I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Emotional roller-coaster

Email this conversation Print this conversation
User
Posted 25 Jul 2024 at 19:39

Hi Guys, wife and I have been reading posts on this site months and find it inspiring and helpful hearing about your brave journeys. Just need to get things off my chest by telling you my story so far, and hear how you guys in a similar position chose your treatments and how you got on

I'm 72yrs, fit and healthy otherwise and like to keep busy. Been on Tamsulosin since 2016 for BPH

I have been diagnosed with PC gleason 9 after a 10mth process starting August 2023 after visiting GP with ED and Pelvic discomfort. I was put on a 2 week cancer referral after 6.3 PSA and abnormal DRE exam by 2  GPs

MRI in October 2023 found PI RAD 5 suspicious area. Had TRUS biopsy in nov which came back NEG in December 2023 this was advised by letter, and to go back to GP with my BPH and pelvic pain symptoms. My GP told me to call urology and insist to see a doctor, this led to appointment in Feb 2024 and was referred for Turp surgery, which was done in April. My PC was found in the Turp pathology. Had a bone scan in June which is clear, and 2nd MRI last week.

Treatment yet to be sorted when MRI results are back. Worried about side effects of all treatments and concerned how long I have gone without treatment with this high grade.

Cheers Al 

User
Posted 25 Jul 2024 at 19:39

Hi Guys, wife and I have been reading posts on this site months and find it inspiring and helpful hearing about your brave journeys. Just need to get things off my chest by telling you my story so far, and hear how you guys in a similar position chose your treatments and how you got on

I'm 72yrs, fit and healthy otherwise and like to keep busy. Been on Tamsulosin since 2016 for BPH

I have been diagnosed with PC gleason 9 after a 10mth process starting August 2023 after visiting GP with ED and Pelvic discomfort. I was put on a 2 week cancer referral after 6.3 PSA and abnormal DRE exam by 2  GPs

MRI in October 2023 found PI RAD 5 suspicious area. Had TRUS biopsy in nov which came back NEG in December 2023 this was advised by letter, and to go back to GP with my BPH and pelvic pain symptoms. My GP told me to call urology and insist to see a doctor, this led to appointment in Feb 2024 and was referred for Turp surgery, which was done in April. My PC was found in the Turp pathology. Had a bone scan in June which is clear, and 2nd MRI last week.

Treatment yet to be sorted when MRI results are back. Worried about side effects of all treatments and concerned how long I have gone without treatment with this high grade.

Cheers Al 

User
Posted 26 Jul 2024 at 08:27

Hi Margot

Thank you for your very helpful and supportive reply. 

We send our best wishes to your husband, that he continues recovering well 🤞🙏

We can identify 💯 with you, when my journey started from September to December apart from MRI and Biopsy, I  only had one face to face appointment, and that was with nurse specialist we had to email and phone for info and results constantly. I  know NHS is under a lot of pressure and I do empathise, but if it wasn't for GP who insisted I get to see a Urologist for my symptoms and have Turp surgery last April, my cancer would not have been picked up. The biopsy had missed it. This is concerning for anyone in this situation. 

Anyway 🤞 they are looking after me, I know I have to wait for surgery, if possible 🙏 mainly because of healing after Turp. 

I do have follow up face to face appointment today with Turp surgeon(Not Cancer specialist) hoping we might get some info about MRI scan I had.

will update how we get on

Al & Jac

User
Posted 25 Jul 2024 at 22:51

Hi Alan

As Adrian said, I'm sorry you find yourself on here, but glad you have joined the group. I hope you will find it useful and supportive, as I do.

I was diagnosed just under a year ago with Gleason 7, T2 bilateral disease. My PSA was 5.2. After a lot of faffing around and a few months on AS my PSA had risen to 8, and a new MRI showed considerable progression. I selected surgery, which I had last week. My main reason was that despite the side effects, I wanted the cancer gone, not just deactivated so to speak.

It's a difficult, and very personal choice, and will largely depend on your full diagnosis/staging etc.

Good luck, and stay active on here now that you have joined us. Remember, there is no such thing as a daft question, and there are some very knowledgeable and helpful people in this group.

Ian.

User
Posted 25 Jul 2024 at 23:42

Hi Adrian

thanks for your reply, much appreciated, sorry you are here too dealing with PC

My current staging is T2 N0 M0 G9 4+5

Fingers crossed its no worse, was hoping surgery would be an option. Like you said 'wait and see MRI results'. 

Glad to read your doing ok mate 🤞 long may it continue 

Will update results 

Al

 

User
Posted 26 Jul 2024 at 00:10

Hi Ian

Thanks much appreciated.  Already I can feel the support and help from you guys, it's good to feel part of the team and not alone.

Hope your feeling ok after your recent surgery and continue to recover well.🤞

I understand how you just want it out and done with, same here.

Yes I will stay on here, wish I  had chatted earlier, its a great group 

Al

 

User
Posted 26 Jul 2024 at 06:10

Hi Al

Sorry you have found yourself here but like you say this is such a supportive place to be!

My husband  was diagnosed April Gleeson 4+5 9

His MRI showed a PIRADS 5 left hand side 16mm lesion that appeared to be contained 

Stage2b NO MO

He had surgery just under 6 weeks ago and is recovering quite well just needing 1 pad per  day at present 

We have an apt for 28 Aug for the results and pray things will look ok from the histology. 

From your point of view I would be pushing hard for any cancellations for you appt as I believe the more your push to quicker things will move along. 
My husband was on a list for surgery and they couldn’t give him a date which I found unacceptable given his diagnosis and I rang the secretary regularly for updates and cancellations and low and behold one day I was on the phone and got one. 

ive not had great confidence in the system and feel I have had to push and push for everything. 

I hope you are able to have a choice of treatment but most of all that you can get things underway quickly. 

M

User
Posted 31 Jul 2024 at 18:24

Update 

Friday saw a nurse at Urology. All went well with 3mth Post turp follow up. Bladder works normal, Doing pelvic exercises must have payed off.

PSA 2 .7 👍

Urology called Monday morning with appointment bought forward to see Consultant Surgeon yesterday at 4pm

MRI clear, suspicious area no longer seen.👍

Consultant advised against RALP surgery for me. I took his advice.

I start Hormone tablets today (Bicalutamide) Have 1st injection in 2 weeks, Radiotherapy will follow 3to6mths time.

Waiting for appointment in Oncology

Regards. Al

 

Show Most Thanked Posts
User
Posted 25 Jul 2024 at 22:33

Hi Al,

I'm sorry you've had to join the forum but I'm glad that you have and found the courage to post. Welcome.

Have you got a cancer staging yet? Or are they waiting for the results of your 2nd MRI scan?

Your future treatment will probably depend on how contained the disease is.  I was diagnosed Gleason 8 (4+4) later upgraded to Gleason 9 (4+5) and cancer staging T3a (just breached the prostate capsule) my PSA was similar to yours.

I selected surgery.

I suggest you wait to see what your MRI results are, and what treatments are available to you before you consider a way forward.

Good luck pal.

Edited by member 25 Jul 2024 at 22:44  | Reason: Additional text

User
Posted 25 Jul 2024 at 22:51

Hi Alan

As Adrian said, I'm sorry you find yourself on here, but glad you have joined the group. I hope you will find it useful and supportive, as I do.

I was diagnosed just under a year ago with Gleason 7, T2 bilateral disease. My PSA was 5.2. After a lot of faffing around and a few months on AS my PSA had risen to 8, and a new MRI showed considerable progression. I selected surgery, which I had last week. My main reason was that despite the side effects, I wanted the cancer gone, not just deactivated so to speak.

It's a difficult, and very personal choice, and will largely depend on your full diagnosis/staging etc.

Good luck, and stay active on here now that you have joined us. Remember, there is no such thing as a daft question, and there are some very knowledgeable and helpful people in this group.

Ian.

User
Posted 25 Jul 2024 at 23:42

Hi Adrian

thanks for your reply, much appreciated, sorry you are here too dealing with PC

My current staging is T2 N0 M0 G9 4+5

Fingers crossed its no worse, was hoping surgery would be an option. Like you said 'wait and see MRI results'. 

Glad to read your doing ok mate 🤞 long may it continue 

Will update results 

Al

 

User
Posted 26 Jul 2024 at 00:10

Hi Ian

Thanks much appreciated.  Already I can feel the support and help from you guys, it's good to feel part of the team and not alone.

Hope your feeling ok after your recent surgery and continue to recover well.🤞

I understand how you just want it out and done with, same here.

Yes I will stay on here, wish I  had chatted earlier, its a great group 

Al

 

User
Posted 26 Jul 2024 at 06:10

Hi Al

Sorry you have found yourself here but like you say this is such a supportive place to be!

My husband  was diagnosed April Gleeson 4+5 9

His MRI showed a PIRADS 5 left hand side 16mm lesion that appeared to be contained 

Stage2b NO MO

He had surgery just under 6 weeks ago and is recovering quite well just needing 1 pad per  day at present 

We have an apt for 28 Aug for the results and pray things will look ok from the histology. 

From your point of view I would be pushing hard for any cancellations for you appt as I believe the more your push to quicker things will move along. 
My husband was on a list for surgery and they couldn’t give him a date which I found unacceptable given his diagnosis and I rang the secretary regularly for updates and cancellations and low and behold one day I was on the phone and got one. 

ive not had great confidence in the system and feel I have had to push and push for everything. 

I hope you are able to have a choice of treatment but most of all that you can get things underway quickly. 

M

User
Posted 26 Jul 2024 at 08:27

Hi Margot

Thank you for your very helpful and supportive reply. 

We send our best wishes to your husband, that he continues recovering well 🤞🙏

We can identify 💯 with you, when my journey started from September to December apart from MRI and Biopsy, I  only had one face to face appointment, and that was with nurse specialist we had to email and phone for info and results constantly. I  know NHS is under a lot of pressure and I do empathise, but if it wasn't for GP who insisted I get to see a Urologist for my symptoms and have Turp surgery last April, my cancer would not have been picked up. The biopsy had missed it. This is concerning for anyone in this situation. 

Anyway 🤞 they are looking after me, I know I have to wait for surgery, if possible 🙏 mainly because of healing after Turp. 

I do have follow up face to face appointment today with Turp surgeon(Not Cancer specialist) hoping we might get some info about MRI scan I had.

will update how we get on

Al & Jac

User
Posted 31 Jul 2024 at 18:24

Update 

Friday saw a nurse at Urology. All went well with 3mth Post turp follow up. Bladder works normal, Doing pelvic exercises must have payed off.

PSA 2 .7 👍

Urology called Monday morning with appointment bought forward to see Consultant Surgeon yesterday at 4pm

MRI clear, suspicious area no longer seen.👍

Consultant advised against RALP surgery for me. I took his advice.

I start Hormone tablets today (Bicalutamide) Have 1st injection in 2 weeks, Radiotherapy will follow 3to6mths time.

Waiting for appointment in Oncology

Regards. Al

 

User
Posted 31 Jul 2024 at 19:20

Thanks for the update Al.

Best of luck with your future treatment mate.

User
Posted 31 Jul 2024 at 19:31

Cheers Adrian 🤞

User
Posted 31 Jul 2024 at 20:33

Stoney1952,

Hope all goes well with your treatment plan.

Best wishes,

JedSee.

User
Posted 31 Jul 2024 at 22:14

Thanks Jedsee

User
Posted 01 Aug 2024 at 07:44

That’s great news, I hope the treatment goes well! 

M

User
Posted 01 Aug 2024 at 07:53

Thank you Margot

User
Posted 01 Aug 2024 at 08:08

It’s great that you now have a confirmed treatment plan in place Al. I hope it goes well for you.

Keep us posted 👍

Ian.

User
Posted 01 Aug 2024 at 08:43

Thanks Ian, hope your continuing to recover well

 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK