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User
Posted 25 Nov 2023 at 16:40

Hi, 

Just after some advice please. 

My dad has been undergoing tests for prostate cancer after ending up one evening in A&E with urine retention.

We went privately to see a urologist who gave him a prostate exam and said everything felt normal and the problems Were likely to be BPH.

Fast forward a few weeks and he went to have an MRI scan with the NHS. Results showed some areas of concern so they then requested a biopsy, which he had 5 weeks ago. He has an appointment this Monday coming for the results. 

Today he had letter to go for a bone scan. 

So this to me says they've now told him he has cancer before having the actual appointment for the results. 

So I'm just after some advice on what warrants a bone scan? Is this normal for a low grade cancer or only if the biopsy Gleason score is high? His PSA levels have been high (not sure what they currently are but we were told by the urologist who we saw privately that these are affected by having a catheter which he had after the A&E visit)  He has not had his levels checked since this was removed. 

I'm angry that he had a letter before his results but it is what it is I guess. 

Thanks in advance 

 

 

 

Edited by member 25 Nov 2023 at 20:21  | Reason: Not specified

User
Posted 02 Jan 2024 at 20:59

You can't read anything in to the timing or type of appointment. Just take things as they come.

Dave

User
Posted 09 Jan 2024 at 20:16

Originally Posted by: Online Community Member
The cancer has spread to a nearby lymph node.

If they're saying it's a single nearby lymph node, then it can be treated "with curative intent". Treating lymph nodes that are further away can be harder but he's lucky the cancer hasn't spread to his bones.

At age 74 I was in a similar position, G9 with spread to seminal vesicles and 3 nearby lymph nodes. I was given radio therapy and 2 years of hormone therapy [Zoladex] and a year after finishing things are looking good. No long term guarantees but a good start.

Jules

 

User
Posted 26 Nov 2023 at 01:04

I've just replied on this thread to a different question, but with an answer pertinent to this one.

https://community.prostatecanceruk.org/posts/t29959-How-long-before-you-get-your-biopsy-results#post288397

 

Dave

User
Posted 27 Nov 2023 at 12:38
His Gleason is an estimate based on what they know - bear in mind that a biopsy is a sample from the prostate.

His PSA is high but at least they have caught it but PSA is not a good guide on the cancer progression so no point in worrying over that at this stage. The bone scan will determine if there has been any spread but his 3+4 at this stage is a good indicator that it should be contained.

User
Posted 27 Nov 2023 at 15:05

GT, have you spoken to the nurses on this site,the number is at the top of the page. They are absolutely brilliant and caring. 

Thanks Chris 

User
Posted 08 Jan 2024 at 22:27

So we had the results of my dad's PET CT today. 

The cancer has spread to a nearby lymph node. The consultant was very vague and said the full findings would be sent by letter. 

I asked about his staging and was told he is T3N1M0

His treatment will be tablets and hormone injections followed by 4 weeks of radiotherapy. 

I don't know how to feel. Is lymph nodes as bad as it going to his bones? How long can the treatment give him? 

I feel we were ushered in and out so fast and just given a booklet to read. The more I seem to Google the less I feel I understand:(

User
Posted 09 Jan 2024 at 19:27

Hi Gthomas13,

I'm sorry that you find yourself on this website, but there are lots of very knowledgeable people on here who will be able to help you much better than I can.

But it is my understanding that a diagnosis of T3 N1M0 is considered treatable, with a curative intent. 

If the cancer had spread to his bones (metastasized) then he would have a diagnosis of (at least) M1, instead of M0 ('M' standing for metastasis).

So, there is scope for optimism here.

Best wishes,

JedSee.

User
Posted 10 Jan 2024 at 15:15

Sorry to hear it has spread,hopefully he gets the treatment soon and it helps sending best wishes xx

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User
Posted 25 Nov 2023 at 18:55

Hi,

Above scan is one of the tests normally done to ascertain what is going on, to check for any possible spread, or is it localised still within the prostate. However saying that I was only given my scan appointment after being told of localised grade 2 prostate cancer. 

Perhaps the hospital is being ultra efficient. 

Only Monday will tell.

We are here for you on the forum, however Mondays appointment goes

 

P.

User
Posted 25 Nov 2023 at 19:03

GT,it would be useful to know what you are calling a high PSA and your Dad's age. Bone and CT scans are standard at some hospitals following a positive diagnosis. If a PSA is very high they sometimes skip the biopsy.

Thanks Chris 

User
Posted 25 Nov 2023 at 19:34

Thank you for your reply and support :)

 

User
Posted 25 Nov 2023 at 19:36

Thank you for your reply 

Yes I will definitely find out what the PSA level is when we go in on Monday. 

Hoping for positive news. 

 

User
Posted 25 Nov 2023 at 19:46
A bone scintigraphy is normally performed if there is evidence of some cancer being present. It checks for any mets that may have originated from the prostate mothership. In most cases, especially with early detection, they come back clear. Anyone who has been diagnosed with even minimal PCa will be requested to have a bone can - so it is perfectly normal.

I am surprised that he hasn't had his MRI results - maybe they have crossed in the post but it's normal to have them before the request for bone scan. However I would suggest that it is likely he has some form of PCa but it does sound as they it was caught early so a very chance that it can be cured by one of the treatments that will be discussed with him.

User
Posted 25 Nov 2023 at 20:08

Thank you for your reply Steve. It is reassuring to hear that it is fairly normal for them to request one 

Sorry I meant he has not had his biopsy results. He had the MRI before the biopsy and they told him via a phone call that there was some areas that looked suspicious so they were going to follow up with a biopsy 

User
Posted 25 Nov 2023 at 21:49
Ahh, that makes sense. The biopsy samples are sent to the lab to be examined and can take a bit of time to come back so they would have got the bone scan set up in the meantime - the MRI would have been sufficient to say that a bone scan was worth having.

Good luck!

User
Posted 25 Nov 2023 at 22:14

Ah that makes sense. Thank you :) 

 

User
Posted 26 Nov 2023 at 01:04

I've just replied on this thread to a different question, but with an answer pertinent to this one.

https://community.prostatecanceruk.org/posts/t29959-How-long-before-you-get-your-biopsy-results#post288397

 

Dave

User
Posted 27 Nov 2023 at 11:42

So an update from today's appointment. 

My dad, is 80 in May (didn't add that to my original post) 

His biopsy showed cancer. His score was 3+4 which I'm taking as a positive 

My worry is the PSA result was 72. 

He has only had two PSA tests, 67 and 72. Both have been whilst he had a catheter in. He does not have it in now but they won't retest as we've been told there is no need 

Next step now is a bone scan on Friday and then possible PET scan depending on results of bone scan.

Any helpful advice or words of encouragement would be greatly received. 

I'm happy his Gleason score was almost as good as it could be, but the PSA is really worrying me 😕 

 

User
Posted 27 Nov 2023 at 12:38
His Gleason is an estimate based on what they know - bear in mind that a biopsy is a sample from the prostate.

His PSA is high but at least they have caught it but PSA is not a good guide on the cancer progression so no point in worrying over that at this stage. The bone scan will determine if there has been any spread but his 3+4 at this stage is a good indicator that it should be contained.

User
Posted 27 Nov 2023 at 13:33

Thank you so much for your quick reply. I really appreciate it and it's reassuring to hear. :)

User
Posted 27 Nov 2023 at 15:05

GT, have you spoken to the nurses on this site,the number is at the top of the page. They are absolutely brilliant and caring. 

Thanks Chris 

User
Posted 05 Dec 2023 at 22:32

*update

Dad had his bone scan last Friday and we had the results today - clear, no sign of spread. I'm so pleased and we can relax a little bit for now. 

The nurse who rang to give the results said he may be called for a CT scan now but his follow up appointment with the consultant will be in January. 

I was surprised that he wouldn't be offered treatment options straight away, is this normal to wait that long? 

 

 

 

User
Posted 06 Dec 2023 at 00:17
Nothing major is going to happen between now and January - the prostate cancer cells won't suddenly go galloping off around his body if they haven't done so up to now. Your dad has probably had prostate cancer for 20 or 30 years - let him have a nice Christmas with no side effects first!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2023 at 06:20

Thank you. When you say it like that then I guess a few weeks are neither here nor there. 

It's just because his PSA is high (70) I'm still concerned it may have spread to other parts of his body. 

I am also very much a worrier and think of the worst case scenario all of the time so I guess I just want to know all the facts. I'm my own worst enemy lol 

User
Posted 07 Dec 2023 at 05:15
The bone scan is a ‘normal’ process on the NHS cancer pathway to create a whole picture of the potential cancer. It answers the question before it’s asked - has the cancer spread to the bones. When you visit your consultant they’ll have a full and clear view of the status of the cancer and therefore concentrate on next steps.
User
Posted 07 Dec 2023 at 16:08

Thank you for your replies. 

Dad a letter confirming the negative bone scan results today and to let him know a PET/Cat scan has now been booked for two weeks time. 

 

Edited by member 07 Dec 2023 at 19:24  | Reason: Not specified

User
Posted 02 Jan 2024 at 18:29

Hi all, so my dad had his CT PET scan the Friday before Christmas.  

The scan was done at Cardiff University Hospital as his hospital does not have the PET scanner. 

With his bone scan they rang and told him result was negative and also sent a letter to confirm. 

With this one they've asked him to attend an appointment at the hospital. Does this mean it's bad news? Or would it be just to discuss the next steps for his treatment. The appointment they've given him is a cancellation which makes me feel they are rushing him in?

Has anyone had a similar experience they can share please? 

Thank you. 

 

 

User
Posted 02 Jan 2024 at 20:59

You can't read anything in to the timing or type of appointment. Just take things as they come.

Dave

User
Posted 08 Jan 2024 at 22:27

So we had the results of my dad's PET CT today. 

The cancer has spread to a nearby lymph node. The consultant was very vague and said the full findings would be sent by letter. 

I asked about his staging and was told he is T3N1M0

His treatment will be tablets and hormone injections followed by 4 weeks of radiotherapy. 

I don't know how to feel. Is lymph nodes as bad as it going to his bones? How long can the treatment give him? 

I feel we were ushered in and out so fast and just given a booklet to read. The more I seem to Google the less I feel I understand:(

User
Posted 09 Jan 2024 at 19:27

Hi Gthomas13,

I'm sorry that you find yourself on this website, but there are lots of very knowledgeable people on here who will be able to help you much better than I can.

But it is my understanding that a diagnosis of T3 N1M0 is considered treatable, with a curative intent. 

If the cancer had spread to his bones (metastasized) then he would have a diagnosis of (at least) M1, instead of M0 ('M' standing for metastasis).

So, there is scope for optimism here.

Best wishes,

JedSee.

User
Posted 09 Jan 2024 at 20:16

Originally Posted by: Online Community Member
The cancer has spread to a nearby lymph node.

If they're saying it's a single nearby lymph node, then it can be treated "with curative intent". Treating lymph nodes that are further away can be harder but he's lucky the cancer hasn't spread to his bones.

At age 74 I was in a similar position, G9 with spread to seminal vesicles and 3 nearby lymph nodes. I was given radio therapy and 2 years of hormone therapy [Zoladex] and a year after finishing things are looking good. No long term guarantees but a good start.

Jules

 

User
Posted 10 Jan 2024 at 15:15

Sorry to hear it has spread,hopefully he gets the treatment soon and it helps sending best wishes xx

User
Posted 13 Jan 2024 at 22:25

Thank you. It's good to hear such a positive story. I hope things continue to go well for you :)

User
Posted 13 Jan 2024 at 22:26

Thank you for your positive reply. I really appreciate it :)

 
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