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Waiting and what next?

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User
Posted 20 Mar 2018 at 18:33
Hi, My husband is 58, had PSA test as weeing in the night etc. Called back after two days with PSA of 307. On 14th Feb 2018, two weeks later saw DR in urology clinic then bagan the wait for MRI, Bone scan etc, just had a letter inviting for biopsy tomorrow . Does anyone know what all this means as we have not actually spoken to anyone since referred for scans ? Help
User
Posted 06 Apr 2018 at 19:32

KSISTER, you didn’t answer my question before - what were you told at the appointment where the PSA was 307?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Apr 2018 at 20:10

It’s not for anyone here to prognosticate about your husband’s situation with minimal information, but if I were you I would be on the phone to one of the Consultants’ secretaries in the urology department at your hospital to find out what’s going on. They tend to know what’s what, even if no one else does!

Too late now, call first thing Monday with his Hospital Number to hand. Be proactive!

I phoned my Consultant’s secretary today regarding an oncology appointment. She assured me it is all in train - much better than waiting for the (now all 2nd-class) post.

P.S. On reflection, he will have to phone up as they probably won’t speak to you because of patient confidentiality.

Edited by member 07 Apr 2018 at 07:39  | Reason: Not specified

User
Posted 06 Apr 2018 at 20:10

From what a specialist radiologist said in a lecture, standard CT scans are not great for showing PCa in the Prostate but are better for showing lymph node involvement. It is likely that those responsible for your husband's treatment want him to have this additional scan before providing a full diagnosis. Unfortunately, this does mean a further delay but could have a bearing on his treatment.

Barry
User
Posted 10 Apr 2018 at 09:18

hi tony was 5 +4and T3B at diagnosis, he had RT and was on HT for about 18 months after , since then he has been on and off HT as and when his psa was down to 0.01 . he was diagnosed in in 1996.

regards barbara

User
Posted 10 Apr 2018 at 14:49

It would be quicker and easier to download the toolkit from this website, or give them a call and order a copy to be posted to you - explains it all very well, I think?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 20 Mar 2018 at 22:19

PSA level indicated scans and biopsy were required. MRI before biopsy improves targeting of any suspicious areas. Thus a biopsy now.

Ray

User
Posted 20 Mar 2018 at 22:48

Hi, what did the doctor tell you when you went for the appointment and got the news that the PSA was 307?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Mar 2018 at 23:04

I see that you were referred for scans but it is not clear as Ray assumes whether scans were actually done or whether your husband is going to have biopsy first. It is becoming widely accepted that it is better to have scans (particularly MRI) done before biopsy because A this usually best helps indicate where to take cores as Ray says an B because it needs time before a prostate can sufficiently heal after biopsy to get a good MRI scan. However, where PSA is very high not all scans may be given.

The standard biopsy is a TRUS with between 8 and 12 cores taken through the rectum. The area is treated with a local anesthetic. It feels like being flicked by a rubber band as each core is taken. Your husband can then walk away well that was my experience anyway. It is important that he takes antibiotics afterwards to reduce the risk of infection.

Barry
User
Posted 21 Mar 2018 at 04:36

As Ray and Barry say, I would go for the MRI scan before biopsy, as this is considered “best practice” these days, but maybe they want to get biopsy results ASAP.

User
Posted 22 Mar 2018 at 22:10

Thank you all so much, yes having the biopsy after the mri and bkne scan now makes sense. He has now had all, and we had a chat with urology nurse. Looks like another two weeks till we hear more though.....sooo long

User
Posted 06 Apr 2018 at 19:10

Hi all, I am just hoping you can help. We still have no results of any tests so far, ie the mri, the bone scan or the biopsy, but have now been told my husband needs a CT scan. Does this bode well or not? Any thoughts? Please

User
Posted 06 Apr 2018 at 19:32

KSISTER, you didn’t answer my question before - what were you told at the appointment where the PSA was 307?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Apr 2018 at 20:10

It’s not for anyone here to prognosticate about your husband’s situation with minimal information, but if I were you I would be on the phone to one of the Consultants’ secretaries in the urology department at your hospital to find out what’s going on. They tend to know what’s what, even if no one else does!

Too late now, call first thing Monday with his Hospital Number to hand. Be proactive!

I phoned my Consultant’s secretary today regarding an oncology appointment. She assured me it is all in train - much better than waiting for the (now all 2nd-class) post.

P.S. On reflection, he will have to phone up as they probably won’t speak to you because of patient confidentiality.

Edited by member 07 Apr 2018 at 07:39  | Reason: Not specified

User
Posted 06 Apr 2018 at 20:10

From what a specialist radiologist said in a lecture, standard CT scans are not great for showing PCa in the Prostate but are better for showing lymph node involvement. It is likely that those responsible for your husband's treatment want him to have this additional scan before providing a full diagnosis. Unfortunately, this does mean a further delay but could have a bearing on his treatment.

Barry
User
Posted 08 Apr 2018 at 08:20

Sorry lynEyre yes I didn't answer, whoops, so the first meeting we had the Dr said its probably and has probably spread, that is when he told my Husband he would have mri and bone scan. After that he gotinvited for biopsy wherekind Dr told us wedgetinvited back in 2 weeks.after tgat time he phoned and was told by cknsultant secretary that he needed a CT scan. But nothing booked.
My husband phoned PALs friday and we then got a call for a meeting to see consultant this coming Monday.

User
Posted 08 Apr 2018 at 08:22

Sorry about all the spelling errors etc. I am using small tablet and my eye sight is rubbish ha

User
Posted 08 Apr 2018 at 08:43

Thanks all btw, yes that makes sense ref lymph nodes, I thought that would show on mri. We will hopefully find out more tomorrow. Day 53 of waiting ha

User
Posted 09 Apr 2018 at 15:53

Just to let you know, we saw consultant today. Diagnosis T3b Gleason7, hormone and radiotherapy. Waiting for CT scan now of pelvis, lungs and abdomen. Treatment starts tomorrow.

User
Posted 09 Apr 2018 at 16:32
I had CT 360 scan of my pelvis and my chest immediately after my bone scan. Doctors like to see the full picture of areas scanned in preparation of forthcoming operation. I do not know whether you have chosen RP or RT, but it is usually doctors dealing with RP who want CT 360 scans. It appears to be an established procedure at some hospitals.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.
User
Posted 09 Apr 2018 at 16:45

Originally Posted by: Online Community Member


Just to let you know, we saw consultant today. Diagnosis T3b Gleason7, hormone and radiotherapy. Waiting for CT scan now of pelvis, lungs and abdomen. Treatment starts tomorrow.



 


In the circumstances, I'd say that is a pretty good result - what a relief for you all. The hormones should bring his PSA down remarkably quickly. Did they say how long he will be on hormones before the radiotherapy starts?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Apr 2018 at 08:16

Hi, the doc seemed to suggest a couple of months on hormones before radiotherapy starts. Then seemed to suggest hormones for ever?
My hubby is a little shell shocked today.
Will have CT soon.
Dr said they could not operate as tumour is too big , all biopsy came back cancerous, he said " full of cancer".

User
Posted 10 Apr 2018 at 08:22

Also does gleason 4+3 affect prognosis? I was wondering if after radiotheray they wiukd operate? Or as it has spread to seminal vesicles does that stop any thoughts of operating? Thanks

User
Posted 10 Apr 2018 at 09:18

hi tony was 5 +4and T3B at diagnosis, he had RT and was on HT for about 18 months after , since then he has been on and off HT as and when his psa was down to 0.01 . he was diagnosed in in 1996.

regards barbara

User
Posted 10 Apr 2018 at 09:54

That is very positive, thanks

User
Posted 10 Apr 2018 at 13:02

Surgeons generally will not operate if they don't believe they can get it all - spread to seminal vesicles doesn't automatically rule out surgery but they may have been able to see from the biopsy and scans that the tumour had broken through the capsule (hence the T3b staging). Also, surgery after radiotherapy is extremely rare as the RT makes the prostate very gloopy and fragile so it is hard to remove in one piece - higher risk of leaving bits behind, nerve sparing is impossible and much higher risk of inontinence.

They really should have explained to you at the appointment why they were recommending RT rather than surgery :-(

Gleason 4 + 3 doesn't affect prognosis as much as the T3b does.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Apr 2018 at 13:33

Mmm think we have not had brilliant explanations so far. I will talk to hubby later and see if we should book a further chat with nurse to discuss further. Thanks

User
Posted 10 Apr 2018 at 14:49

It would be quicker and easier to download the toolkit from this website, or give them a call and order a copy to be posted to you - explains it all very well, I think?

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