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Waiting for my biopsy result

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User
Posted 25 Jan 2024 at 14:42

It's the waiting! Just one set of results to come now after PSA 11.7, PIRADS5, T3a it's the Gleason from the biopsy and I guess I then have the full set. I've been doing my due diligence and reading everything I can. It seems that, depending on how aggressive the bad cells are most treatment options should be open to me and I just want to get on with doing something about it. Yes I should be patient, yes it's only just over a week since the biopsy, but the waiting is really getting to me. I'm losing enthusiasm for the things that should keep me distracted and upbeat. I'm not the sort of bloke that yells and screams so maybe writing this post is my way of letting off steam. 

As for treatment I want what we all do, a) I want to be cancer free, b) I want to minimise the side effects, and c) I want to be back playing football again as soon as possible. The information on this site is stunningly good, and the comments from members invaluable but there is just so much to go through.

I'm guessing it might be impossible but has someone produced a simple spreadsheet listing the treatments, side effects, and timescales?  Of course when I get the results the consultant may tell me that that only certain treatments are possible but I'm being positive right now.

User
Posted 25 Jan 2024 at 17:02

Hi Derek

Yes, the waiting is always the worst part, just not knowing what’s ahead. In my case it was the MDT meeting that finally decided my staging, which was changed…for the worse😟 if you have a CNS contact them and see if they have the results of the biopsies. I now bypass my GP for my PSA results as they take at least a week, when the results are normally available 1/2 days after the test. I now just phone my CNS and someone phones me back. It really helps with the anxiety.

Withe regard to what you want…

1. yes we all want to be cancer free but the likelihood hood is that either of the options is likely to come up with a similar outcome. It may be with T3a you are more likely to require SRT If you have RARP.
b. My feeling (and it’s only in my experience through Maggies) is that the side effects of RARP are more predictable than HT/RT. RARP is major surgery, you are going to be out of action for a while and need to take your recovery slowly. Most guys I know suffer from fatigue, ED and incontinence after the Op…to varying degrees and length. HT/RT route however seems to depend on the individual, some get off very lightly, others (like me🤣🤣) get every side effect going. It hasn’t stopped my life however, just changed it. Joint ache is by far the worst for me, still trying to do something about that. Others I have had…anxiety, insomnia, ED, zero libido, brain fog, hot flushes can be managed but joint ache is affecting my QOL. If you go down this route you might be on HT for 3 years and the advice I would give anyone on HT is to keep as active as possible.
C. With regards to your football, there’s no reason why you can’t continue playing during HT/RT. Some men get very fatigued but that’s the only side effect I haven’t had! If you have RARP I think it will be a while before you a4e back playing football.

Again, only through my experiences I would say if you go for RARP allow, 1 year to get your energy and fitness levels back to what they were. Going down the HT/RT route you might have side effects lasting up to 3 years or longer, but if you’re fit(and lucky!) you might be able to carry on your life as normal.

All the best whatever you decide.

Derek

User
Posted 25 Jan 2024 at 19:39
I think Dereks reply is spot on.

Everyone reacts differently to treatment and so there is no one size fits all.

So no spreadsheet is going to be predictive of how you will react especially to the drug/chemicals. Surgery is slightly more predictable but even so there have been variations on recovery issues and timings.

Your consultant will be able to suggest their recommendations when they have your results and you can read plenty of info in these pages regarding RARP (surgery), HT/RT (radiotherapy) and SRT (Salvage radiotherapy after RARP).

Good luck and yes, the waiting sucks! :)

User
Posted 25 Jan 2024 at 21:01

Hi DerekZQN. I remember being at your stage, waiting for the biopsy results. The scores on the doors at that point were similar to yours - probably have cancer but only the biopsy result will tell for sure. I was really irritable, frustrated, angry even, couldn't sleep. It is the worst part of your journey (mentally at least). I note you are keen to resume your walking football and that is something great to focus on through your treatment. Decho mentioned about a year to get back to full fitness after RP but I suspect you will be able to get back to your football a good bit sooner, if that is the route you take.  I had a prostatectomy (open surgery) and I reckon I was back to pretty much full fitness after 6 months. I have just looked through an old calendar and noted I did a 20 mile walk in the Peak District at 5 months (without difficulty). The only thing that was different was the incontinence and having to change pads twice during the walk. Good luck.

User
Posted 26 Jan 2024 at 13:15

I had Retzius sparing RARP with neurosafe back in nov 2019. I was back in the gym building my weight training back up steadily 12 weeks later. Does take a year for things to properly settle and scar tissues to soften but never looks back. It’s major surgery and have to be careful on what you do for the full 12 weeks and follow the doctors instructions. I was up an around day rafter surgery and apart from the wounds and catheter felt top notch. Another patient and I were out giving the nurses some banter 🤪😆🫢

User
Posted 26 Jan 2024 at 17:59

Hi Derek,

It’s a life changer no matter what the treatment and you’re probably looking at a long road ahead. I’m 7 months into 3 years of HT, had 6x3 weekly chemo, brachytherapy and today just had the 5th of 20 EBRT radiotherapy sessions. It’s wrecking my body and I want to get out on the mountain bike, but in the mean time doing my best to keep active dog walking.

I wasn’t offered any options other than the brachytherapy, the treatment plan determined by the MDT. I put my trust in it/them.

Do some research, but my advice now would be to make sure you get a really good night out with plenty of fine beer and wine before your treatment starts 😬.

All the very best of luck, and if you do have choices to make I hope it works out for the best 🤞🤞

Cheers

Spongebob

User
Posted 26 Jan 2024 at 19:19

Originally Posted by: Online Community Member

Derek, just got my biopsy result which is 3 + 4 and all treatment options open except AS. Now for weekend of researching pros and cons of each! Took your advice and phoned my CNS so got the result hot off the press - thanks.

Glad I could help and also that you’ve got all options open to you. It’s a difficult one for you I know but you’ll feel better once you’ve made it😊 how long do you have to make your choice? The reason I say this that I know that quite a few men who come to our Maggies Group make a decision after talking to others in the Group…these people are able to offer a first hand experiences of their treatment and side-effects. Also they can tell you all about the surgeon should you go down that route. We seem to be lucky in Fife in that we have a new surgeon who is highly regarded by those who opt for RARP, and also very patient focused and a good communicator.

All the best with your decision!

Derek

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User
Posted 25 Jan 2024 at 17:02

Hi Derek

Yes, the waiting is always the worst part, just not knowing what’s ahead. In my case it was the MDT meeting that finally decided my staging, which was changed…for the worse😟 if you have a CNS contact them and see if they have the results of the biopsies. I now bypass my GP for my PSA results as they take at least a week, when the results are normally available 1/2 days after the test. I now just phone my CNS and someone phones me back. It really helps with the anxiety.

Withe regard to what you want…

1. yes we all want to be cancer free but the likelihood hood is that either of the options is likely to come up with a similar outcome. It may be with T3a you are more likely to require SRT If you have RARP.
b. My feeling (and it’s only in my experience through Maggies) is that the side effects of RARP are more predictable than HT/RT. RARP is major surgery, you are going to be out of action for a while and need to take your recovery slowly. Most guys I know suffer from fatigue, ED and incontinence after the Op…to varying degrees and length. HT/RT route however seems to depend on the individual, some get off very lightly, others (like me🤣🤣) get every side effect going. It hasn’t stopped my life however, just changed it. Joint ache is by far the worst for me, still trying to do something about that. Others I have had…anxiety, insomnia, ED, zero libido, brain fog, hot flushes can be managed but joint ache is affecting my QOL. If you go down this route you might be on HT for 3 years and the advice I would give anyone on HT is to keep as active as possible.
C. With regards to your football, there’s no reason why you can’t continue playing during HT/RT. Some men get very fatigued but that’s the only side effect I haven’t had! If you have RARP I think it will be a while before you a4e back playing football.

Again, only through my experiences I would say if you go for RARP allow, 1 year to get your energy and fitness levels back to what they were. Going down the HT/RT route you might have side effects lasting up to 3 years or longer, but if you’re fit(and lucky!) you might be able to carry on your life as normal.

All the best whatever you decide.

Derek

User
Posted 25 Jan 2024 at 19:39
I think Dereks reply is spot on.

Everyone reacts differently to treatment and so there is no one size fits all.

So no spreadsheet is going to be predictive of how you will react especially to the drug/chemicals. Surgery is slightly more predictable but even so there have been variations on recovery issues and timings.

Your consultant will be able to suggest their recommendations when they have your results and you can read plenty of info in these pages regarding RARP (surgery), HT/RT (radiotherapy) and SRT (Salvage radiotherapy after RARP).

Good luck and yes, the waiting sucks! :)

User
Posted 25 Jan 2024 at 21:01

Hi DerekZQN. I remember being at your stage, waiting for the biopsy results. The scores on the doors at that point were similar to yours - probably have cancer but only the biopsy result will tell for sure. I was really irritable, frustrated, angry even, couldn't sleep. It is the worst part of your journey (mentally at least). I note you are keen to resume your walking football and that is something great to focus on through your treatment. Decho mentioned about a year to get back to full fitness after RP but I suspect you will be able to get back to your football a good bit sooner, if that is the route you take.  I had a prostatectomy (open surgery) and I reckon I was back to pretty much full fitness after 6 months. I have just looked through an old calendar and noted I did a 20 mile walk in the Peak District at 5 months (without difficulty). The only thing that was different was the incontinence and having to change pads twice during the walk. Good luck.

User
Posted 25 Jan 2024 at 22:07

That’s good going Chris, maybe I was being a little pessimistic but just my observations from the men I know in my Maggies Group, which of course is only a small sample. I suspect a lot has to do with how fit and active you are before the Op.

User
Posted 26 Jan 2024 at 13:15

I had Retzius sparing RARP with neurosafe back in nov 2019. I was back in the gym building my weight training back up steadily 12 weeks later. Does take a year for things to properly settle and scar tissues to soften but never looks back. It’s major surgery and have to be careful on what you do for the full 12 weeks and follow the doctors instructions. I was up an around day rafter surgery and apart from the wounds and catheter felt top notch. Another patient and I were out giving the nurses some banter 🤪😆🫢

User
Posted 26 Jan 2024 at 16:40

Derek, just got my biopsy result which is 3 + 4 and all treatment options open except AS. Now for weekend of researching pros and cons of each! Took your advice and phoned my CNS so got the result hot off the press - thanks.

User
Posted 26 Jan 2024 at 17:59

Hi Derek,

It’s a life changer no matter what the treatment and you’re probably looking at a long road ahead. I’m 7 months into 3 years of HT, had 6x3 weekly chemo, brachytherapy and today just had the 5th of 20 EBRT radiotherapy sessions. It’s wrecking my body and I want to get out on the mountain bike, but in the mean time doing my best to keep active dog walking.

I wasn’t offered any options other than the brachytherapy, the treatment plan determined by the MDT. I put my trust in it/them.

Do some research, but my advice now would be to make sure you get a really good night out with plenty of fine beer and wine before your treatment starts 😬.

All the very best of luck, and if you do have choices to make I hope it works out for the best 🤞🤞

Cheers

Spongebob

User
Posted 26 Jan 2024 at 19:19

Originally Posted by: Online Community Member

Derek, just got my biopsy result which is 3 + 4 and all treatment options open except AS. Now for weekend of researching pros and cons of each! Took your advice and phoned my CNS so got the result hot off the press - thanks.

Glad I could help and also that you’ve got all options open to you. It’s a difficult one for you I know but you’ll feel better once you’ve made it😊 how long do you have to make your choice? The reason I say this that I know that quite a few men who come to our Maggies Group make a decision after talking to others in the Group…these people are able to offer a first hand experiences of their treatment and side-effects. Also they can tell you all about the surgeon should you go down that route. We seem to be lucky in Fife in that we have a new surgeon who is highly regarded by those who opt for RARP, and also very patient focused and a good communicator.

All the best with your decision!

Derek

User
Posted 10 Feb 2024 at 18:32

Hello,

Just read your post and having just been given the all clear (read my Profile history ) after almost 8 years with Prostate cancer 4 on AS and almost 4 after my Robotic prostatectomy,salvage RT and on  Hormone treatment and Enzalutimide (first line treatment ) I speak from great experience .

My father died of PC he didn't have his prostate removed he was put on the early part of the Stampide trial but the treatment he received didn't help him.

I decided once my PSA started rising rapidly whilst on AS to get rid of the offending body part  .Unfortunately after the operation it was discovered  some of the cancer had gone to some lymph nodes and it was thought that some of the Illiac nodes were involved so that put me in the advanced group and I had 33 RT sessions plus ADT and Enzalutimide .My PSA dropped like a stone to undetectable within 4 weeks of starting the hormone treatment and there it has remained all scans completely clear.Last Thursday I had a full review with my consultant who.thinks I am in complete remission .However with the caveat that as with most cancer there could be tiny areas of dormant cancer  cells  that if I came off treatment fully might start to grow.So they have halved my dosage and  will monitor the sutuation .In your case you have choices you either get the prostate removed or you go down the RT route .Neither choice is without side effects however I was  dry within 1 week of the operation very  occasionally  some stress leakage but it's no big deal .Unfortunately no nerve sparing was possible but I was fine with that just wanted the diseased organ out .Everyone is different and you do have a second chance at curative treatment if the prostatectomy fails as you can have RT like I did , if you opt for RT first and  that fails  a prostatectomy becomes much more difficult not impossible but more complicated surgery on an already irradiated Prostate .

Do speak to your consultant about what he thinks is best in your situation and take note of all the great advice you get on forums like this one ..I found hearing about other mens experiences and treatment was very helpful .I also read up a lot on all the trial results and scientific papers available which helps put things in perspective .There are many new treatments available and many in the pipeline .I wish you well and hope your treatment is as successful as mine had been .

 

 
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