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New to all this - it all a bit scary!!

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User
Posted 11 Jun 2022 at 17:40

Hi All,

So how I see it in my mind, I am getting towards the end of Chapter one in my Prostate journey.

I am a 54 Married man (last September) and I went to my doctor at the beginning of April 2022 with an issue I've had on and off for a couple of years after I did some heavy weight training back in 2020. 

Whenever I did heavy weights it brought the aching on in my left groin - if I didn't lift the pain went....so I started waking instead.

I've had a couple of Prostate exams over the years and was told all was good.

So the ache I was having was being brought on by long walking alone so hence my visit in April this year

After I'd had the latest exam my doctor said he was going to refer me as my Prostate felt abnormal and there was a Nodule on the left hand side.

My PSA is 8.9 and I don't have any issues with my waterworks.

I have now had an MRI Scan (MRI confirmed lesions in the left peripheral zones
at the mid gland and the base, both scoring a PI RADS 4 and LIKERT 5. The right
peripheral zone scored a PI RADS 3.) and a Biopsy and I have now got an appointment at Urology (Sheffield Hallamshire) on the 20th June. It's not looking good Is it!

The thoughts going through my head are horrible at the moment, not all the time but I have a couple of days a week where my mind seems to be numb. I am getting closer to the final diagnosis and I'm sure the next few weeks and months are going to be even tougher. I am trying to be stoic and hope for the best and prepare for the worst but it's REALLY difficult. I'm going to keep you updated on my diagnosis. I think it's the waiting that's the worst thing...at the moment.

Take care guys and keep strong!

Cheers

Jon

User
Posted 12 Jun 2022 at 12:14

I was diagnosed at 53 that was four years ago. Now treated and no evidence of the disease.

The groin pain I am inclined to dismiss. Of the three diagnostic tests you have had each one is mildly indicative of cancer. So with all three together it is more likely you do have it than don't.

Hope for the best and prepare for the worst. Well the worst is death and you don't need to be preparing for that. Prepare for a mildly inconvenient treatment plan. There is also the possibility of being given the option of active surveillance. I know someone with a PSA of 12 who has been on this for a decade. And thanks to a life long smoking habit will almost certainly die of something other than PCa.

My advice to everyone diagnosed with PCa is take up a dangerous hobby, it reduces your chance of dieing from prostate cancer.

Dave

User
Posted 11 Jun 2022 at 17:40

Hi All,

So how I see it in my mind, I am getting towards the end of Chapter one in my Prostate journey.

I am a 54 Married man (last September) and I went to my doctor at the beginning of April 2022 with an issue I've had on and off for a couple of years after I did some heavy weight training back in 2020. 

Whenever I did heavy weights it brought the aching on in my left groin - if I didn't lift the pain went....so I started waking instead.

I've had a couple of Prostate exams over the years and was told all was good.

So the ache I was having was being brought on by long walking alone so hence my visit in April this year

After I'd had the latest exam my doctor said he was going to refer me as my Prostate felt abnormal and there was a Nodule on the left hand side.

My PSA is 8.9 and I don't have any issues with my waterworks.

I have now had an MRI Scan (MRI confirmed lesions in the left peripheral zones
at the mid gland and the base, both scoring a PI RADS 4 and LIKERT 5. The right
peripheral zone scored a PI RADS 3.) and a Biopsy and I have now got an appointment at Urology (Sheffield Hallamshire) on the 20th June. It's not looking good Is it!

The thoughts going through my head are horrible at the moment, not all the time but I have a couple of days a week where my mind seems to be numb. I am getting closer to the final diagnosis and I'm sure the next few weeks and months are going to be even tougher. I am trying to be stoic and hope for the best and prepare for the worst but it's REALLY difficult. I'm going to keep you updated on my diagnosis. I think it's the waiting that's the worst thing...at the moment.

Take care guys and keep strong!

Cheers

Jon

User
Posted 11 Jun 2022 at 19:08
Don't get too stressed about it, Jon. I was diagnosed at pretty much the same age as you. I've been treated and here I am four years after diagnosis and life is good.

With a PSA of 8.9 it's overwhelmingly likely that if you do have prostate cancer it's localised, which is an eminently treatable condition. Not particularly pleasant, certainly, but needs must, and you get through it and then you get on with your life.

Diagnosis is the worst part of the entire process - it all takes such a long time and it feels like an eternity. Just try not to dwell on it (which I know is easier said than done) and take it a day at a time. The next stage in the process will almost certainly be a biopsy, which sounds far worse than it actually is, and if that shows cancer (which, from what you've said, it probably will) a bone scan just to check that it hasn't spread elsewhere (which with your PSA, it almost certainly hasn't - it's just a standard diagnostic test). Once that's done you'll get your final diagnosis and you'll know where things stand.

We've all been there, Jon. It's tough to get through, but you will get through it and life will carry on.

All the best,

Chris

User
Posted 11 Jun 2022 at 19:09

Good luck Jon - I hope all goes well and you have a treatment plan soon.

It is hard not to imagine the worst to begin with but there are lots of options and your doctors will advise you of the things that will give the best outcome.

Many men live good long lives even though they have PC and keeping a positive outlook helps.

User
Posted 11 Jun 2022 at 20:39

Hi Jon, all the best. Once you had the results you will be able to move to the next stage. That is doing research and asking loads questions.

A positive outlook does help and also actually talking to your wife and her and getting her involved is a good thing

Edited by member 11 Jun 2022 at 20:40  | Reason: Not specified

User
Posted 11 Jun 2022 at 21:27

Hi Jon,

This really is the worst part, waiting for the results. Regardless of what you’re told I’m really sure you will feel better than you do now as you will be able to get a plan in place and work on getting rid 👍

I really thought the absolute worst when my OH was diagnosed, he’d had aches and pains, a clearing the throat kind of cough for atleast a couple of years 🤦🏻‍♀️ when he got the appointment for the bone scan I fell apart and just thought that’s was it 🤦🏻‍♀️

Nearly 12 months on and we’re in a very different place and just hope it continues this way. More info on my profile.

So much to be hopeful about, and if you don’t get the news you want there is really so much that can be done.

Wishing you all the very best and will look out for your updates.

Elaine

User
Posted 22 Jun 2022 at 11:17

Hi Jon,

You may be a little ahead of me.  2 raised PSAs and a suspicious MRI.  I had my biopsy yesterday and the hospital says it could be 3 weeks before I know.

Good to know that if it is there, that slow growth is possible.  Waiting to learn what the next steps might be.

Stuart

User
Posted 26 Jun 2022 at 12:32

Originally Posted by: Online Community Member
Apparently, they have a 3-month window to get this sorted.

This might be referring to the need to be on hormone therapy for at least 3 months before starting radiotherapy. This is because it makes the radiotherapy more effective.

Edited by member 26 Jun 2022 at 12:40  | Reason: Not specified

User
Posted 26 Jun 2022 at 14:05

Yes you need to be positive I know it's a shock and hits you mentally but their is a way through had no problems with radiotherapy some bowel issues in the early days and odd day with hormone therapy but you need to be strong and do what oncology tell you found city hospital at Nottingham where I was treated outstanding good luck hopefully you have the same outcome my diagnosis was a bit bleak but 2years on and things are ok hopefully finish hormone therapy in December 🙏

User
Posted 26 Jun 2022 at 15:44
John had his RT at 8.30 each morning on his way to work and had no issues driving. He worked full time throughout, and also continued with the gym & playing rugby. Towards the end, he needed an afternoon nap at his desk a couple of times and was certainly tired in the evenings.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 11 Jun 2022 at 19:08
Don't get too stressed about it, Jon. I was diagnosed at pretty much the same age as you. I've been treated and here I am four years after diagnosis and life is good.

With a PSA of 8.9 it's overwhelmingly likely that if you do have prostate cancer it's localised, which is an eminently treatable condition. Not particularly pleasant, certainly, but needs must, and you get through it and then you get on with your life.

Diagnosis is the worst part of the entire process - it all takes such a long time and it feels like an eternity. Just try not to dwell on it (which I know is easier said than done) and take it a day at a time. The next stage in the process will almost certainly be a biopsy, which sounds far worse than it actually is, and if that shows cancer (which, from what you've said, it probably will) a bone scan just to check that it hasn't spread elsewhere (which with your PSA, it almost certainly hasn't - it's just a standard diagnostic test). Once that's done you'll get your final diagnosis and you'll know where things stand.

We've all been there, Jon. It's tough to get through, but you will get through it and life will carry on.

All the best,

Chris

User
Posted 11 Jun 2022 at 19:09

Good luck Jon - I hope all goes well and you have a treatment plan soon.

It is hard not to imagine the worst to begin with but there are lots of options and your doctors will advise you of the things that will give the best outcome.

Many men live good long lives even though they have PC and keeping a positive outlook helps.

User
Posted 11 Jun 2022 at 20:39

Hi Jon, all the best. Once you had the results you will be able to move to the next stage. That is doing research and asking loads questions.

A positive outlook does help and also actually talking to your wife and her and getting her involved is a good thing

Edited by member 11 Jun 2022 at 20:40  | Reason: Not specified

User
Posted 11 Jun 2022 at 21:27

Hi Jon,

This really is the worst part, waiting for the results. Regardless of what you’re told I’m really sure you will feel better than you do now as you will be able to get a plan in place and work on getting rid 👍

I really thought the absolute worst when my OH was diagnosed, he’d had aches and pains, a clearing the throat kind of cough for atleast a couple of years 🤦🏻‍♀️ when he got the appointment for the bone scan I fell apart and just thought that’s was it 🤦🏻‍♀️

Nearly 12 months on and we’re in a very different place and just hope it continues this way. More info on my profile.

So much to be hopeful about, and if you don’t get the news you want there is really so much that can be done.

Wishing you all the very best and will look out for your updates.

Elaine

User
Posted 12 Jun 2022 at 08:42

Thanks for your supporting words and hope.

My best mate tells me all the time - just chill out Jon and I think it's the best option now. I've not no control over it and all the worrying in the world won't change anything.

I've always thought if I got the big C then I don't know how I'd deal with it, but it's like anything in life, you just do. 

I am trying to research things, but it currently gets overwhelming and I have to stop. Little at a time.

Yes, the waiting is very difficult, but a week tomorrow will be the results and hopefully, I'll have a plan and direction in getting rid of it.

At the start of my diagnosis, one of the specialist nurses in Urology said to me, that if it is Cancer there are so many options to treat it. We live in such great times where there have been many medical advances I know they will do everything they can to sort things out.

Have a great Sunday.

Jon.

Edited by member 12 Jun 2022 at 09:45  | Reason: Not specified

User
Posted 12 Jun 2022 at 12:14

I was diagnosed at 53 that was four years ago. Now treated and no evidence of the disease.

The groin pain I am inclined to dismiss. Of the three diagnostic tests you have had each one is mildly indicative of cancer. So with all three together it is more likely you do have it than don't.

Hope for the best and prepare for the worst. Well the worst is death and you don't need to be preparing for that. Prepare for a mildly inconvenient treatment plan. There is also the possibility of being given the option of active surveillance. I know someone with a PSA of 12 who has been on this for a decade. And thanks to a life long smoking habit will almost certainly die of something other than PCa.

My advice to everyone diagnosed with PCa is take up a dangerous hobby, it reduces your chance of dieing from prostate cancer.

Dave

User
Posted 22 Jun 2022 at 11:17

Hi Jon,

You may be a little ahead of me.  2 raised PSAs and a suspicious MRI.  I had my biopsy yesterday and the hospital says it could be 3 weeks before I know.

Good to know that if it is there, that slow growth is possible.  Waiting to learn what the next steps might be.

Stuart

User
Posted 26 Jun 2022 at 12:12

Hi All,

I had my results last Monday and as I thought they weren't good.

This is part of what is in the letter from Urology to my Doctor:

Histology has confirmed a Gleason 4 + 4 = 8 with some cribriform pattern in 4/6 cores on the left hand side of the
prostate with evidence of perineal invasion. MRI would suggest some early T3a disease.

Grade 4 and N0. I then attended a Bone scan on Wednesday to see if the Cancer has spread anywhere else, so fingers crossed.

They were fantastic at the Hallamshire on Monday so professional and caring. I was introduced to my Uro-Oncology Nurse a really nice guy.

They have suggested either having my Prostate out or Radiotherapy. At the moment I am heading towards the latter as the right-hand side of my Prostate (BTW I am calling the Cancer Colin!!) doesn't show any sign of cancer. Plus it seems my quality of life may be better - I'm not sure though. They've also found a slight Ingiual Hernia on the left-hand side. I'm a big guy (17 stone) so they said Radiotherapy would be the best option because of potential incontinence issues. Apparently, they have a 3-month window to get this sorted.

Scary times but they told me the prognosis is good. Work have been fantastic and they've said they will support me 100% and will be led by me. My wife and mates have been very supportive as I'm up and down like a yoyo at the moment!!

I feel better I now know the diagnosis, its not good but there is a plan and I will get through to the other side I'm sure. It's so mind-blowing that there are so many men out there who have got Prostate Cancer but don't know.

Cheers.

Jon.

 

Edited by moderator 26 Jun 2022 at 12:48  | Reason: Not specified

User
Posted 26 Jun 2022 at 12:32

Originally Posted by: Online Community Member
Apparently, they have a 3-month window to get this sorted.

This might be referring to the need to be on hormone therapy for at least 3 months before starting radiotherapy. This is because it makes the radiotherapy more effective.

Edited by member 26 Jun 2022 at 12:40  | Reason: Not specified

User
Posted 26 Jun 2022 at 12:49

Right, I see. Thanks for the info Andy. 

User
Posted 26 Jun 2022 at 13:06

I was diagnosed in 2020 Gleason 9 psa 24.9 went ht/rt route  after 37 sessions off radiotherapy 13 months into 2years off ht psa now 0.01 and generally ok worked all the way through treatment radiotherapy in a morning work straight after good luck with your treatment plan 👍 gaz 

User
Posted 26 Jun 2022 at 13:17
Radiotherapy seems like a good choice. With a T3 diagnosis there would be a significant risk that surgery wouldn't remove all the cancer and that you'd subsequently require RT anyway.

All the best,

Chris

User
Posted 26 Jun 2022 at 13:56

Originally Posted by: Online Community Member

I was diagnosed in 2020 Gleason 9 psa 24.9 went ht/rt route  after 37 sessions off radiotherapy 13 months into 2years off ht psa now 0.01 and generally ok worked all the way through treatment radiotherapy in a morning work straight after good luck with your treatment plan 👍 gaz 

 

Thanks Gaz,

I'm in a strange world at the moment. One minute I feel positive, then my world comes crashing down and I'm thinking all sorts of dark endings. My poor wife must be sick of my sobbing every few days!! But looking at your journey really gives me hope that this time of my life will be in the past someday and I will grow to a ripe old age.

Jon.

User
Posted 26 Jun 2022 at 14:00

Originally Posted by: Online Community Member
Radiotherapy seems like a good choice. With a T3 diagnosis there would be a significant risk that surgery wouldn't remove all the cancer and that you'd subsequently require RT anyway.

All the best,

Chris

Yes, that had crossed my mind Chris. It does seem to be the better option at the moment :-)

User
Posted 26 Jun 2022 at 14:05

Yes you need to be positive I know it's a shock and hits you mentally but their is a way through had no problems with radiotherapy some bowel issues in the early days and odd day with hormone therapy but you need to be strong and do what oncology tell you found city hospital at Nottingham where I was treated outstanding good luck hopefully you have the same outcome my diagnosis was a bit bleak but 2years on and things are ok hopefully finish hormone therapy in December 🙏

User
Posted 26 Jun 2022 at 14:27

Thanks, Gaz,

I am usually quite a positive person, but I didn't see this one coming. I think I'm just coming to terms with what I have and understanding the various aspects of it. I am strong and will get through it, but it's so scary and you never think it will happen to you....until it does.

How tired did the RT make you Gaz and could you drive after having it?

You've done amazingly well and you have genuinely lifted me today. Thank you. 

Edited by member 26 Jun 2022 at 14:27  | Reason: Not specified

User
Posted 26 Jun 2022 at 15:44
John had his RT at 8.30 each morning on his way to work and had no issues driving. He worked full time throughout, and also continued with the gym & playing rugby. Towards the end, he needed an afternoon nap at his desk a couple of times and was certainly tired in the evenings.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jun 2022 at 15:58

No problem with radiotherapy drove all way through it 👍

User
Posted 26 Jun 2022 at 16:00

That's true Lyn I found it ok didn't stop working all the way through you are right odd nap towards the end but no problems 👍

User
Posted 26 Jun 2022 at 16:21

When I was going through radiotherapy, most people were managing OK with it. I went out cycling every day which I enjoyed, and I think the exercise probably helps stave off fatigue.

However, there were a couple of guys who were really struggling with it. One of them hadn't even told his wife that he had prostate cancer - I can't imagine what she thought was going on. I made a point of talking with him when we met up in the radiotherapy waiting rooms.

User
Posted 26 Jun 2022 at 16:42

A good point Andy I haven't cycled since diagnosis I was told not too cycle anymore as not to inflame treatment area will ask if it's ok now to cycle 👍

User
Posted 26 Jun 2022 at 17:13
Cycling isn't going to affect you post-RT gaz although you might want to invest in a prostate-friendly saddle.

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

User
Posted 26 Jun 2022 at 18:13

Thanks Lyn back on bike next week 🚴

User
Posted 26 Jun 2022 at 19:12

I use the following saddle:
https://www.amazon.co.uk/gp/product/B07R61NZ4V/
It does take a few rides to get used to.

It's no longer available, but if you search for noseless saddles, you'll find plenty more which obviously come out of the same Chinese factory.

User
Posted 26 Jun 2022 at 19:29

Thanks Andy 👍

User
Posted 27 Jun 2022 at 22:20

Hi Gang,

Bit of good news today. 

I had Mike from Urology at RHH call me to advise that my Bone Scan was clear and they will be contacting me very soon for an appointment to move onto the treatment side. I think that's is fantastic news and feel much happier today.

😄

Jon.

User
Posted 28 Jun 2022 at 07:59

Great news Jon 👍

User
Posted 28 Jun 2022 at 09:25

Great news Jon good luck with your treatment gaz 👍

 
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