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My husbands recent diagnosis of advanced prostate cancer

User
Posted 01 Sep 2021 at 12:58

Just wanted to say hello…well we’re now in the club that no one wants to join! I’ve spent some time reading lots of posts which have been very helpful so thanks to everyone on here for that. 

 

My husband was diagnosed with prostate cancer officially in July 2021. His PSA was 8.3, Gleason score 4+3=7 and grading is now T3a N1 M1b. He is a young 73 (I am a lot younger) and he has always kept pretty fit and healthy. 

His PSA in 2020 was 5.1 which our GP wasn’t overly concerned about and made us feel quite ok about it….he did refer him anyway but then covid hit and they didn’t see him for 12 months after that! He had his MRI, we didn’t hear any results from this but just a phone call from a secretary to book him in for a nuclear bone scan….which was something of a shock! At that point we pretty much didn’t eat or sleep for 5 days with worry and it took me having a complete breakdown on the phone to get his pirads 5 score and that something low grade had been seen on the pelvis. Bone scan and biopsy booked on sequential days the following week. 

Biopsy although I don’t know how many cores were taken or which ones positive, he received the 4+3=7, bone scan confirmed something in his pelvis and CT scan booked. CT results seemed to suggest possibly something in one node so score was upgraded to N1.

Treatment commenced with 4 weeks bicalutimide and a prostap 3 injection in the middle. Oncology have given treatment options of docetaxel or enzulutimide aswell as radiotherapy to the affected areas. We haven’t confirmed with them which way to go and are booked in again at the end of September. 

 

We have sought a second opinion. We received a phone call Friday 20th August suggesting they don’t think it’s bone mets….this was once again a shock (although welcomed) not wanting to get our hopes up too much but we are just praying they are right. Yesterday had a PSMA pet scan and we should have the results on Friday. We feel this result changes everything but the anticipation really is a struggle.

 

We have really tried to be so positive in all of this and made lots of changes to diet and lifestyle. Oncology gave him potential live expectancy though and it’s really thrown him…so I’m really just trying to pick him up from this at the moment.

 

Not quite sure why we weren’t offered a PSMA pet scan and why I’ve had to seek one when surely it couldn’t be 100% bone mets if we have differing opinions?

User
Posted 02 Sep 2021 at 18:15

Hi Elaine, I'm glad you're finding your feet. I hope the scan results give you some certainty. 

Dave

User
Posted 23 Nov 2021 at 20:33

That is a good score. The definition of undetectable is confusing. Strictly speaking a number with a < in front means below the limit of the machine used to to test it. So if a hospital bought a really old testing machine which couldn't measure PSA below 10 even your husband's original PSA of 8.2 would have been reported as <10 and hence on that machine it would have been classed as undetectable. Of course such a machine would be useless and whoever bought it should be sacked. About 20 years ago test machines were able to measure down to 0.1 so anything below that was <0.1 so undetectable. Newer machines were introduced capable of measuring down to 0.03 so on those machines undetectable was defined as <0.03  these machines can be described as ultrasensitive. 

The problem with ultrasensitive PSA tests is that they pick up tiny amounts of PSA created by adrenal glands so even women would have a detectable PSA. So now some hospitals have gone back to reporting anything below 0.1 as <0.1 even if they know exactly what the number is, to avoid stressing the patients. So your OH's PSA at 0.083 is delightfully low, and if it had been reported as <0.1 you would have been very happy. At his next test it may be 0.085 and that may cause some anxiety, but again if it were reported as <0.1 you would be happy.

All of my PSA tests whilst on HT were reported as <0.1 . I presume the hospital I was under had modern machines capable of reporting to two or three decimal places but they chose not to, as there is no point in having patients worry about an increase of 0.001 on a test.

The only time reporting to more accuracy than 0.1 may be relevant is for someone who has had a prostatectomy. A change from 0.03 to 0.08 might be a cause for concern. But for someone with a prostate on HT anything below 0.5 is good, particularly if it is falling staying the same or only rising slowly. For someone post RT and no longer on HT a figure under 2.1 is good again as long as it isn't rising rapidly.

So your OH's PSA of 0.083 is to all intents and purposes undetectable and if in three months time he is still on HT and it is still <0.1 it is still to all intents and purposes undetectable. All undetectable results should be celebrated so get down the Christmas markets and have a mulled wine.

 

Dave

User
Posted 25 Dec 2021 at 20:41

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

User
Posted 22 Jan 2022 at 18:50
No problem - just keep in mind that this was a simplistic or visual explanation - in reality, lymphocytes are produced in the bone marrow and then carried to the lymphatic system ready for action so cancer cells could be moving in and out of marrow. It's a bit like the central heating system isn't it - water goes through the boiler and is then sent to the taps - if you want hot water, it is diverted through the heating element on the way. The radiators are heated from the same boiler - goes through the same heating element and then flows off around the house. The radiators are supposed to collect all the sludge at the bottom and you hope it never gets into the boiler.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Sep 2021 at 19:40

Hi Elaine,

I think the GP was right not to be over concerned (but only with hindsight may he be proved wrong) like most people of your husbands age he has prostate cancer, it is just a question of how serious it is. The T3a N1 M1b G4+3 doesn't look good on paper, but as you have said it is really a case of how reliable the N1 and the M1b scores are which will make the difference. If the PSMA Pet scan was done after hormone treatment was started I don't think it will be a reliable scan, the HT will be suppressing the cancer and even if it is there it may not show up. The Docataxel and Enzalutamide does suggest the onco thinks this is advanced and needs treating aggressively.

I was on HT for two years, it was not a problem, but I would not have wanted to be on it for the rest of my life. I would definitely want to be sure I was not being overtreated.

Changes to lifestyle and diet are unlikely to make any difference to this cancer. So if he likes doughnuts I would tell him to keep eating them, because he may as well enjoy life.

 

 

Dave

User
Posted 01 Sep 2021 at 20:21
I can understand why the news that there may be no bone mets has made you feel more optimistic and even questioned whether the treatment plan could change but, in reality, the N1 is just as worrying as the M1 so unless the PSMA scan indicates that both the N1 and the M1 are errors, you will stay on the current pathway. The reading of scans is often subjective but his data has probably been looked at by a multi-disciplinary team (MDT) so their view (T3a N1 M1b) may be more reliable than one other consultant's interpretation. It will be worth you asking the local team whether the T3N1M1 was indeed produced by a MDT.

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.

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

User
Posted 01 Sep 2021 at 21:06

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. 

Dave

User
Posted 03 Sep 2021 at 17:22

Well that is good news.

Now to consider what treatment to have? Well the first thing is he is currently on HT and that will hold things at bay whilst you decide.

I will start off with the least aggressive and work up to the most aggressive. I'll say what my opinions are but do bare in mind I am only an amateur with my own biases and no experience or training in anything medical.

Active Surveillance or Watchful waiting:

With some G4 present and already evidence of spread I think that within five years with no treatment he would be in fairly bad health if not dead. If he were 85 this might be a good option, he would probably die of something else before the cancer killed him and any treatment would reduce the quality of life which he has left.

Hormone Therapy:

This is the current treatment plan, it will hold the cancer at bay for a few years, it will not kill the cancer, the cancer will become immune to HT and may become active again. This could be in as little as two years or as much as fifteen years. Chemo would almost certainly be required at some point

Brachytherapy HDR, LDR:

As there is some evidence of spread either of these would be unlikely to kill all the cancer. In combination with EBRT they may be useful.

EBRT:

If anything has a chance of killing all the cancer this is it. It would have to be aimed not just at the prostate but the whole pelvis area. It would be hitting the bladder and bowel and causing some collateral damage. There is evidence of cancer in near by lymph nodes, if it has spread beyond the pelvis then there may be micro-mets in other parts of the body, and they will not be killed so he will not be cured and will end up on HT or Chemo etc.

Surgery:

This alone will not cure him, as the cancer has spread. It would have to be accompanied by EBRT (in this case it is called Adjuvant RT as it is planned to be given. SRT is Salvage RT as it was not planned for). This has the potential for incontinence, ED, and other complications and pain from surgery. Over half the people on here who have had surgery I would say are happy with their surgery, some have some complaints, but this forum is very much biased towards people with problems. 40,000 men in the UK are diagnosed with prostate cancer and only about 100 are on this forum so we have to assume that 39,900 are having a great time with no complaints with whatever treatment or lack of it that they have had.

Plenty of people would say don't have Surgery if you will have to have EBRT anyway as there is no point in getting two sets of side effects, when either treatment is just as effective in treating organ confined cancer. Others would say chuck everything at the cancer and hope to kill it with everything.

If I were in your position I would be very interested in pursuing the EBRT, but if the onco said, "Look it has clearly spread beyond the prostate, and it is almost certainly in other parts of his body outside of the pelvis, so EBRT will not eradicate the cancer" then I would probably accept that a lifetime of HT was the only option.

 

Dave

User
Posted 04 Sep 2021 at 12:13

Hi Elaine,

I wasn't sure of the answer to the question of whether they reduce radiation if there has been a prostatectomy.

I did a bit if research on Google. I found this paper

https://www.auanet.org/guidelines/guidelines/prostate-cancer-adjuvant-and-salvage-radiotherapy-guideline

I think the source is credible, though the Internet is not always trustworthy.

Because I studied physics, and because I run a small business and have to read tax laws. I am not intimidated by a large scientific paper. I just skim read it and about a third of the way through, I found that ART and SRT tend to be given at about 60Gy whereas RT as a primary treatment tends to be given at about 74Gy.

So it would seem that they tailor the RT dose to the requirements of the patient, but it is not massively reduced from the maximum dose.

The word "cure" when referring to prostate cancer is very contentious. The words curable and curative intent, are far more acceptable. A man may be cured of prostate cancer but he will never know that for sure. Living with uncertainty is something you have always done, this is just another uncertainty.

I do try and steer people away from an irrational desire for surgery, by that I don't mean surgery is wrong, it is right most of the time. But sometimes people want it for emotional rather than rational reasons. 

Originally Posted by: Online Community Member

The RP vs RT debate is very difficult to resolve. Some people are not given the choice because of the nature of their particular disease. But if you are given the choice it is because the medics thinks each one has an equal chance of success. 

If you went down the pub on a karaoke night, grabbed the microphone in the middle of "sweet Caroline" and said, "I've got cancer, should I cut it out or blast it with x rays? show of hands please". The replies would be "get off", "come on England", but if you did get the show of hands 80% would be "cut it out". In fact after a few jars some of the patrons may offer to do it there and then using nothing more than a knife, fork and dessert spoon. 

What I'm trying to say is there is a very strong irrational bias towards the more aggressive treatment, try and ignore that and decide what is best for you. 

After the procedure regret nothing. If it fails, then the other one probably would have as well, if you have dreadful side effects then you may have got dreadful side effects from the other one as well. 

Good luck with your decision. If all goes well don't thank me for my advise, because the corollary to that is, that I get the blame if it goes wrong, and I definitely don't want that. Listen to the oncologists, they may even think HT and chemo are still the best option. They get it right more often than a random bloke on the Internet. 

 

Dave

User
Posted 04 Sep 2021 at 14:49
Yes, my apologies - N1 is classed as locally advanced. The debate about whether it is worth having surgery is an interesting one as with at least one positive node (and 8mm is rather big) and possibly two, there is a risk that the cancer is more widespread in the lymphatic system - they can remove the prostate and the nodes that cause concern, only for you to find that the cancer remains active. I think if it was my husband, I would want the urologist to explain why he believes that only those two nodes are affected, how confident he is that it isn't already in distant nodes. I would also want to talk to the oncologist about brachytherapy in combination with external beam RT if not already done so.

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.

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

User
Posted 04 Sep 2021 at 14:50
Also, has the urologist said whether the surgery would be nerve-sparing or non-nerve sparing? That makes a significant difference to the likelihood of permanent side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Sep 2021 at 06:53
ART targets the gap where the prostate was + local lymph nodes if the Onco is concerned about them.

User
Posted 06 Sep 2021 at 18:26

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. 

Dave

User
Posted 06 Sep 2021 at 21:28

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. 

Dave

User
Posted 12 Sep 2021 at 17:13

Yes, once you have made a decision it is such a relief. Turning that M1 in to an M0 was the best thing you could do. It has taken your OH from guaranteed HT for the rest of his life, to treatment with curative intent. A cure is always a tall order, but postponing the disease by fifteen years is just as good in a 73 year old, and even five years is not a bad result. So let's hope things all go well. The Christie have RT machines set up in Oldham, so you won't have far to travel, it's not so easy for people who need to make 100 mile plus round trips for 20 treatments.

Have a nice few days away. 

Dave

User
Posted 23 Nov 2021 at 21:04
Don't stress about undetectable PSA Elaine, it is irrelevant unless the man has had his prostate removed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Nov 2021 at 23:11
CRP is linked to so many things - high levels can be down to infection, liver damage, arthritis, rheumatism, etc. People who have had covid can have high CRP readings for a while, as can someone who has had a heart attack.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Nov 2021 at 23:25
Thanks Lyn.

I’ve emailed the gp surgery for more info.

Rob’s CRP was 2.6 in august and now 17.5….but it says satisfactory result next to it even though it is recommended to be <5

He’s never had any health worries before being diagnosed (which we are thankful for) so everything seems scary at the mo

User
Posted 24 Nov 2021 at 08:53

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

User
Posted 21 Dec 2021 at 00:40

Great, it'll be a relief to get that behind you.

Dave

User
Posted 21 Dec 2021 at 01:18

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 

User
Posted 21 Dec 2021 at 07:30

Wishing you and the OH all the best ! 

User
Posted 24 Dec 2021 at 07:38

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

User
Posted 25 Dec 2021 at 17:09

Thanks for your reply Chris.

It looks like there is some debris blocking it as some just came through and then the bag filled up. I can see another little clot again which may have started to block it up again 🤦🏻‍♀️

I’ve actually just phoned the hospital and a doctor called me back, we’re going to give it an hour to see how things are going and if nothing coming through again they’ve said to come in and they will flush it or do whatever required.

Thanks so much for responding, especially on Christmas Day 🤦🏻‍♀️

User
Posted 25 Dec 2021 at 19:23

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

User
Posted 01 Jan 2022 at 08:49

Originally Posted by: Online Community Member

Not so happy new year 🤦🏻‍♀️, not really slept at all as catheter seemed to be blocking again so been setting my alarm through the night to keep checking Robs bag. It is filling up a bit now and not as pink again so hopefully will be ok. Think we’ve overdone it with walking. The next few days will just be resting.

Elaine

Yesterday I emptied a very full bag on several occasions, drank plenty of fluids as per normal. 

I had one small alcoholic drink at midnight and after eight hours in bed I got up  and my night bag had just below 400 mls in it.

A blocked catheter will usually result in "by passing" of the catheter or possibly a bladder spasm. As the bladder starts to fill the normal action may push out the blockage. If he starts to feel his bladder is full or starts to feel ill then get urgent medical attention. 

Pity we are not allowed pictures on here, you would be surprised what can pass through a catheter.

The clear margins is good news on the histology report.

Thanks Chris

User
Posted 01 Jan 2022 at 08:50

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

User
Posted 01 Jan 2022 at 09:09

I hope things get better for rob soon Elaine  and you go on to have a better time all the best for 2022  thinking off you gaz

User
Posted 01 Jan 2022 at 13:21

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

User
Posted 01 Jan 2022 at 13:37

At this stage, he should be doing not much more than a meander to the end of the street and back, or round the garden if you have one. The risk of hernia is significant for men who have had keyhole / Da Vinci RP, and it is often the case on this forum that these were the same men who overdid it in the early days.

Edited by member 01 Jan 2022 at 13:49  | Reason: Not specified

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

User
Posted 01 Jan 2022 at 16:27
Ha! Fair enough ... I imagined you had marched him up the Brecon Beacons or something!

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.

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

User
Posted 02 Jan 2022 at 23:22

Glad things are improving and good luck with the TWOC

User
Posted 02 Jan 2022 at 23:37

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

User
Posted 03 Jan 2022 at 19:26

Thanks Jeremy.

And thanks so much Chris for your post and all the advice, this is so useful to us and really appreciated. Will let you know how we get on tomorrow x

User
Posted 05 Jan 2022 at 14:29
Sorry to hear that Elaine but definitely the right decision. I’m sure it will have healed by next time.
User
Posted 05 Jan 2022 at 15:20

Better safe than sorry but I bet Rob was all geared up to being catheter free. Interesting that the hospital scanned Rob's bladder before removing the catheter, Addenbrookes certainly didn't scan mine before removal. The difference between NHS and private I guess.

 

Did the consultant comment on Rob's histology?

 

Ivan

User
Posted 05 Jan 2022 at 19:00
Like everything else with this darned disease, there is a postcode lottery. It is very common for an ultrasound scan to be undertaken at TWOC appointment but not universal.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2022 at 15:03

Thanks Chris. Yes happy to wait to be honest….rather be safe than sorry and make sure everything has healed ok. Going to stay overnight after TWOC, it’s not ideal having to come back and travel home but hopefully I’ll prepare well and we’ll be ok. 

Heading home tomorrow so he wants to do a last walk along the Thames today….he really does think he can do more than he should so just having to reign him in 😂

User
Posted 06 Jan 2022 at 16:38

 

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

 

User
Posted 07 Jan 2022 at 17:14

I intend to keep drinking 3 litres of water a day  for the foreseeable future and actually started doing so at the time (last June) that I was officially diagnosed with prostate cancer. It does not have to be just water, but can include low-fat milk and unsweetened drinks.  Most people do not drink enough fluids,  which are needed to flush the toxins out of the system.

 

Ivan

User
Posted 09 Jan 2022 at 00:23

Originally Posted by: Online Community Member

My work involved stopping in hotels a couple of nights a week. I was paranoid about wetting the bed. I put a pad in my snug pants, wore a pair of tena pants over the top had one of the hospital type water proof squares on the bed and also slept on a towel. As it turned out I never leaked.

I assume you can still book trains seats to be near a toilet. Don't forget some nappy sacks for the wet pads]

 

This is all really great advice Chris thank you. Will definitely do all of this as I was worried about the hotel bed 🤦🏻‍♀️ I took everything to London with me in preparation as it thought catheter would be coming out…but with us getting the train this time I will be restricted with how much luggage! I got him loads of pads and pants and also puppy pads which someone else advised so will take them with us.

I did request a seat near toilets, but I always request him a forward facing seat which he never gets so won’t hold my breath ha! 

User
Posted 09 Jan 2022 at 00:36
You click on quote and then when the section appears in the text box, you move your cursor to the line below the final "quote" wording so that your own words show after the italics.

I.e., when quoting Chris, his last word was 'pads' snd in your text box, there would have appeared some brackets and quote after the word 'pads'. You needed to start typing after that.

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

User
Posted 20 Jan 2022 at 13:48

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

User
Posted 20 Jan 2022 at 15:03

Great news Elaine onwards and upwards 👍

User
Posted 20 Jan 2022 at 17:19

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

User
Posted 22 Jan 2022 at 16:21
Below was posted by Lyn on a different thread, replying to a question I asked with regards to lymph node spread. I have copied it onto my thread so I will always be able to find it.


Posted 22 Jan 2022 at 14:49

 

I think it is because we imagine the cancer growing inside the prostate and then bursting out of the covering to then climb across to a lymph node or a bone. It doesn't work like that.

 

The cancer can burst out of the gland and invade other things close by, such as the bladder, bowel or pelvic muscles. Or it can stay in the prostate and look quite small but blood and lymphatic fluid both travel through the prostate and it is possible for the flowing liquid to pick up cancer cells and then carry them away. If the lymphatic fluid picks up some cancer cells, these will usually be collected in the nearest lymph nodes (which act like a sieve, I suppose) - this may be what has happened in your case. Or the nearest lymph nodes can't collect it all and the cancer cells are then travelling all around the body - this is N1 in a diagnostic report and the genie is out of the bottle, the whole lymphatic system cannot be treated curatively. Or the lymph nodes do their job well but the blood carries cancer cells around the body, including to the bone marrow where cells settle and then metastasise. Again, the genie is out of the bottle and generally speaking, although one or two bone mets can be zapped, there is a high chance that the cancer cells are already settled in bone marrow elsewhere around the body.

 

What is interesting is that for most men with PCa, the prostate cancer cells travel around the blood or lymphatic system but are never able to take hold / metastasise. I think PCUK was funding some research at one point to try to identify why some bodies can clean up the travelling cells and some can't.

 

I don't suppose there is any way for you or the surgeon to know whether those cells had all been caught in the sieve of the nearest lymph node (in which case, he should have a lovely undetectable PSA for the rest of his life) or whether the cancer was already settling in other nodes around his body. It is a waiting game and, if you are lucky, it will be a very long wait - my dad had his recurrence 13 years post-op although obviously those tiny micromets had been sitting there all that time. 

User
Posted 21 Feb 2022 at 15:41

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

User
Posted 30 Mar 2022 at 15:11
I definitely don’t feel right in the mornings. The hot flushes start after my first wee ( 6am ) and when I get back in bed can be very shaky and have heart palpitations for sure. Normally the flushes don’t bother me once I’m awake and on my feet. HT can cause heart fluttering , but I too have had clear ECG’s over the last year. Not sure about Vit D although the cod liver oil I take daily has the full dose of D

If life gives you lemons , then make lemonade

User
Posted 11 Apr 2022 at 00:27

Originally Posted by: Online Community Member

Hi Elaine

My OH has experienced this on ocassion, more recently since the chemotherapy. He felt very faint and weak too. It may sound daft but we put it down to a fluctuation in blood sugars, electrolytes. My sister is a nurse and suggested having a fizzy drink on hand. Oh said it was amazing how it sorted things. X

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

User
Posted 19 May 2022 at 18:22

Just an update. 3 month check.
PSA <0.025
Testosterone 2.8

Really happy T level has increased slightly but PSA has remained undetectable. Early days and we’ll know more towards the end of the year….but really happy with this news.

Seriously can’t believe where we are compared with 10 months ago. I really hope for anyone just starting their journey they can take some comfort from our story so far. With such a bad original diagnosis to where we have got to. I never like to get too far ahead of myself but we are just so grateful for getting to this point.

Thanks again everyone on here for all your support, it really has been incredible.

Wishing everyone all the very best xx

Edited by member 19 May 2022 at 18:22  | Reason: Not specified

User
Posted 19 May 2022 at 19:42

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

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User
Posted 01 Sep 2021 at 17:09

Forgot to mention that my husband has no symptoms either. He started to have PSA tests in 2019 and this was where it was picked up

User
Posted 01 Sep 2021 at 19:40

Hi Elaine,

I think the GP was right not to be over concerned (but only with hindsight may he be proved wrong) like most people of your husbands age he has prostate cancer, it is just a question of how serious it is. The T3a N1 M1b G4+3 doesn't look good on paper, but as you have said it is really a case of how reliable the N1 and the M1b scores are which will make the difference. If the PSMA Pet scan was done after hormone treatment was started I don't think it will be a reliable scan, the HT will be suppressing the cancer and even if it is there it may not show up. The Docataxel and Enzalutamide does suggest the onco thinks this is advanced and needs treating aggressively.

I was on HT for two years, it was not a problem, but I would not have wanted to be on it for the rest of my life. I would definitely want to be sure I was not being overtreated.

Changes to lifestyle and diet are unlikely to make any difference to this cancer. So if he likes doughnuts I would tell him to keep eating them, because he may as well enjoy life.

 

 

Dave

User
Posted 01 Sep 2021 at 20:06

Thank you for your response Dave I really appreciate it. It has often felt very lonely going through all of this until I started to look on this forum.

If we get good news on Friday I guess that opens up more treatment options to us. I see what your saying with the hormone treatment…is it likely to have suppressed it that quickly given he’s not had the hormones for very long? The second opinion that we had looking at the scans (mri, ct & bone) before hormone treatment said it wasn’t bone mets and seemed fairly confident but our local hospitals and oncologist seem to have just accepted that it is. We did see one local urologist who said it seemed unusual looking at my husbands stats that it had spread to the bone. All bloods clear too so that surprised me. It’s such a minefield and so hard getting our heads around everything.

I think our reasoning with diet and exercise plans is just to give him the best chances with any treatment he might have in the future. Just want us both as strong as possible physically and mentally to deal with it all.

Hope your journey is going well Dave and that you are feeling good. 

Thanks again 

 

User
Posted 01 Sep 2021 at 20:21
I can understand why the news that there may be no bone mets has made you feel more optimistic and even questioned whether the treatment plan could change but, in reality, the N1 is just as worrying as the M1 so unless the PSMA scan indicates that both the N1 and the M1 are errors, you will stay on the current pathway. The reading of scans is often subjective but his data has probably been looked at by a multi-disciplinary team (MDT) so their view (T3a N1 M1b) may be more reliable than one other consultant's interpretation. It will be worth you asking the local team whether the T3N1M1 was indeed produced by a MDT.

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.

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

User
Posted 01 Sep 2021 at 21:06

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. 

Dave

User
Posted 01 Sep 2021 at 22:39

Hi Lyn,

Thank you for your response.

Yes I guess we’re hoping for N1 and M1 to be taken away. When we got the diagnosis for the N1 they just said one of the nodes looked a little bigger than you might expect, but if he didn’t have the cancer that had spread to the bone then they wouldn’t have thought anything of it…maybe we’re clutching at straws….we’re definitely living in hope, but guess what will be will be.

It would appear that both opinions have been made by MDT’s….I know our local one was and then when we’ve spoken to the London based doctor he has reviewed it all with a team there.

Slightly worried about the hormones affecting the results now. Up to the PSMA pet scan he has been on bicalutamide 3 weeks and had prostap 1 week earlier.

I mentioned the enzalutimide to onco and was told this was definitely an option, although it looks like we will have to have both eventually so just which one we would prefer first. 

User
Posted 01 Sep 2021 at 22:51

Hi Dave,

Three weeks he has been on bicalutamide and one week since first prostap injection. I will definitely mention this though when we get the results. I’m thinking if whatever has been seen isn’t mets in the bone then it would still be there on the Pet scan?? ie some sort of arthritis 

Yes think his 2019 psa was just slightly over 4. They are surprised by mets with all his figures but like you say nothing can be certain and I can see every case seems to be very different.

You are right, my husband has always been fussy with food so it’s been a challenge to change his diet as much as we have. I do just tell him though if you really don’t like something don’t have it and we definitely do have treat days (probably too many ha)! One thing that has been good is that he’s often suffered with heartburn that can keep him awake, he doesn’t get that at all anymore.

Great to hear things are going well for you and long may it continue. I think the uncertainty is what has the biggest impact mentally….the more we find out the easier it seems to have a positive approach regardless of the diagnosis.

Take care 

User
Posted 01 Sep 2021 at 23:25
Just read your bio Dave. Absolutely love it. So encouraging to read a story like yours. Wishing you well
User
Posted 02 Sep 2021 at 09:33

Just for anyone who has sent me a private message. I’m not being ignorant and not replying, but it tells me I can’t reply as this is my first post and I haven’t been involved in enough conversations yet. As soon as I’m able to reply I will do. Thanks

User
Posted 02 Sep 2021 at 18:15

Hi Elaine, I'm glad you're finding your feet. I hope the scan results give you some certainty. 

Dave

User
Posted 03 Sep 2021 at 09:08

So definitely some good news.

We've had the results of the PSMA pet scan and it has confirmed no bone mets. I asked whether the hormones could have made this dormant and was told no as he hadn’t been on them long enough.

There is definitely 1 node involvement (9mm) possibly 2 so HT hadn’t suppressed this.

I’ve assumed this has now downgraded us to locally advanced PCa instead of advanced….is this the case?

Now we have to think about treatment options. We could go for surgery but would need RT….would this be classed as SRT so less fractions needed?? Or is this not the case?

Really undecided, my OH is definitely tempted by the surgery route and with no node involved it would have been an easy (well easier) decision….now unsure. 

Any advice welcome. Thank you

 

 

User
Posted 03 Sep 2021 at 17:22

Well that is good news.

Now to consider what treatment to have? Well the first thing is he is currently on HT and that will hold things at bay whilst you decide.

I will start off with the least aggressive and work up to the most aggressive. I'll say what my opinions are but do bare in mind I am only an amateur with my own biases and no experience or training in anything medical.

Active Surveillance or Watchful waiting:

With some G4 present and already evidence of spread I think that within five years with no treatment he would be in fairly bad health if not dead. If he were 85 this might be a good option, he would probably die of something else before the cancer killed him and any treatment would reduce the quality of life which he has left.

Hormone Therapy:

This is the current treatment plan, it will hold the cancer at bay for a few years, it will not kill the cancer, the cancer will become immune to HT and may become active again. This could be in as little as two years or as much as fifteen years. Chemo would almost certainly be required at some point

Brachytherapy HDR, LDR:

As there is some evidence of spread either of these would be unlikely to kill all the cancer. In combination with EBRT they may be useful.

EBRT:

If anything has a chance of killing all the cancer this is it. It would have to be aimed not just at the prostate but the whole pelvis area. It would be hitting the bladder and bowel and causing some collateral damage. There is evidence of cancer in near by lymph nodes, if it has spread beyond the pelvis then there may be micro-mets in other parts of the body, and they will not be killed so he will not be cured and will end up on HT or Chemo etc.

Surgery:

This alone will not cure him, as the cancer has spread. It would have to be accompanied by EBRT (in this case it is called Adjuvant RT as it is planned to be given. SRT is Salvage RT as it was not planned for). This has the potential for incontinence, ED, and other complications and pain from surgery. Over half the people on here who have had surgery I would say are happy with their surgery, some have some complaints, but this forum is very much biased towards people with problems. 40,000 men in the UK are diagnosed with prostate cancer and only about 100 are on this forum so we have to assume that 39,900 are having a great time with no complaints with whatever treatment or lack of it that they have had.

Plenty of people would say don't have Surgery if you will have to have EBRT anyway as there is no point in getting two sets of side effects, when either treatment is just as effective in treating organ confined cancer. Others would say chuck everything at the cancer and hope to kill it with everything.

If I were in your position I would be very interested in pursuing the EBRT, but if the onco said, "Look it has clearly spread beyond the prostate, and it is almost certainly in other parts of his body outside of the pelvis, so EBRT will not eradicate the cancer" then I would probably accept that a lifetime of HT was the only option.

 

Dave

User
Posted 03 Sep 2021 at 17:54
Have they told you that surgery and other radical treatments are now an option? If he is still N1, he has advanced prostate cancer.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2021 at 09:09

Thanks for all the info Dave. We really need to sit and look at all the options and just get as much info as possible. Will update you on what we decide.

User
Posted 04 Sep 2021 at 09:16

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.

 

User
Posted 04 Sep 2021 at 12:13

Hi Elaine,

I wasn't sure of the answer to the question of whether they reduce radiation if there has been a prostatectomy.

I did a bit if research on Google. I found this paper

https://www.auanet.org/guidelines/guidelines/prostate-cancer-adjuvant-and-salvage-radiotherapy-guideline

I think the source is credible, though the Internet is not always trustworthy.

Because I studied physics, and because I run a small business and have to read tax laws. I am not intimidated by a large scientific paper. I just skim read it and about a third of the way through, I found that ART and SRT tend to be given at about 60Gy whereas RT as a primary treatment tends to be given at about 74Gy.

So it would seem that they tailor the RT dose to the requirements of the patient, but it is not massively reduced from the maximum dose.

The word "cure" when referring to prostate cancer is very contentious. The words curable and curative intent, are far more acceptable. A man may be cured of prostate cancer but he will never know that for sure. Living with uncertainty is something you have always done, this is just another uncertainty.

I do try and steer people away from an irrational desire for surgery, by that I don't mean surgery is wrong, it is right most of the time. But sometimes people want it for emotional rather than rational reasons. 

Originally Posted by: Online Community Member

The RP vs RT debate is very difficult to resolve. Some people are not given the choice because of the nature of their particular disease. But if you are given the choice it is because the medics thinks each one has an equal chance of success. 

If you went down the pub on a karaoke night, grabbed the microphone in the middle of "sweet Caroline" and said, "I've got cancer, should I cut it out or blast it with x rays? show of hands please". The replies would be "get off", "come on England", but if you did get the show of hands 80% would be "cut it out". In fact after a few jars some of the patrons may offer to do it there and then using nothing more than a knife, fork and dessert spoon. 

What I'm trying to say is there is a very strong irrational bias towards the more aggressive treatment, try and ignore that and decide what is best for you. 

After the procedure regret nothing. If it fails, then the other one probably would have as well, if you have dreadful side effects then you may have got dreadful side effects from the other one as well. 

Good luck with your decision. If all goes well don't thank me for my advise, because the corollary to that is, that I get the blame if it goes wrong, and I definitely don't want that. Listen to the oncologists, they may even think HT and chemo are still the best option. They get it right more often than a random bloke on the Internet. 

 

Dave

User
Posted 04 Sep 2021 at 14:49
Yes, my apologies - N1 is classed as locally advanced. The debate about whether it is worth having surgery is an interesting one as with at least one positive node (and 8mm is rather big) and possibly two, there is a risk that the cancer is more widespread in the lymphatic system - they can remove the prostate and the nodes that cause concern, only for you to find that the cancer remains active. I think if it was my husband, I would want the urologist to explain why he believes that only those two nodes are affected, how confident he is that it isn't already in distant nodes. I would also want to talk to the oncologist about brachytherapy in combination with external beam RT if not already done so.

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.

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

User
Posted 04 Sep 2021 at 14:50
Also, has the urologist said whether the surgery would be nerve-sparing or non-nerve sparing? That makes a significant difference to the likelihood of permanent side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Sep 2021 at 23:36

Hi Dave & Lyn,

 

Thank you so much for your responses and for all the information, it is greatly appreciated.

 

I will ask our consultant if he thinks there’s a possibility of distant nodes. With the 4 scans he has had already, they have pretty much covered his whole body so was hopeful that anything significant would have already been found. Consultant did say after surgery to remove the prostate and nodes there’s still likely to be microscopic cancer that won’t be picked up on scans, hence the ART.

 

I think the main reason my OH is leaning towards surgery is because of our consultant. Throughout this process so far we haven’t found anyone who we have felt full confidence or really happy with or who fills both of us with so much positivity until we met him. So right or wrong we feel that we want him to be involved in this journey with us. I have to say that he has in no way influenced us that way, and has said that although there may be benefit from surgery and RT compared to RT alone it would only be slight and would possibly endure side effects from both. I think there is also the psychological aspect of removing the bulk of the cancer, and the information from the Atlanta trial suggesting there has been some evidence that it might be beneficial to advanced cancer patients to remove the prostate, and the fact cancer in the prostate could be sending growth signals to other parts of the body (I know this is a trial and nothing proven)

 

I do wonder with ART….because RT is generally targeted, if the prostate and node was removed where would they target? 

 

We’re still reading through everything but hoping to have all our questions together really soon and a decision early this week.

With regards to nerve sparing, it’s certainly something we will look into…just a bit worried more cancer could be left behind by trying to do so. Of course it would be really great and is on our list of concerns but not right at the top.

 

Thanks again for all the advice 

User
Posted 05 Sep 2021 at 23:44

I agree Dave and we have talked about the fact that when the decision is made…no regrets and no looking back. We do what we think is right for us (him) and be confident in that.

User
Posted 06 Sep 2021 at 06:53
ART targets the gap where the prostate was + local lymph nodes if the Onco is concerned about them.

User
Posted 06 Sep 2021 at 18:26

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. 

Dave

User
Posted 06 Sep 2021 at 19:40

Hi Dave,

Yes I really appreciate all the advice thank you.

The nerve sparing is definitely something we will highly consider but if it’s at the risk of them leaving more cancer then we just don’t think it’s worth the risk….I do understand what you are saying though.

This guy is not the first urologist/surgeon we have seen and I can assure you they really are not all happy chappys and I really feel it has a detrimental affect on my OH, so when you have someone who it feels is on your side it makes such a difference. He does come with a fabulous reputation too but I know everyone is different and will have different side effects and results.

We are still undecided, it’s driving us a bit crazy at the moment. Still got a few people we need to speak to first but hopefully decision will be made soon.

I see you’re from Manchester Dave. Do you still live in the area? We are also Manchester 

User
Posted 06 Sep 2021 at 21:17

The information posted by Dave and Lynn is spot on and really helped me make my decision to take the hormone therapy and radiotherapy route which up to now has gone really well  hopefully your husbands treatment goes well to good luck and stay positive gaz

User
Posted 06 Sep 2021 at 21:28

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. 

Dave

User
Posted 12 Sep 2021 at 12:12

Hi Dave,

Thanks again to you and everyone for all your help of info.

We have finally made the decision to go for surgery, not sure when that will happen yet but meeting up next week to discuss the finer details. We feel a bit relieved just having made the decision. Think it will be 6 to 12 months after op before RT.

Having a few days away next week too, can’t wait for the break!

We’re about 4 miles out of the centre, close to Oldham & Tameside borders so probably around 10 miles from you.

 

 

 

User
Posted 12 Sep 2021 at 17:13

Yes, once you have made a decision it is such a relief. Turning that M1 in to an M0 was the best thing you could do. It has taken your OH from guaranteed HT for the rest of his life, to treatment with curative intent. A cure is always a tall order, but postponing the disease by fifteen years is just as good in a 73 year old, and even five years is not a bad result. So let's hope things all go well. The Christie have RT machines set up in Oldham, so you won't have far to travel, it's not so easy for people who need to make 100 mile plus round trips for 20 treatments.

Have a nice few days away. 

Dave

User
Posted 12 Sep 2021 at 17:41

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?

 

User
Posted 12 Sep 2021 at 17:43

And yes we’re definitely lucky have Christie’s on our doorstep, it must be so difficult having to travel so far for treatment over a long period of time.

Thank you…it will be nice to get away from everything 

User
Posted 23 Nov 2021 at 19:12

Hello,

I get a bit confused with PSA scores and what they mean. Could anyone please explain 0.083 to me? I often see that <0.1 is undetectable….and although this number is I don’t think it is undetectable if that makes sense 🤷🏻‍♀️? Sorry if this is a really stupid question.

User
Posted 23 Nov 2021 at 20:33

That is a good score. The definition of undetectable is confusing. Strictly speaking a number with a < in front means below the limit of the machine used to to test it. So if a hospital bought a really old testing machine which couldn't measure PSA below 10 even your husband's original PSA of 8.2 would have been reported as <10 and hence on that machine it would have been classed as undetectable. Of course such a machine would be useless and whoever bought it should be sacked. About 20 years ago test machines were able to measure down to 0.1 so anything below that was <0.1 so undetectable. Newer machines were introduced capable of measuring down to 0.03 so on those machines undetectable was defined as <0.03  these machines can be described as ultrasensitive. 

The problem with ultrasensitive PSA tests is that they pick up tiny amounts of PSA created by adrenal glands so even women would have a detectable PSA. So now some hospitals have gone back to reporting anything below 0.1 as <0.1 even if they know exactly what the number is, to avoid stressing the patients. So your OH's PSA at 0.083 is delightfully low, and if it had been reported as <0.1 you would have been very happy. At his next test it may be 0.085 and that may cause some anxiety, but again if it were reported as <0.1 you would be happy.

All of my PSA tests whilst on HT were reported as <0.1 . I presume the hospital I was under had modern machines capable of reporting to two or three decimal places but they chose not to, as there is no point in having patients worry about an increase of 0.001 on a test.

The only time reporting to more accuracy than 0.1 may be relevant is for someone who has had a prostatectomy. A change from 0.03 to 0.08 might be a cause for concern. But for someone with a prostate on HT anything below 0.5 is good, particularly if it is falling staying the same or only rising slowly. For someone post RT and no longer on HT a figure under 2.1 is good again as long as it isn't rising rapidly.

So your OH's PSA of 0.083 is to all intents and purposes undetectable and if in three months time he is still on HT and it is still <0.1 it is still to all intents and purposes undetectable. All undetectable results should be celebrated so get down the Christmas markets and have a mulled wine.

 

Dave

User
Posted 23 Nov 2021 at 20:46

Thanks so much Dave for your detailed explanation, really helpful. 
Rob had blood tests for some other things but they reported PSA aswell on the report I received. I was a bit surprised it being that low to be honest. He had his 2nd prostap 3 injection today. 
His RARP is booked for just before Christmas so we better hurry with those mulled wines 😂 nerve wracking time of course but waited a fairly long time for this.

Hope you are doing well Dave and thanks again.

User
Posted 23 Nov 2021 at 21:04
Don't stress about undetectable PSA Elaine, it is irrelevant unless the man has had his prostate removed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Nov 2021 at 21:37

Thanks for your response Lyn. No for once I’m not stressing ha! I just wasn’t sure if I understood the numbers properly. We weren’t really expecting a psa result until after protatectomy.

Could I please ask if you know anything about CRP levels and if HT can affect this figure? 

User
Posted 23 Nov 2021 at 23:11
CRP is linked to so many things - high levels can be down to infection, liver damage, arthritis, rheumatism, etc. People who have had covid can have high CRP readings for a while, as can someone who has had a heart attack.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Nov 2021 at 23:25
Thanks Lyn.

I’ve emailed the gp surgery for more info.

Rob’s CRP was 2.6 in august and now 17.5….but it says satisfactory result next to it even though it is recommended to be <5

He’s never had any health worries before being diagnosed (which we are thankful for) so everything seems scary at the mo

User
Posted 24 Nov 2021 at 08:53

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

User
Posted 24 Nov 2021 at 09:50
I’ll take a look at that, thanks Jonathan.

And yes fingers crossed it’s the start of things coming good 🤞🏼

User
Posted 24 Nov 2021 at 19:31

Getting a referal "out of area" is something the specialists can do.  I had the same problem, funding is the issue. NHS England agreed to pay and everything went ahead smoothly. My treatment was Brachytherapy and was not available in my area. Get cracking with those emails!  John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01

User
Posted 25 Nov 2021 at 10:06
Hi John,

I did eventually get the referral after a lot of hard work (which it turned out wasn’t needed…just need to speak to the right person 🙄)

We were told that an NHS referral wouldn’t make too much difference to the date, however now it seems that isn’t the case so he’s having the op done private again now!

Pleased with the PSA. Although it wasn’t the plan to have a test yet it has definitely given me reassurance that atleast the HT is working.

Best wishes

Elaine

User
Posted 20 Dec 2021 at 22:48

Well the day has finally come and my OH will be having his RALP tomorrow. Would just like to say a huge thanks to everyone on this forum for the help in getting to this point. I feel like we’re pretty organised as I’ve gone through the check lists on other posts that have been really useful. I’m sure I would have felt a bit lost at this point without all of the help. No doubt I’ll be back on this week asking for everyone’s help again 🤦🏻‍♀️ Xx

User
Posted 21 Dec 2021 at 00:40

Great, it'll be a relief to get that behind you.

Dave

User
Posted 21 Dec 2021 at 01:18

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 

User
Posted 21 Dec 2021 at 07:30

Wishing you and the OH all the best ! 

User
Posted 23 Dec 2021 at 15:22

I know I posted about this on someone else post but wanted to update my thread.

Rob had his RALP 21/12/21 been told all went well, had to have bladder neck reconstruction. He stayed in for 2 nights and I’ve just picked him up and brought him back to our rented apartment near the hospital for the next 2 weeks.

Since coming back he is feeling like he wants to wee even though he has the catheter in….can anyone tell me if this is normal and if they have felt like this? Thank you 

User
Posted 23 Dec 2021 at 15:31

Hello Elaine

 

Re your question, having  also had RALP surgery on 21/12 I can confirm that you have the feeling that you want to wee even though you have the catheter in. It is a strange sensation but you soon get use to it. Well, I have anyway

User
Posted 23 Dec 2021 at 15:44

Thank you so much for that information, I will let him know. His bag is still quite red aswell not sure if that is to be expected at the moment.

Hope you’re feeling well after your surgery and wish you a very speedy and full recovery x

User
Posted 23 Dec 2021 at 15:56

I think the more water you drink the clearer the wee in the bag is. My bag was quite clear yesterday because I was drinking copious amounts of water but because today I have been taking less water my bag is more reddish in colour. The nurse told me to drink as much water as I could as that helped flush "things" through the system.

 

Yes, I am feeling as well as can be expected and have updated my thread to record the present state of play. My  felicitations to your husband and at least he and I are on the other side of the operation and should soon start feeling better.

User
Posted 23 Dec 2021 at 16:14

Thanks so much. He says he’s been drinking a lot but of course he’s not had me there to monitor him 😂😂 hopefully it will be clear by tomorrow.

He’s still waiting for his first bowel movement, so think he will feel better after that.

Glad things are ok. I will look properly at your thread later when I get chance. Thanks again for the advice, it’s really helpful and much appreciated x

 
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