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

Notification

Error

Newbie needing advice

Email this conversation Print this conversation
User
Posted 29 Nov 2022 at 14:06

Hi everyone,

My Dad was diagnosed yesterday - he is 68 and naturally, we are worried sick.   He has had a biopsy and an MRI so far.  His diagnosis was: Grade 4+4=8 / T-stage T2 ND MX /  PSA 9.3  He was told he has a bone scan this week.  The consultant said that it may be treatable, but if it is in his bones, there is nothing they can do - is this true?

Reading your conversations I noticed PNI being mentioned - they did not talk about this in the appointment, but am now wondering why this was not discussed or is it something that you have to ask?

I have no faith in the hospital that is local to us, as we have had many bad experiences there and have friends who've been under oncology there, who have also not had good experiences.  We are prepared to travel to get better treatment.  I had read a post earlier from a guy called Barry - of which I cannot find now.  He had opted to be treated at a centre of excellence.  Has anyone here opted for this and have any advice they can offer me as to whether this is the right thing to do?

Sorry, I have so many questions, my head is spinning right now, but I just want him to have the best care xx

 

User
Posted 29 Nov 2022 at 18:11

Hi Rebecca, 

Sorry you find yourself here.

It is such a difficult time waiting for and getting the full diagnosis. There really is lots that can be done to cure and if not cure then to treat prostate cancer so things will feel better when you know what is happening and have a plan in place. We’ve all been where you are honestly and we know what a terrible time it can be.

My husband was diagnosed PSA 8.3 Gleason 3+4 (eventually upgraded to 4+5) T3a N1 M1b (the N1 means it was in lymph node and M1b is in bones) again this changed though as we got a second opinion and they said it wasn’t in his bones. He ended up have a prostatectomy (21/12/21), they removed his prostate and 14 lymph nodes (one had cancer in). He didn’t find the operation too bad (everyone is different of course), he recovered really well though and 11 months on he has an undetectable PSA (of course this could change, but more treatment options available to us). His consultant/surgeon was incredible and gave us so much confidence and hope and completely changed our lives. We ended up paying privately, just because of some delays but we did get an NHS referral to the hospital we wanted. We live in Manchester and he had his op in London. 

Keep positive and keep hope, things will get better. I initially just made sure my husband was keeping fit and healthy so he would be ready to face whatever treatment he needed. 

All info is on my profile and there is a link on there to our thread if interested.

Best of luck and keep us posted x

Edited by member 29 Nov 2022 at 18:12  | Reason: Missed info

User
Posted 29 Nov 2022 at 18:12

If the cancer has spread outside the prostate and metastasis to bones then it is incurable. I've had this since diagnosis and still going strong due to the treatments I have been on, nearly 3 years. So they can do something about it if it spreads elsewhere. Good luck with whatever comes your way

User
Posted 29 Nov 2022 at 19:09

Hi Elaine,

Ah your post has made me feel much more positive and gives me some hope.  I also didn't know what the N & M meant, so this is really helpful - thank you.  I imagine the numbers will change and be upgraded when we get the scan results.

The consultant said if it is in his bones then they wont remove the prostate, but obviously this wasn't the case for your husband, this is why I am keen to get a second opinion.  Like you say, it is nice to be in the hands of doctors you have confidence in, as it sounds like you are in the best hands and that is such a good place to be at uncertain times.

 Thanks for your reply, I appreciate it and wish you and your husband all the best.

User
Posted 29 Nov 2022 at 21:24
A bone scan is an entirely routine diagnostic procedure and does NOT mean that the consultant thinks that it has spread to the bones. With the figures you've provided, it's extremely unlikely to have done. Just wait for the diagnostic procedures to reach a conclusion and then you'll know where you stand. It's far too early to be talking about "second opinions" before you've even had a final diagnosis!

Best wishes,

Chris

Show Most Thanked Posts
User
Posted 29 Nov 2022 at 15:07
HIh Rebecca, my husband ( 80 years young) was diagnosed with advanced prostate cancer in April this year. His Gleason was 10 and initial PSA 57.8. His scans and biopsy showed his cancer spread to the bones, spine and had hot spots in one one lung.Despite all of this his Oncologist told him that while his cancer was not curable it was treatable. He has had 6 weeks of chemotherapy and starts radiotherapy treatment just before xmas. His PSA is now 0.1, he is pain free and very active. He plays tennis and badminton at least 3 times a week. Dont give up and if necessary seek other hospitals if you are prepared to travel. Whilst I am aware that my husband's cancer cannot be cured at least I know that he is receiving the best care and treatment options to allow him to live life to the full.

All the best and hope you manage to find someone prepared to treat your husband. Just to say, I found this forum so helpful and it definitely helped me manage my emotions.

Warmest Wishes

Maud

User
Posted 29 Nov 2022 at 17:35

Thank you for your reply Maud - I really appreciate it.  It is good to hear your husband is well and pain free.  You're right, this forum has already made me feel somewhat better and like you say, my emotions have calmed. 

Wishing you and your husband all the best..

User
Posted 29 Nov 2022 at 18:11

Hi Rebecca, 

Sorry you find yourself here.

It is such a difficult time waiting for and getting the full diagnosis. There really is lots that can be done to cure and if not cure then to treat prostate cancer so things will feel better when you know what is happening and have a plan in place. We’ve all been where you are honestly and we know what a terrible time it can be.

My husband was diagnosed PSA 8.3 Gleason 3+4 (eventually upgraded to 4+5) T3a N1 M1b (the N1 means it was in lymph node and M1b is in bones) again this changed though as we got a second opinion and they said it wasn’t in his bones. He ended up have a prostatectomy (21/12/21), they removed his prostate and 14 lymph nodes (one had cancer in). He didn’t find the operation too bad (everyone is different of course), he recovered really well though and 11 months on he has an undetectable PSA (of course this could change, but more treatment options available to us). His consultant/surgeon was incredible and gave us so much confidence and hope and completely changed our lives. We ended up paying privately, just because of some delays but we did get an NHS referral to the hospital we wanted. We live in Manchester and he had his op in London. 

Keep positive and keep hope, things will get better. I initially just made sure my husband was keeping fit and healthy so he would be ready to face whatever treatment he needed. 

All info is on my profile and there is a link on there to our thread if interested.

Best of luck and keep us posted x

Edited by member 29 Nov 2022 at 18:12  | Reason: Missed info

User
Posted 29 Nov 2022 at 18:12

If the cancer has spread outside the prostate and metastasis to bones then it is incurable. I've had this since diagnosis and still going strong due to the treatments I have been on, nearly 3 years. So they can do something about it if it spreads elsewhere. Good luck with whatever comes your way

User
Posted 29 Nov 2022 at 19:09

Hi Elaine,

Ah your post has made me feel much more positive and gives me some hope.  I also didn't know what the N & M meant, so this is really helpful - thank you.  I imagine the numbers will change and be upgraded when we get the scan results.

The consultant said if it is in his bones then they wont remove the prostate, but obviously this wasn't the case for your husband, this is why I am keen to get a second opinion.  Like you say, it is nice to be in the hands of doctors you have confidence in, as it sounds like you are in the best hands and that is such a good place to be at uncertain times.

 Thanks for your reply, I appreciate it and wish you and your husband all the best.

User
Posted 29 Nov 2022 at 19:14

Thanks for your reply.  Good to know you are still good 3 years on, I hope this continues for many more years.  May I ask, did they offer to remove your prostate?  Do you have chemo and hormone therapy?  

User
Posted 29 Nov 2022 at 19:39

Originally Posted by: Online Community Member

Hi Elaine,

Ah your post has made me feel much more positive and gives me some hope.  I also didn't know what the N & M meant, so this is really helpful - thank you.  I imagine the numbers will change and be upgraded when we get the scan results.

The consultant said if it is in his bones then they wont remove the prostate, but obviously this wasn't the case for your husband, this is why I am keen to get a second opinion.  Like you say, it is nice to be in the hands of doctors you have confidence in, as it sounds like you are in the best hands and that is such a good place to be at uncertain times.

 Thanks for your reply, I appreciate it and wish you and your husband all the best.

Glad you’re feeling a bit better.

Your dad may not be upgraded at all. My husbands Gleason score was upgraded after his operation, because they have the full prostate rather than biopsy they get a more accurate reading. The bone scan that your dad is having is fairly standard procedure and really doesn’t mean that they are going to find anything. It was the CT scan that saw the infected lymph node and then everything was confirmed with a PSMA pet scan. 

It was easier for someone to agree to my husbands operation because the bone met was then out of the equation. Most people will say if the cancer has spread outside of the prostate then why bother to operate as you will need other treatment anyway. We were happy to do this (even with lymph node involvement) as he just wanted to get as much out and deal with the rest later. Fortunately so far he hasn’t needed any further treatment but we know that may change in the future. 

Lots of knowledgeable people on here….me not being one of them and can only give you our experience. Everyone happy to help and answer questions if needed though.

Hope your dad is feeling ok with everything, sometimes it’s the people around them that take things worse 🤦🏻‍♀️ 

User
Posted 29 Nov 2022 at 20:11

Hi Rebecca, I think your dad will be around for a good few years, possibly decades. With it being T2 and not a very high PSA, I doubt it has spread to his bones. So this is almost certainly curable. If it has spread outside the prostate it would still be treatable for many years.

I live in Manchester, my local hospital is not good, but fortunately cancer patients get referred to the Christie, which is a centre of excellence. Apparently you can ask to be referred to any hospital in the UK, I'm not too sure the procedure for that. At the moment I would say wait till you know the full diagnosis before deciding where to get treated.

Edited by member 29 Nov 2022 at 22:53  | Reason: Not specified

Dave

User
Posted 29 Nov 2022 at 21:24
A bone scan is an entirely routine diagnostic procedure and does NOT mean that the consultant thinks that it has spread to the bones. With the figures you've provided, it's extremely unlikely to have done. Just wait for the diagnostic procedures to reach a conclusion and then you'll know where you stand. It's far too early to be talking about "second opinions" before you've even had a final diagnosis!

Best wishes,

Chris

User
Posted 30 Nov 2022 at 22:19

Originally Posted by: Online Community Member

Hi Elaine,

Ah your post has made me feel much more positive and gives me some hope.  I also didn't know what the N & M meant, so this is really helpful - thank you.  I imagine the numbers will change and be upgraded when we get the scan results.

The consultant said if it is in his bones then they wont remove the prostate, but obviously this wasn't the case for your husband, this is why I am keen to get a second opinion.  Like you say, it is nice to be in the hands of doctors you have confidence in, as it sounds like you are in the best hands and that is such a good place to be at uncertain times.

 Thanks for your reply, I appreciate it and wish you and your husband all the best.

The side effects of surgery can be pretty awful so in most cases of incurable prostate cancer it is not considered appropriate to put the man through additional treatment that will make no difference to the outcome but may severely affect his quality of life. 

Sensible to wait for the full diagnosis before trying to make treatment decisions - you don't know at this stage what you are dealing with 

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

User
Posted 01 Dec 2022 at 09:58

Thanks for your advice Dave - very much appreciate it.  

Warmest wishes to you..

 
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 ▲
©2024 Prostate Cancer UK