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

Notification

Error


My dad has just been told he has Prostate cancer

User
Posted 16 May 2019 at 12:44

I don’t really know where to start here but desperate for some advice or kind words from people who are in or have been in similar situations. 

 

My dad is 59 and has recently been diagnosed with prostate cancer. His PSA was high and so he had an MRI and biopsy giving him a Gleason score of 4+3. The doctors are more than confident that the cancer is localised and hasn’t  spread beyond the prostate due to the biopsy and MRI results but he is still being referred for a bone scan which apparently is ‘routine procedure’ before suitable treatments can be discussed. 

My entire family is beyond devestated and shocked. You never think something like this will happen to someone you love. My dad is desperate just to have the surgery and move on from there. But we are still worried something sinister might show up on the bone scan. Has anyone been in a similar situation whereby doctors sure cancer hasn’t spread and MRI clear but then bone scans show something different? I’d really appreciate if anyone has any similar stories and what has happened post surgery. Thank you 

User
Posted 17 May 2019 at 14:04

Hi,

Read your post and it certainly struck a cord with me.  I am 59 and now 5 weeks post RARP and beginning to get back to normal after the op.  Almost fully continent, exercising every day, stomach wounds almost fully healed and beginning to enjoy life again after a difficult few months.  Have the all important first PSA results meeting with the surgeon in three weeks time, so fingers crossed.

Never had any Pca symptoms so this whole journey has been a shock.

This web site / forum has been so helpful and some of the regular contributors are a mind of fantastic information.  Get your Dad signed up and he will soon become very well informed and understand he is only one of many many men on this difficult journey.

I have now made six or seven good friends in the last few months we have had or have got Pca and it has given my life a different perspective.  There are many positives that can come from this difficult condition.

As a result of this cancer my wife and I have just sold our house, cleared a small mortgage , banked some valuable funds and are going to enjoy doing some things we would not have done if I had not been diagnosed.  It has made us plan our next 10 / 15 years (hopefully) as opposed to just getting old and drifting through life.

Good luck to your Dad and his close friends and family.  Don't let this crappy disease define him.....make him see it as something that will improve his life and relationships and ensure he remains in a positive state of mind.

Lots of love and good luck.

 

Steven

User
Posted 17 May 2019 at 08:22

I think they are just doing bone scan as a routine one hopefully it will be very nerve wrecking for you but you have to stay positive my husband has just had his removed 8 weeks ago and he has just had psa 0.1 so doctor is 100 percent it’s all gone so hopefully it will be the same with your dad keep your chin up and there is always people on here to talk to and will help with questions if they can this forum and the cancer uk forum really helped me with advice hope all goes well xx

User
Posted 19 Jun 2019 at 20:55

Hi everyone 

just thought I’d give an update on my dad. Got the results of the bone scan, all clear thankfully!!!! Dad was offered RT or surgery and has opted for the surgery. Surgeon has said he is going to remove the nerves on one side of the prostate and hopefully leave the ones on the other (is this normal??) he also mentioned something about needing to check the lymph nodes when he was doing the surgery to be certain there was no cancer present even though nothing showed up on MRI so hopefully that will be fine. Surgery is 1st July so very quick turnaround. Hoping for speedy recovery, does anyone have any tips?? 

Show Most Thanked Posts
User
Posted 16 May 2019 at 13:09
Click on my nom-de-plume ‘Bollinge’ and you will see my story, and the same goes for others here.

Maybe you will create a similar profile for your father.

Gleason 4+3=7 is classed as intermediate cancer and is usually curable like mine was. l suggest you order the information-packed ‘Toolkit’ folder from this website.

It’s definitely not the end of the world, as many men here will attest to.

Best of luck to Pop.

Cheers, John.

User
Posted 16 May 2019 at 13:26

Thanks so much for responding. His PSA was roughly 8 were just anxious to have the bone scan come back and confirm that is is clear.  Keen to get some sort of treatment path decided and go from there. Thank you for your kind words 

User
Posted 16 May 2019 at 13:32

I think everyone has a bone scan onece cancer has been found.
It's not any hint or suggestion that they think it's spread, but they do need to rule that out.

User
Posted 16 May 2019 at 14:49

Daddy’s PSA is not ‘high’. My mate who I was with yesterday was 300 odd when diagnosed a few years ago and is down to 18 now with tablets, I think the record is in the thousands!

I am sure Dad will be offered a treatment plan ‘with curative intent’, and should be out of the woods within a few months. Do get that information pack, and come back here anytime with any further questions.

Cheers, John.

Edited by member 16 May 2019 at 14:53  | Reason: Not specified

User
Posted 16 May 2019 at 19:08

Thank you so much!

User
Posted 16 May 2019 at 19:21
For men diagnosed with what is thought to be localised prostate cancer, the issue of bone scans is a post code lottery. Some NHS areas give every man a bone scan after diagnosis, while others only do a bone scan where there is reason to suspect spread. Since they are already talking about the possibility of surgery, they clearly don’t suspect bone mets so it seems in your case to be routine.

Bollinge is correct; the highest PSA we have seen among members of this forum was 13,000 and my husband’s urologist once had a patient with a PSA of 160,000! In contrast, we have seen men with a PSA of just over 3 who had mets. The PSA indicates a problem but isn’t always a reliable measure of how serious the problem is.

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

User
Posted 16 May 2019 at 21:34

I wonder what the highest is without mets?

The highest I've heard of without mets was 130 IIRC, which was my GP's father.

I don't know what the staging was, but I presume it was confined. He had an op which I've never heard of which consisted of vacuuming out all the prostate cells, but not touching the urethra, so there's no incontinence issue afterwards. I don't know which country it was in, but not the UK. As far as I know, it was a success.

My GP told me this when I said to him I'd never heard of anyone else as high as 57 (mine) without mets, at a point when I was still waiting to be checked for mets.

User
Posted 17 May 2019 at 00:00
The highest I can remember on here was around the 120 mark.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 May 2019 at 08:09

Thanks for replying. I guess our concern at the minute is the bone scan. The doctor said he isn’t expecting anything to show up but still nerve wracking until we get the results. If MRI was clear is that a good indication bone scan would be or are they not linked? 

User
Posted 17 May 2019 at 08:22

I think they are just doing bone scan as a routine one hopefully it will be very nerve wrecking for you but you have to stay positive my husband has just had his removed 8 weeks ago and he has just had psa 0.1 so doctor is 100 percent it’s all gone so hopefully it will be the same with your dad keep your chin up and there is always people on here to talk to and will help with questions if they can this forum and the cancer uk forum really helped me with advice hope all goes well xx

User
Posted 17 May 2019 at 09:05

The MRI scan will have been just the pelvis area, and concentrating on prostate, and the tissue nearby such as seminal vesicles, lymph nodes. It's a special type of MRI called multi-parametric (mpMRI) which is optimised for detection of changes in soft tissues. It will include the lower spine, pelvis and top of the femurs and they would have commented if they saw significant changes in these, but it's really for checking the prostate and other soft tissues.

The bone scan is whole body, and works a completely different way. They inject a tracer, wait a couple of hours for it to be attracted to any bone mets (or more strictly, faster growing areas of bone, so it also identifies any healing bone fractures), and then you lay on a table while several cameras do one slow pass up your whole body (takes about 40 mins) and can see where the tracer has concentrated. It's not noisy or claustrophobic, if that's any concern. The tracer is radioactive (which is how the camera sees it through you body and clothes) and you need to avoid getting very close to children and pregnant mums for 6 hours or so, until it's decayed away.

Sometimes a whole body MRI scan is done too, but not at the first stages of diagnosis. This would be if they suspect distant mets for some reason which other scans have not been able to find.

User
Posted 17 May 2019 at 09:21

Originally Posted by: Online Community Member

.....my husband has just had his removed 8 weeks ago and he has just had psa 0.1 so doctor is 100 percent it’s all gone...

I hope his post-operative PSA is <0.1, “undetectable”. If it is 0.1, he still has a problem.

Cheers, John.

User
Posted 17 May 2019 at 10:03

We had a brief talk on this at the Mount Vernon support group on Wednesday.
The consultant said the high resolution PSA tests (I guess that's the two decimal places version) were for patients after RP, and were unnecessary in other cases. This was in the context of, if you are asking your GP to do the followup PSA tests, they need to be the high resolution tests if you've had a RP. (If the hospital/consultant is requesting them, they will know this anyway.)

User
Posted 17 May 2019 at 11:01
As I have said here before, many times, my billion-pound super-hospital’s lab here only tests down to 0.1 anyway, so <0.1 is classed as ‘undetectable’.

I have spoken with one urological Professor and two consultant oncologists about what they call super-sensitive assay, and they all agreed it causes more trouble and worry than what it’s worth, but the one oncologist said it might be of use in rare cases post-prostatectomy.

Cheers, John.

User
Posted 17 May 2019 at 12:38

That’s reassuring to hear. How did he recover after the operation? Any tips? We have read some of the side effects can be pretty bad 

User
Posted 17 May 2019 at 14:04

Hi,

Read your post and it certainly struck a cord with me.  I am 59 and now 5 weeks post RARP and beginning to get back to normal after the op.  Almost fully continent, exercising every day, stomach wounds almost fully healed and beginning to enjoy life again after a difficult few months.  Have the all important first PSA results meeting with the surgeon in three weeks time, so fingers crossed.

Never had any Pca symptoms so this whole journey has been a shock.

This web site / forum has been so helpful and some of the regular contributors are a mind of fantastic information.  Get your Dad signed up and he will soon become very well informed and understand he is only one of many many men on this difficult journey.

I have now made six or seven good friends in the last few months we have had or have got Pca and it has given my life a different perspective.  There are many positives that can come from this difficult condition.

As a result of this cancer my wife and I have just sold our house, cleared a small mortgage , banked some valuable funds and are going to enjoy doing some things we would not have done if I had not been diagnosed.  It has made us plan our next 10 / 15 years (hopefully) as opposed to just getting old and drifting through life.

Good luck to your Dad and his close friends and family.  Don't let this crappy disease define him.....make him see it as something that will improve his life and relationships and ensure he remains in a positive state of mind.

Lots of love and good luck.

 

Steven

User
Posted 17 May 2019 at 15:50

Originally Posted by: Online Community Member

We had a brief talk on this at the Mount Vernon support group on Wednesday.
The consultant said the high resolution PSA tests (I guess that's the two decimal places version) were for patients after RP, and were unnecessary in other cases. This was in the context of, if you are asking your GP to do the followup PSA tests, they need to be the high resolution tests if you've had a RP. (If the hospital/consultant is requesting them, they will know this anyway.)

 

That may be true of the lab that this particular urologist uses, but will not apply to other members here. 

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

User
Posted 17 May 2019 at 16:01

Hi Steven

thank you so much for your words. I showed your post to my dad and it really gave him a lot of comfort. It’s so nice to know that others are going through the exact same thing. Would you mind me asking what your original gleasing score was and how long you waited for the surgery appointment? 

Were very eager to just get the bone scan out the way and move on to treatment options. The diagnosis is a massive shock and I must admit the main thing which we are all really struggling with is thinking ‘my dad has cancer’. I wish we could just fast forward the next couple of months!! Your outlook is fantastic. 

I hope your PSA results go okay. Thanks again. 

 

 

User
Posted 17 May 2019 at 16:12

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

We had a brief talk on this at the Mount Vernon support group on Wednesday.
The consultant said the high resolution PSA tests (I guess that's the two decimal places version) were for patients after RP, and were unnecessary in other cases. This was in the context of, if you are asking your GP to do the followup PSA tests, they need to be the high resolution tests if you've had a RP. (If the hospital/consultant is requesting them, they will know this anyway.)

That may be true of the lab that this particular urologist uses, but will not apply to other members here. 

Well, this was in the context of patients who are getting their PSA tests done by different labs than at the hospital.

I just looked back at all mine, and they're all to 2 decimal anyway (analysed at Luton & Dunstable Hospital path lab), so maybe that's all they do there even when not strictly required. My initial charity funded test has no decimal places, so presumably a cheaper analysis. I spoke with a different charity just recently, and they get their PSA analysis done for £4 each - those may be no decimal places too.

 
Forum Jump  
©2025 Prostate Cancer UK