floor. It was also suggested that I could perform those exercises when, for example, I was waiting for a lift, but I decided  not to do so as I was worried that if I did  I would be arrested for public indecency.

I think staying overnight in London when Rob has his catheter removed is a good idea as it will take him a while to get use to the idea that his urine is no longer collected in a nice little bag. It is a strange sensation not having full bladder control, but it does get better and is another step on the road to recovery

Ivan

Great , Elaine, that everything has gone well and that your OH is mostly continent. Leakage when moving around and when coughing etc is to be expected and should improve over time. Still need to do pelvic floor muscle exercises and drink  a good amount of water each day.

Ivan

Thanks Chris. And no definitely no marathons yet…or ever as far as he will be concerned 🤣

Great news Elaine. Long may it continue like that. I have my next 3 monther next week so getting a bit nervous as always.

Hope you’re OH is doing ok now and glad something has worked for him.  
Rob has stayed off Vitamin D now for over 2 weeks and not had a single heart palpitation. He had a 24hr ECG fitted last week so waiting for the results of that….I’m assuming everything will be fine and we can say it was the Vit D that caused them. Take care x

Thanks Ivan. Yes we are so grateful that we found a fabulous surgeon who would do the operation. We know we have to wait until his testosterone returns to see if anything is still lurking but we’re in the best possible position we could be right now….and no regrets whatever happens.

Grest news for you too Ivan, so pleased things have worked out well and long may those PSA figures continue for you also xx

Really good result, I don't think you could have asked for anything better.

Whenever you have PSA anxiety sing to yourself "Que Sera Sera" by Doris Day. I know Doris isn't singing about PSA Tests but she is singing about an uncertain future, and an uncertain future is always more exciting than a stayed present, or settled past. 

Good news, Elaine and long may it continue

Ivan

Yes, I am doing well too. Last 3 PSA scores were all less than 0.04 mg/L (The lowest Addenbrookes tests to) and my next test is in November.

Ivan

Such great news! Onwards and upwards. Sending love x

Brilliant news Elaine. Best wishes to you both.

good to hear such positive news Elaine all the best going forward gaz

Thanks so much Jamie. So pleased that you’re recovering well from your op too with great histology report and PSA.

I do believe in never giving up hope that things can change and improve, luckily for us this has very much been the case so far 🤞🏼 X

I’d mentioned previously about Rob getting some heart palpitations. It seems to have only started since his diagnosis, so not sure if it could have been triggered by HT or maybe just the stress of diagnosis etc. Or just completely not related of course!

Anyway he was originally prescribed a beta blocker (bisoprolol), he didn’t start to take them and in the meantime we got an appointment with a cardiologist. We mentioned about his prostate cancer and recovery and he said not to have the bisoprolol as this can cause ED, he then prescribed him a different medication….not sure of the name.

I’m just posting this in case there are others in a similar situation who have been prescribed beta blockers and struggling with ED, this could be an explanation. 

Elaine

Far too early for you to worry. Was the blood sample taken at exactly the same time of day on both occasions? Is there any possibility of a bit of infection? Had he had an orgasm before one and not before the other? So many variables.

Elaine, similar experience to Lyn, two vials filled from the same draw off , sent to the same lab at the same time and had a difference of 0.01.

His histology was negative margins and no extraprostatic extension, which was good. 

It took nearly three years for my PSA to go from 0.03 to 0.2 and my histology was not good. I think you can relax. 

Thanks Chris 

Try not to worry Elaine. I know easier said than done. Like everyone else on here you’ve been through some very rough times, so try not to worry about the very small stuff. Rob’s PSA is still classed as undetectable. Worry doesn’t change anything so try and re-focus and think positive. I know it’s hard but worry can be crippling. We both know that from how much we both worried about our husbands just over a year ago. The mental torture is almost unbearable. Try not to put yourself through it again without good reason. XX

Hi Elaine, I can see you have got this in perspective at the moment it is nothing to worry about. It's worth making the post because in a few years hopefully we will look back on this thread and see that a few blips up and down amount to nothing more than a hill of beans. Of course we might be looking back and say 'ah that was the start of a recurrence' but it's too early to say now, and I hope it is the former not the latter.

Whatever it amounts to in the future, 18 months ago you were dealing with a PSA of 8.3, today you are dealing with a PSA of 0.029. So you have came a long way in the right direction. 

Yes ok thanks Elaine  I give a lift to a guy who's psa keeps fluctuating found out he had bladder infection  stay positive 👍

An early scan would be great to rule out distant spread, you should then have the option for salvage RT asap.

I suspect we’ll get referred at the appointment this week.  We’ll need to rule out the original suspected bone met but that came back negative on the initial PSMA pet scan 🤷🏻‍♀️. I was going to book a scan before next week’s appointment in London but he’s said no for now.  Will get 2 different opinions over the next week and hopefully a quick referral to oncology for another one 👍 x

Go on holiday.

Elaine, you probably already know there is no guarantee the PSMA scan will pick up anything. My own PSA tests have been erratic and no one can explain why. 

Holiday does sound good. 

Thanks Chris 

Edited by member 13 Jun 2023 at 13:28  | Reason: Not specified

Scan done 👍 now the dreaded wait for results! Really have no idea how long that could be but trying not to stress too much about it.

Been keeping myself busy and decided to do a 90 day challenge to walk 5k everyday. So far I’ve raised over £1500 for prostate cancer UK and still about 65 days to go. 

Thanks Peter, yes we feel we have done the right thing and that’s always been important to us…we could have had huge regrets not coming home.

Yes I set up a just giving page, it’s been quite overwhelming all the support I’ve had. Really pleased to be able to be giving a little something back 👍

So we had appointment yesterday with oncologist. PSMA pet didn’t show anything as possibly expected with low numbers. It has given some peace of mind that there are no big tumours around, and it’s the second scan that it didn’t show in his pelvic bone too.

She recommended that Rob has SRT (to the prostate bed and pelvic lymph nodes) starting in about 3 months time and 2 years of HT.  It’s such a difficult decision as we have no idea where the cancer might be (so could be unnecessary treatment) but we worry if we wait for it to show it may have spread further in that time.

Not looking forward to hormones again or the prospect of RT, but to be honest we were very grateful that we had options for treatment and still on a curative pathway.

We still have no regrets of the path we have taken to this point and still think the surgery was completely worth it. The help and support we have had from Robs surgeon is incalculable to us and we feel very lucky to have found him. 

Rob had hormone treatment initially of course (prostap 3), he has been prescribed this time decapeptyl. I think I would feel happier sticking with what we already know as he was ok on it. Are the 2 exactly the same does anyone know or could side effects etc vary between them?

So here we go again. Yes I’m worried and wish he didn’t have to go through this again but he’s feeling ok and we’re both trying to think positively. We know we could have had much worse news yesterday xx

I am sure he will good luck with his treatment 👍

Good news Maud and long may it continue x

Hi Mark1,

Could you start a new thread? People on this site don't officially "own" a thread, but they do seem to evolve and tell one person's story.

If you start your own thread, all the details about you will end up in one place.

Starting a new thread is harder on this site than it should be. You need to choose a topic even though no one pays attention to it, and it must have a unique title. You then have to wait a few hours before it is approved.

I guess there are areas they want less radiation in, such as bowels and bladder, and other areas they know will want a high dose such as prostate bed, plus everywhere else which wants a moderate dose. So the planning scan will produce a 3d map, yes it will be a bigger map, bit it still needs to be accurate and the tattoos mark where the centre of the map is, which may not actually be the prostate bed.

An analogy would be the London Ulez map, compared to the old smaller congestion charge zone. If you said the new map is 40 miles wide so it doesn't matter if we misdraw the borders by a couple of hundred yards, I think you would find some very upset people on those borders.

Elaine, I think techniques have changed since my treatment in 2017, make sure he gets his bladder full right. Being hydrated does make a difference to how water passes through the body. I drank on the way to hospital, checked with reception that there were no delays. I then emptied the bladder and drank the required amount of water.

Hope all goes well.

Thanks Chris 

Hi Elaine,

Good luck for your OH and the RT today. If it’s any consolation I found RT a breeze compared with HT. he’ll get into a routine with the enemas and water consumption before each session and hopefully your times will be about the same each day, it makes a difference I think. One thing I found is that it helped if I did something to keep my mind of needing to pee for the 30mins wait. I wrote my poem about my journey and the time flew past.

If you’ve got a long journey home, take an emergency kit including a pee bottle, towel and wipes in the car. The urgency can increase during treatment and just having that safety net with you in car helps psychologically. I on,y needed to use it once in 20 sessions.

All the best

Derek

In the end I only got 20 session of RT as the Onco wasn’t happy about collateral damage to the bowel after the CT planning scan….my plumbing was in the wrong place! He thought it was higher risk than that of spread elsewhere so I will just have to wait and see.🤞

Elaine, morning is good as is 15 mins drive. If the staff are anything like as wonderful as the ones in the Western in Edinburgh, Rob will be put at ease.

Surprised he didn’t need to drink water for his plannng scan? Maybe they’re using a different type of machine?

Derek

When I had RT at Christie they did not ask for a specific bladder level. In fact they wanted you to empty your bladder just before RT. It depends on the hospital and where they are zapping.

Thanks Dave.

Yes possibly, it’s not something he’s so used to, we’ve always done lots of walking with our dog without problem and now he struggles sometimes and is often limping so we can’t walk for long.

Not sure if the clots are a result of the RT, the chest physician we saw seemed to thing that would be the case but I suppose we’ll never know for sure. Will see if this turns out to be more clots around his liver this week I guess.

Yes from his initial diagnosis we are in a much better place. I am thankful for that, and realise how much worse things could have been. I suppose it doesn’t stop you from having your own moments of worry etc though.

He’s got over 18months of HT left 🤦🏻‍♀️ really good advice though and exactly what I’ve been thinking….my worry is the G9 if it was lower I don’t think we would hesitate to stop the HT. If we don’t get to see oncology before feb (next injection date) then we have an appointment already in May so could discuss it then.

Hope all good with you Dave and everything still going well x

Yes, I'm fine and due my next 6 month post-operation PSA check next week.

And yes, diagnosed during 2021 and operation late December 2021.

Ivan

Best of luck Ivan for next result. You gave us a lot of support in the early days for which we are very grateful.