Hello Vannessag,
Sorry to read about your situation. It is true that urine infections, recent sexual activity, or cycling can all cause raised PSA levels. But, given the prostate “didn’t feel great” it’s best to get things checked now.
If he doesn’t have prostate cancer great but if he does treating as early as possible is crucial.
The waiting is very difficult but it’s best to find out one way or the other. Ignoring it isn’t a good idea.
Please let us know how he gets on and come back with any further questions.
Also if there is a Maggie’s centre within a reasonable travelling time you could make an appointment to speak to someone there, they are there for cancer patients, spouses/partners, family and friends.
Maggie’s has been a great resource for me when I needed it, they are very knowledgeable and caring.
|
User
Dont forget the PCUK specialist nurses
08000748383
they are fantastic about all things before and after diagnosis
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Back ache is a common symptom of kidney stones. His PSA is high but we have had men heee with PSA of 70-80 who got the all clear; 20 doesn't tell you anything except that it needs checking out. The kidney stone wouldn't cause the PSA rise but if the kidney stone is affecting the efficiency of his urinary tract, an undiagnosed UTI could push his PSA up.
Edited by member 23 Jan 2022 at 01:45
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I have a feeling the biopsy will be booked if it is required once the MRI is analysed.
Have you been to a Maggie’s centre or phoned the PCUK nurses?
I think you would find that helpful.
The waiting is awful and the staff at PCUK or Maggie’s will help put things into some kind of order in yiur mind.
Take care.
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User
Hi Venessa
There is not much more I can say other than my wife was much the same as you until I had my diagnosis and we were able to talk to a McMillan nurse and have everything explained she sill worries a bit but knows that’s it is curable
The most annoying thing is her asking me very 5 minutes if I’m OK
Bob
User
Just wanted to wish you all the best for Friday. Take care.
Janet
User
There are no known cases of needle tracking (cancer spread through the spaces where biopsies are taken) with TRUS biopsy. There are a handful of reported cases with template biopsy but the risk is very small.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
This is interesting on the subject of needle tracking by the Sperling Prostate Center (who incidentally are often referred to for the (Focal
Ablation Treatment (FLA) they administer. The risk of biopsy needle tracking for PCa is minuscule, although increased for some other cancers.
https://sperlingprostatecenter.com/truth-biopsy-track-seeding/
Barry |
User
Cancer spreads to the bones through the bloodstream.
You can have mets to the bone but not the nodes or organs, spread to the nodes but nowhere else, mets to soft organs without spread to any other place, or mets to lymph/bone but still contained in the gland.
Edited by member 31 Dec 2018 at 17:53
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Glad to hear things have gone well. Long may that be the case.
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User
User
Great to see your update 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
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.
Edited by member 22 Jan 2022 at 14:54
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
There are many HTs for breast cancer but the most common is Tamoxifen; women may also have Prostap or Zoladex so pretty much the same side effects that men have.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Vanessag
I can relate to how you're feeling. My husband, 67, had a PSA of 30 and he's had an MRI followed by a biopsy, we now await the results.
It is really hard all this waiting, many on here say it's the worst part. As you will see, a lot of men on here live good, productive and happy lives no matter the outcome and this I find comforting. This is a supportive place filled with quite knowledgeable people.
I wish you and your husband all the best.
Janet
User
Hello Vannessag,
Sorry to read about your situation. It is true that urine infections, recent sexual activity, or cycling can all cause raised PSA levels. But, given the prostate “didn’t feel great” it’s best to get things checked now.
If he doesn’t have prostate cancer great but if he does treating as early as possible is crucial.
The waiting is very difficult but it’s best to find out one way or the other. Ignoring it isn’t a good idea.
Please let us know how he gets on and come back with any further questions.
Also if there is a Maggie’s centre within a reasonable travelling time you could make an appointment to speak to someone there, they are there for cancer patients, spouses/partners, family and friends.
Maggie’s has been a great resource for me when I needed it, they are very knowledgeable and caring.
|
User
Dont forget the PCUK specialist nurses
08000748383
they are fantastic about all things before and after diagnosis
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Back ache is a common symptom of kidney stones. His PSA is high but we have had men heee with PSA of 70-80 who got the all clear; 20 doesn't tell you anything except that it needs checking out. The kidney stone wouldn't cause the PSA rise but if the kidney stone is affecting the efficiency of his urinary tract, an undiagnosed UTI could push his PSA up.
Edited by member 23 Jan 2022 at 01:45
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thankyou everyone for your replies. I got his PSA wrong it is 21.3 which is even worse. Reading previous posts and it seems everyone has am MRI and a biopsy, our consultant hasn't mentioned a biopsy yet, should I be asking for that to get a date in the diary?
The waiting as everyone says is destroying me (my Husband seems to be dealing with it better). I have a stash of sertraline in the cupboard that I was prescribed but never took, so have decided to take them (I shall make an appointment with the GP at some point to discuss this). Am getting paranoid about everything my Husband does, every little cough or expression or falling asleep in the chair I find myself watching and analysing, have even been listening to him weeing and trying to figure out if it is normal. It really is the worse torture and I do have a feeling of dread that I just can't shake off
User
I have a feeling the biopsy will be booked if it is required once the MRI is analysed.
Have you been to a Maggie’s centre or phoned the PCUK nurses?
I think you would find that helpful.
The waiting is awful and the staff at PCUK or Maggie’s will help put things into some kind of order in yiur mind.
Take care.
|
User
Hi Vanessa,
As others have said, the waiting is the worst part. You'll feel better when you know the results, no matter what they are, because that takes away the uncertainty.
If I may inject a note of optimism, a PSA of 20 may very well indicate localised prostate cancer, but it's not a death sentence. It's a curable condition, and the overwhelming majority of men diagnosed with it go on to live normal lives after treatment. So if (as I strongly suspect it will) the result does come back positive, don't worry about it. It's a medical condition that can be and will be treated and then you can get on with your lives.
All the best,
Chris
User
Hi Venessa
There is not much more I can say other than my wife was much the same as you until I had my diagnosis and we were able to talk to a McMillan nurse and have everything explained she sill worries a bit but knows that’s it is curable
The most annoying thing is her asking me very 5 minutes if I’m OK
Bob
User
Thankyou everyone for your help and advice. I have spoken to the consultants secretary and she has made us an appointment for this Friday morning (MRI being done this Wednesday) and we can discuss the results and what the plan of action is needed then.
I have also spoken to the Macmillan nurses, who were very helpful and helped to reassure me and gave me some good advice.
Thanks again
User
Good to hear that you now have an appointment. With a PSA of 20, regardless of what the MRI shows, the next step will probably be a biopsy. Unfortunately it's not terribly uncommon for prostate cancer not to show up on an MRI, and a biopsy is the only way to know whether or not cancer is present.
If a biopsy is arranged, don't worry about it! It's a minor, routine procedure. The worst bit about it is the 2-week wait for the results, unfortunately.
All the best,
Chris
Edited by member 17 Dec 2018 at 17:19
| Reason: Not specified
User
Chris
I recognise you are trying to give some support but you are not a doctor. The poster is reporting her husbands PSA as >20 and you are telling her this is a curable condition with little knowledge of the specific case.
From my perspective this is bang out of order, I was diagnosed in August this year with incurable PCa with bone mets on a PSA of less than 14, how can you make a rudimentary "diagnosis" on Vanessa's husbands prognosis with no medical knowledge of the case?
It's not helpful or supportive.
User
Thankyou all for your help, but I think maybe I should not read anymore comments until I have spoken to the consultant on Friday.
User
Just wanted to wish you all the best for Friday. Take care.
Janet
User
Originally Posted by: Online Community MemberChris
I recognise you are trying to give some support but you are not a doctor. The poster is reporting her husbands PSA as >20 and you are telling her this is a curable condition with little knowledge of the specific case.
No, I did not. I said that:
1. A PSA of 20 may very well indicate localised prostate cancer.
2. Localised prostate cancer is a curable condition.
Both of those statements are absolutely true.
The appropriate tests will of course reveal what Vanessa's husband's diagnosis actually is, but there really is no reason for assuming "doom and gloom" at this stage in the proceedings, and every cause for optimism.
Regards,
Chris
Edited by member 18 Dec 2018 at 10:17
| Reason: Not specified
User
Hi Everyone
Just to update you all. Husband had mpMRI on Wednesday and we met with the consultant this morning. There is an abnormality in the prostate (as we expected) however it hasn't broken out. Next step is a CT on his kidneys (suspected stone), and a biopsy booked in on 7th January (fusion biopsy MRI?). Also a bone scan is being arranged. The waiting has been torture (even though things are being done very quickly), trying to carry on as normal with 2 teenagers has been very very hard, however we are encouraged by this bit of news and feeling a little more positive.
Vx
User
Thanks for the update. It’s good that the abnormality seen on MRI hasn’t broken out.
Best wishes, Ido4
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User
Reasonable news, Vanessa, and the tests are entirely as one would expect. It's a template biopsy under general anaesthetic that your husband is having?
All the best,
Chris
User
Hi
He said it wasn't a template biopsy, it is a fusion guided biopsy under GA
Vx
User
Thanks. A fusion biopsy and a template biopsy are essentially the same procedure in terms of the physical process of taking the samples, the only difference being that in a template biopsy samples are taken using a rectangular grid of holes (the “template”), while in a fusion or targeted biopsy sampling is guided using the results of the MRI scan.
Very best of luck to you,
Chris
User
Thankyou....Had a copy letter from consultant to his GP today, stating a Pi-Rad of 2/3 and 4, and that there will be a Trus fusion biopsy.
The one thing we are worried about is at what stage could it spread from being localised to breaking out?
User
Looks like he is getting the best treatment with ‘The Full Monty’ of tests, with a kidney stone as a bonus!
Most prostate cancers are usually very slow growing, so don’t worry too much about the capsule being breached in the next few weeks or months. In any case they can’t really tell until the prostate is biopsied after surgical removal, although they have more idea with a template biopsy as to the exact location of the lesion. Mine was thought to be contained following a template biopsy with 42 cores sampled, in the event it was not. Am I bovvered? No.
If and when cancer is confirmed following the biopsy, you will have plenty of time to consider options for treatment (if any at all), and make sure you obtain second opinions whichever treatment plan you go for.
Enjoy your Christmas.
Cheers, John.
Edited by member 23 Dec 2018 at 05:29
| Reason: Not specified
User
Hi Everyone
I'm just rereading the consultant letter and am unclear about something and my interpretation of what the consultant has said...
'MRI has shown some PIRADS 2/3 and 4 lesions within the prostate gland."
Now does that mean 4 lesions that are 2/3, or lesions that are 2/3 and 4?
Thankyou for all your support x
User
Originally Posted by: Online Community MemberHi Everyone
I'm just rereading the consultant letter and am unclear about something and my interpretation of what the consultant has said...
'MRI has shown some PIRADS 2/3 and 4 lesions within the prostate gland."
Now does that mean 4 lesions that are 2/3, or lesions that are 2/3 and 4?
Thankyou for all your support x
Hmm .....All a bit ambiguous innit!
My interpretation would be lesions that are PIRADS 2, 3 and 4....
Otherwise the consultant would have written it as you describe.... 4 lesions that indicate PIRADS 2/3 ?
Which perhaps is why they are going ahead with a Biopsy? I may well be wrong ( I hope I am )
Others may have a different take on it...
Best Wishes
Luther
User
Hi Everyone, another question (and it may sound really stupid).......when they do the biopsy could that disturb the cancerous cells and allow them to spread from the prostate? All sorts of questions going through our heads......
User
There are no known cases of needle tracking (cancer spread through the spaces where biopsies are taken) with TRUS biopsy. There are a handful of reported cases with template biopsy but the risk is very small.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
This is interesting on the subject of needle tracking by the Sperling Prostate Center (who incidentally are often referred to for the (Focal
Ablation Treatment (FLA) they administer. The risk of biopsy needle tracking for PCa is minuscule, although increased for some other cancers.
https://sperlingprostatecenter.com/truth-biopsy-track-seeding/
Barry |
User
Thankyou both for your replies, so it wasn't a silly question lol All sorts of things go through my head!
Bone scan done today, biopsy next Monday. On his MRI the other week the consultant said there was no spread to the lymph nodes but I'm wondering why he is having a bone scan as would the cancer not travel to the bones that way?
Thankyou x
User
A bone scan is a completely normal diagnostic procedure, and is just done as a precautionary check. It absolutely does NOT mean that anyone thinks that the cancer has spread, so do try not to be concerned about it (easier said than done, I know from personal experience).
You're almost at the end of the diagnostic road now, and most people find that the toughest time from an emotional perspective. Things get a lot easier once you know where you stand.
Very best wishes,
Chris
User
Thankyou Chris. How would the cancer spread to the bones though?
User
Cancer spreads to the bones through the bloodstream.
You can have mets to the bone but not the nodes or organs, spread to the nodes but nowhere else, mets to soft organs without spread to any other place, or mets to lymph/bone but still contained in the gland.
Edited by member 31 Dec 2018 at 17:53
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Biopsy day today, all went well. Appointment for results in 10 agonising days.
User
Which biopsy is he having?
Best of luck.
Cheers, John.
User
It was a trus fusion MRI ultrasound biopsy. Went well and not too sore
User
Originally Posted by: Online Community MemberLooks like he is getting the best treatment with ‘The Full Monty’ of tests, with a kidney stone as a bonus!
Most prostate cancers are usually very slow growing, so don’t worry too much about the capsule being breached in the next few weeks or months. In any case they can’t really tell until the prostate is biopsied after surgical removal, although they have more idea with a template biopsy as to the exact location of the lesion. Mine was thought to be contained following a template biopsy with 42 cores sampled, in the event it was not. Am I bovvered? No.
If and when cancer is confirmed following the biopsy, you will have plenty of time to consider options for treatment (if any at all), and make sure you obtain second opinions whichever treatment plan you go for.
Enjoy your Christmas.
Cheers, John.
John
Have just tried to PM you but your inbox is full
User
User
Just back from consultant appointment for biopsy results. We have a result of locally advanced Pca, 34 samples taken and 11 showed cancerous, Gleason 3+4 (7). MDT meeting next Thursday and appointment a week on Monday, and if we decide surgery, in a couple of weeks. Feeling strangely less stressed now we know what we are dealing with.
User
Well it could be worse. A friend is G3+4=7 and he has been on active surveillance for four years, although his PSA has risen to 11 now, so I guess he’ll have to come off it soon.
Something definitely worth taking advice on at your meeting with the MDT?
Best of luck.
Cheers, John.
User
Thanks John
That's reassuring that your friend has been on AS, my HB PSA is 21.3 so not sure if that would be an option. But TBH he wants the damn thing out ASAP.
Vx
User
Hi everyone
So......its been a long time since I updated, and my apologies for leaving it so long! My Husband had a radical prostatectomy in February 2019 (where did that time go?) Operation went well, apart from trapped gas under his diaphragm, which he was in agony with. On our follow up appointment we was told the cancer was very very close to the margins, and had the agonising wait for PSA results. To our relief it was undetectable and has been ever since! He is now fit and well and back doing his manual job. Waterworks are on the whole nearly back to normal and ED is helped with caverject. Thankyou to everyone for all the support in what was a horrendous time in our lives xx
User
Glad to hear things have gone well. Long may that be the case.
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User
Great news, and thanks for the update.
User
Great to hear such good news xx
User
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi everyone, I haven’t been on in ages, hope everyone is ok. 3 years post op now and PSA is still undetectable.
User
User
Great to see your update 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Fabulous update, long may it continue.
Just read through this whole thread, everything you described in the early days was just exactly how I was. Every little thing I was paranoid about 🤦🏻♀️ interesting that someone posted how they got a bit sick of their wife asking if they were ok every 5 mins 🤦🏻♀️ definitely something I will have to look to change in myself!!
Lyn also a comment that you made about how it is possible to have lymph node involvement but still contained within the prostate. This is obviously the situation we find ourselves in and it really confuses me and just wondered if you could provide any further explanation. We were told no ENE and no lymphovascular invasion was noted (histology after RALP). Is it still possible for the op to be curative? Or is it very likely for micro mets to be in lymph system?
Thanks for any help
User
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.
Edited by member 22 Jan 2022 at 14:54
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|