Tricky as ....."all men are different".
It can take a year or more to regain hormones. I get PSA and testosterone tested.
Testosterone was 0.9 at its lowest...if only they'd measure this before treatment then you'd have some idea of your normal level. Last check 4 months ago was 1.8 so on the up.
I know it's pretty much returned as . ... nocturnal erections ✅
Hair regrowing ✅
Hot flushes pretty much gone✅
Some 😭 and 🤯 but fewer and not so severe so almost a ✅
Had proper sex and reached orgasm and a small amount of semen...not quite as before but hey a big ✅!
Tomorrow is blood tests day ..PSA/testosterone/normal bloods....so big anxiety. If all's well, I'll move on to the 6 monthly one and just PSA.....
BTW taking fenugreek water (look it up), I think it has boosted Testosterone.
Cheers
Steve Blog: prostatecancer.vivatek.co.uk |
User
Not the news I wanted. Just had my biopsy results and it shows a Gleason of (4+5) 9 but told it’s contained in the prostrate, prostate smooth, no suspicious of spreading to nodes or bones. Consultants, surgeons to meet next Friday to discuss treatment options. To say I am devastated is an understatement. Done nothing but cry. What next could happen? Thanks.
Edited by member 22 Sep 2022 at 19:04
| Reason: Not specified
User
What happens next is that you get it sorted and you get on with your life. It’s not the news anyone wants to get, but you’ll be treated with curative intent, and it’s a cancer whose treatment has an excellent success rate. Understandably you’re feeling pretty shocked about it right now, but you will get over that (everyone does), and it’ll be sorted out.
Best wishes,
Chris
User
Well when you've been on this forum for a while you re-callibrate what good and bad looks like. A diagnosis saying T2 and no evidence of spread and you think - that's a lucky guy.
Not that being diagnosed with cancer is ever a good bit of luck, but it could be a lot worse.
You have been diagnosed with a very treatable cancer and almost certainly one which can be cured. No one on here is going to say the treatment and side effects will be a bundle of laughs. Some level of ED and incontinence are real possibilities. Hopefully In a few years or if you're lucky months you will be able to put this behind you with minimal disruption. There will always be the nagging doubt that it may return, but you are definitely going to die of something one day, so realising your own mortality shouldn't be too troubling.
I'm a Gleason 9 T3. I won't be brave enough to say I'm cured, but I will say I was treated with curative intent, and there is currently no evidence of cancer, and I'm happy with that.
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User
They might not do a bone scan - some hospitals only do that if they suspect that it has spread and the fact that it is to be discussed at the next MDT on Friday suggests that they are not waiting for a bone scan or PET?
You have remembered correctly SLF. Your Gleason score is a 9 which usually means that either the majority of cells were a 5 but there were also some 4s OR the majority were 4s but there were also some 5s. Sometimes the results seem confusing because they talk about the Gleason grades ( a description of how distorted the cells look under a microscope - a 3 or a 4 or a 5) and the Gleason score (the sum of the two most common patterns such as 4+5 or 5+4); in your case, there were a lot of 3s (which is reassuring) but they don't want to ignore the 5s so have given you a higher total. The meeting next Friday is the multi-disciplinary meeting, involving urologists, oncologists and other specialisms such as radiology - together, they look at all the diagnostics (your scans, biopsy results, etc) and form a view about which treatments might be suitable. Then someone will tell you what the MDT view was - as stated above, you might be told that surgery, radiotherapy or brachytherapy would all be suitable, or you may be told that one treatment is going to be better for you than others. Assuming you are given a choice, you then ask for an appointment with a urologist and a separate appointment with an oncologist to discuss the treatment, potential side effects, likelihood of success, etc and then you make a decision about which treatment you want to go for. This is where the PCUK toolkit mentioned above comes in handy - all treatments have side effects and you end up having to decide a) which treatment gives you the best chance of full remission and b) whether you can live with the potential side effects of that particular treatment.
Things will seem better once you have the full diagnosis and a treatment plan. My dad was diagnosed nearly 25 years ago and my husband 13 years ago.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
As Chris said earlier you will have your treatment and get on with life after hopefully with minimal side effects 👍
User
This is entirely normal. Believe me, we’re all been there and know how stressful this is, but try not to get yourself in a panic about it. You’re NOT going to die (well, you are, but not from this!). You’ll go through some mildly unpleasant but entirely bearable treatment, and it’ll be sorted. Things will all seem a lot brighter once there’s a definite treatment plan in place.
Just take things one day at a time and you’ll get through it all just fine. You’re not alone in this.
All the best,
Chris
User
Andy, unless you have some vanishingly rare variety of prostate cancer, if it had spread to your bones you could expect a PSA in the hundreds or even thousands. A PSA of 12 is entirely typical for localised cancer (mine was 31, if that’s any comfort!). Spread is vanishingly unlikely. The bone scan is purely routine. Don’t stress about it.
Cheers,
Chris
User
It's not stupid at all. Nobody who hasn't gone through this personally can understand what a stressful time it is. It's good to try and take your mind off it, but for goodness sake don't feel guilty about not being able to enjoy yourself at the moment!
You will feel a lot better once all the tests are done and there's a plan of action in place.
I'm three and a half years after the end of my treatment and I still get pretty stressed in the few days between having my 6-monthly PSA test and finding out the result. I don't think that will ever go away. The rest of the time I never think about it, but the tests are always a bit of a worry.
All the best,
Chris
User
Brilliant update Andy, Your options might have narrowed but your determination to improve the situation clearly hasnt.
Love it.
Jamie
User
Excellent news! I think once they give you a plan, you feel some relief. My prostate size was double yours (I know Size Queen) with T3b but pretty much no symptoms....here I am 9 months on from RT and I finished HT early cos of the side effects...so 7 months on from that and lo, my hormones are back,(speaks in a much lower voice), I be more manly now! Lol . I hope the blog helps - lots of info in there - esp the RT stuff, which you'll find a doddle. I hope the HT side effects are slight - every man is different. I'm guessing your wife has seen the blog and/or is fully genned up on HT? Then she'll be able to support you...biggest thing I did was a diet change.
Do report back on here...we're here to help.
Steve
Steve Blog: prostatecancer.vivatek.co.uk |
User
Just an update - some 6 months after hormones back - last blood tests showed PSA = 0.4 and testosterone 9.7, so in the "normal" range. Pretty much ALL side effects of this awful chemical castration have faded...so that's after nearly a year of stopping HT.
I've still got the sore nipples but hopefully this will fade too. The ED is still there - I can get all manner of ED meds on repeat prescription so that's good (sildenafil, tadalafil and alprostadil gel). So I hope for those of you recovering from HT - it's a bit of good news.
Steve Blog: prostatecancer.vivatek.co.uk |
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User
If it is localised then you will be offered a range of treatments. Surgery, HT/ RT, possibly Brachytherapy, possibly HIFU. The last two are Trust dependant.
Good news, localised means you are likely on a curative pathway. Was this not discussed, I am very surprised? After my MRI the consultant said we can fix this, a message which was reinforced after a positive Biopsy result
Have you been provided a uro-oncology nurse yet, they will answer questions. You can also contact the prostate cancer nurse team on this site for advice, they are excellent.
You can also download the prostate cancer toolkit which has a raft of information neatly set out.
https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100
Most of us feel better about things once a treatment plan is in place.
User
What happens next is that you get it sorted and you get on with your life. It’s not the news anyone wants to get, but you’ll be treated with curative intent, and it’s a cancer whose treatment has an excellent success rate. Understandably you’re feeling pretty shocked about it right now, but you will get over that (everyone does), and it’ll be sorted out.
Best wishes,
Chris
User
To be honest it was a specialised nurse who just told us the results and said it was T2, that MRI showed no abnormal mets on bones in that area or nodes. She also said Grade 5, Gleason 9 but did say that most of the core samples were less than Grade 5 and where 3s but they go for the highest one? I am now even doubting myself what she said now but my wife listened and confirmed above and said it would be the team that will offer treatment paths. Will I need a PET scan or bone scan? How long before potential treatment starts from diagnoses? So many questions. Frightened to death! Thank you.
User
Well when you've been on this forum for a while you re-callibrate what good and bad looks like. A diagnosis saying T2 and no evidence of spread and you think - that's a lucky guy.
Not that being diagnosed with cancer is ever a good bit of luck, but it could be a lot worse.
You have been diagnosed with a very treatable cancer and almost certainly one which can be cured. No one on here is going to say the treatment and side effects will be a bundle of laughs. Some level of ED and incontinence are real possibilities. Hopefully In a few years or if you're lucky months you will be able to put this behind you with minimal disruption. There will always be the nagging doubt that it may return, but you are definitely going to die of something one day, so realising your own mortality shouldn't be too troubling.
I'm a Gleason 9 T3. I won't be brave enough to say I'm cured, but I will say I was treated with curative intent, and there is currently no evidence of cancer, and I'm happy with that.
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User
It's an anxious time going through diagnosis.
They will want to do a nuclear bone scan or even a PET scan. This is pretty routine for anything other than Gleason 3+3, and doesn't mean they think it's spread.
User
They might not do a bone scan - some hospitals only do that if they suspect that it has spread and the fact that it is to be discussed at the next MDT on Friday suggests that they are not waiting for a bone scan or PET?
You have remembered correctly SLF. Your Gleason score is a 9 which usually means that either the majority of cells were a 5 but there were also some 4s OR the majority were 4s but there were also some 5s. Sometimes the results seem confusing because they talk about the Gleason grades ( a description of how distorted the cells look under a microscope - a 3 or a 4 or a 5) and the Gleason score (the sum of the two most common patterns such as 4+5 or 5+4); in your case, there were a lot of 3s (which is reassuring) but they don't want to ignore the 5s so have given you a higher total. The meeting next Friday is the multi-disciplinary meeting, involving urologists, oncologists and other specialisms such as radiology - together, they look at all the diagnostics (your scans, biopsy results, etc) and form a view about which treatments might be suitable. Then someone will tell you what the MDT view was - as stated above, you might be told that surgery, radiotherapy or brachytherapy would all be suitable, or you may be told that one treatment is going to be better for you than others. Assuming you are given a choice, you then ask for an appointment with a urologist and a separate appointment with an oncologist to discuss the treatment, potential side effects, likelihood of success, etc and then you make a decision about which treatment you want to go for. This is where the PCUK toolkit mentioned above comes in handy - all treatments have side effects and you end up having to decide a) which treatment gives you the best chance of full remission and b) whether you can live with the potential side effects of that particular treatment.
Things will seem better once you have the full diagnosis and a treatment plan. My dad was diagnosed nearly 25 years ago and my husband 13 years ago.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Thank you Lyn. You do start doubting yourself what was said to you and I could kick myself for not writing it down. She definitely said it was contained in the prostrate, MRI did not pick any areas up in my bladder, nodes, mets on the bones or seminal vesicle. Nothing picked up on the DRE unusual as he said it was smooth but enlarged and nothing in the rectum. I have left a message this morning to clarify the results. My wife also said she either said T2 or Stage 2. Not ate anything since yesterday as feel sick with worry.
User
If it is contained in the prostate will be treated with curative intent I had same mine Gleason 9 psa 24.9 37 fractions off radiotherapy and on hormone therapy until December 2years in total psa steady at 0.01 worked all the way through the radiotherapy and more or less back to normal now just the periodic hemaroids 🙈 but ok up to press good luck with your treatment gaz 👍
User
Panicking now as got to have a bone and CT scan next week. Is this normal? Being told it’s normal procedure. I am all over the place again now!
User
Don't pannick it's normal I had exactly the same tests as you have been asked to go too 👍
User
As Chris said earlier you will have your treatment and get on with life after hopefully with minimal side effects 👍
User
This is entirely normal. Believe me, we’re all been there and know how stressful this is, but try not to get yourself in a panic about it. You’re NOT going to die (well, you are, but not from this!). You’ll go through some mildly unpleasant but entirely bearable treatment, and it’ll be sorted. Things will all seem a lot brighter once there’s a definite treatment plan in place.
Just take things one day at a time and you’ll get through it all just fine. You’re not alone in this.
All the best,
Chris
User
Normal. I had a CT scan, they were suspicious of free fluid in my body cavity - came to nothing. Wish they had given me a bone scan just for reassurance but I guess I had not crossed that threshold. Statistically it's a very low chance that the cancer has spread from a localised contained site. I don't see mention of your PSA result.
User
Chris your replies inspire me. I have also spoken to the MacMillan nurse who told me it’s normal practise and no matter what even if it was in my bones it’s still a treatable plan. Just all 100mph at the moment. Urology also rung me back said any Gleason over 8 they have to cover all bases so there’s no surprises after. I need to remain positive. Feel very well and in the best place for treatment.
User
Good to hear be positive 👍
User
My PSA was 12 Gaz. Only symptom I had was peeing in the night more. I can’t eat with worry and every flaming twinge in my body I now think it’s spread to my bones. I need to stop this negative thinking! Again thanks to you all for replying.
Andy
User
Andy, unless you have some vanishingly rare variety of prostate cancer, if it had spread to your bones you could expect a PSA in the hundreds or even thousands. A PSA of 12 is entirely typical for localised cancer (mine was 31, if that’s any comfort!). Spread is vanishingly unlikely. The bone scan is purely routine. Don’t stress about it.
Cheers,
Chris
User
Cheers Chris. Another question. Sorry about this. What’s the CT scan for?
Andy
User
Originally Posted by: Online Community MemberAndy, unless you have some vanishingly rare variety of prostate cancer, if it had spread to your bones you could expect a PSA in the hundreds or even thousands. A PSA of 12 is entirely typical for localised cancer (mine was 31, if that’s any comfort!). Spread is vanishingly unlikely. The bone scan is purely routine. Don’t stress about it.
Cheers,
Chris
Its almost impossible to not have man love for our Cheshire Chris. Just saying.
Jamie
User
Sound advice by the stalwarts Lyn Barry Chris Dave and others keep us going we all need the great advice to keep us informed and to keep positivity it's a lonely place with this desease keep it up folks we all need the sound advice going forward thanks to you all 👍 gaz
User
Hi there,
Yes as many others have said, we've all been there ...we mean this as a comfort...you are not alone...you will get thru this. Take heart from what us guys have said...take a look at my blog...week by week account. It's a shock but you'll overcome.
They usually do a bone scan...easy peasey ......this is to rule out spread to bones...then a CT scan... rules out a spread anywhere else and you may get a PSMA pet scan too..this is really good at giving a more definitive negative..i.e.it really hasn't spread! Then and only then do you start treatment...
I took a voice recorder in to all my consultations...your phone would do.
There's many on here who can help advise you but your medical team/CNS will be your best guide! But do get all the booklets and info packs , toolkit etc from this charity...they're excellent!
Cheers
Steve.
prostatecancer.vivatek.co.uk
Steve Blog: prostatecancer.vivatek.co.uk |
User
Thanks Steve. Blog is a great read and some stuff I can already relate to. I do need to be more positive but it’s the doubting what the original Specialist Nurse said! Even though my wife was there and confirmed! She also said it was curable and treatable but was unsure of which option of treatment until the MDT. Then you think as she got it wrong etc. I am sure will feel somewhat better once I know the treatment plan. Ironically 2 of my friends had/have prostrate cancer. One had removal 12 years ago with identical Gleason, loving life and the other as lived with treatment for the last 10 years because it had escaped the capsule and he continues to love life. Thanks for the continued support.
Andy
User
MRI scan isn't great for looking at lymph nodes. CT scan shows lymph nodes better.
User
Yes the MRI CT and bone scans are good at finding stuff but not too good at telling us that there's nothing there...if that makes sense. In fact bone and CT scans are around 60% whereas the PSMA pet scan is up in the 90's for ruling out the spread of cancerous cells to other parts. There is a logic to the order of scans!
You seem to be doing well.
Steve Blog: prostatecancer.vivatek.co.uk |
User
I don’t feel I am 🥲 that worried about everything I feel sick and can’t eat then I think is this advanced prostate cancer! I know it’s stupid! I am driving my wife and kids mad! Wife wants us to go out to our club with friends for a beer but feel guilty for that and I know it will take our minds off it for a bit!
User
Bloody hell, mate, GO!
You'll soon come to realise that it's no good worrying about things you can't change or do anything about . Learn to compartmentalise ...put off the worry until the next bit.... I call them Golden Zones! I'm in one right now..... I could worry that my cancer hadn't been cured and has come back, unlikely but you do worry or you could . I won't actually know until my next test in mid November! So, you must "enjoy" this zone and extract lots of pleasure from it. Be kind and good to yourself !
If you get more news...we're here to help. Meanwhile get those beers in. Show your folks that you're in a Golden Zone and plan to make the most of it! 😂😉
Edited by member 24 Sep 2022 at 15:47
| Reason: Correction
Steve Blog: prostatecancer.vivatek.co.uk |
User
User
It's not stupid at all. Nobody who hasn't gone through this personally can understand what a stressful time it is. It's good to try and take your mind off it, but for goodness sake don't feel guilty about not being able to enjoy yourself at the moment!
You will feel a lot better once all the tests are done and there's a plan of action in place.
I'm three and a half years after the end of my treatment and I still get pretty stressed in the few days between having my 6-monthly PSA test and finding out the result. I don't think that will ever go away. The rest of the time I never think about it, but the tests are always a bit of a worry.
All the best,
Chris
User
Steve Blog: prostatecancer.vivatek.co.uk |
User
Hi,
I have also been through it. It is a difficult lengthy journey especially with NHS. Lots of tests and anxiously waiting for the results. Mine got mixed up with couple of other issues. The 1st MRI scan picked up spot in my colon and bone. That made me really worried to the extend I had “panic shock” and had to call for emergency and even ended up staying in hospital for a day to recover a bit. At the end the scans on bone and colon testing to be negative. I also got a better result after surgery; T3a turned to be T2c and with negative margin. You see, even some of the test results are not accurate and could inject unnecessary anxiety. Nothing is for certain until diagnosis. The hardest part is testing period and once the plan of treatment started things get running much smoother.
Rather than just reading many statistics and leaflet, also talk to people especially those who have the experience and gone through it. Amazingly, this ugly illness turns many patients/sufferers even more stronger, helpful, kinder, …. and these people are more helpful than leaflets. I would have a much harder time if i was not in touch with this forum. Thanks to them many times again.
User
Just want to say, so many strong and positive replies on here, and elsewhere. What a great forum this is. Best wishes to topic starter and all on here.
User
Wanted to change best wishes topic starter to best wishes to SLF, but cant manage it. So put it here instead 😃
User
It’s the first time I’ve seen this thread. Really hope things are better for you now SLF and that you have a plan in place.
Best of luck
User
Hi Elaine
I now have my treatment plan with a curative intent. I am Gleason 9 - (4+5) PSA 12 - T2c M0 N0. Been told all contained in the capsule. Bone and CT scan clear. Now on HT then 20 sessions of RT at the end of January then HT for 2 years. I could not have RP due to DVT history through a trauma injury. I can’t have brachytherapy due to prostate being small (20cc). No major side effects from the Zoladex as yet but expecting some along the way. Been pulling some heavy bins and dull ache in buttock now but mind playing tricks it’s the PCa spreading! Every twinge! It’s mad what this disease does to your mind! Thanks for replying Elaine.
Andy
User
Great news Andy that it is contained and you have started treatment now. It’s really not easy what all you guys are going through but you’re all pretty amazing in my eyes.
As for the twinges and worry….I’m the worlds worst with my hubby! Every ache, cough etc my tummy does a flip 🤦🏻♀️ I think it’s normal to feel like that though and I am improving….a little! I think the HT can cause a few aches and pains too.
Wishing you all the very best with your treatment going forward.
User
Brilliant update Andy, Your options might have narrowed but your determination to improve the situation clearly hasnt.
Love it.
Jamie
User
Excellent news! I think once they give you a plan, you feel some relief. My prostate size was double yours (I know Size Queen) with T3b but pretty much no symptoms....here I am 9 months on from RT and I finished HT early cos of the side effects...so 7 months on from that and lo, my hormones are back,(speaks in a much lower voice), I be more manly now! Lol . I hope the blog helps - lots of info in there - esp the RT stuff, which you'll find a doddle. I hope the HT side effects are slight - every man is different. I'm guessing your wife has seen the blog and/or is fully genned up on HT? Then she'll be able to support you...biggest thing I did was a diet change.
Do report back on here...we're here to help.
Steve
Steve Blog: prostatecancer.vivatek.co.uk |
User
I was diagnosed T3b n0m0 gleason 9 (4+5) last January. Started HT followed by RT (60 gy in20 fractions) May / June. First follow up September, psa 0.08, Oncologist stopped zoladex because of side effects. Good! Still feel wrecked with fatigue and aches and pains 4 mo after stopping zolly. Last implant July. How longwill this go on for? Next psa and testosterone test in Jan. It gets a bit depressing. Any good news on duration appreciated!
Peternigel
User
Tricky as ....."all men are different".
It can take a year or more to regain hormones. I get PSA and testosterone tested.
Testosterone was 0.9 at its lowest...if only they'd measure this before treatment then you'd have some idea of your normal level. Last check 4 months ago was 1.8 so on the up.
I know it's pretty much returned as . ... nocturnal erections ✅
Hair regrowing ✅
Hot flushes pretty much gone✅
Some 😭 and 🤯 but fewer and not so severe so almost a ✅
Had proper sex and reached orgasm and a small amount of semen...not quite as before but hey a big ✅!
Tomorrow is blood tests day ..PSA/testosterone/normal bloods....so big anxiety. If all's well, I'll move on to the 6 monthly one and just PSA.....
BTW taking fenugreek water (look it up), I think it has boosted Testosterone.
Cheers
Steve Blog: prostatecancer.vivatek.co.uk |
User
Just an update - some 6 months after hormones back - last blood tests showed PSA = 0.4 and testosterone 9.7, so in the "normal" range. Pretty much ALL side effects of this awful chemical castration have faded...so that's after nearly a year of stopping HT.
I've still got the sore nipples but hopefully this will fade too. The ED is still there - I can get all manner of ED meds on repeat prescription so that's good (sildenafil, tadalafil and alprostadil gel). So I hope for those of you recovering from HT - it's a bit of good news.
Steve Blog: prostatecancer.vivatek.co.uk |