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Still waiting for CT MRI and biopsy results

User
Posted 08 Jul 2024 at 08:02

Hi we are now in our third week waiting for mri Ct and biopsy results. Would the wait have been less had we gone private for diagnosis or would the same labs be used? The reason we didn’t consider it was the speed of the scan and biopsy appointments. The waiting is really difficult for us. 

We are thinking about the diagnosis and obviously want the best but how do we know what the best is? Will the NHS tell us if private can offer a treatment with a better outcome?  Do the NHS offer all the treatments available or does cost limit their offering? We've read NHS don’t treat advanced but treat symptoms. Is private the same? 

MRI showed suspicious on prostate and outside and query bony and the put hubby on Hormone tablets as precaution. Mentioned hormone injections after diagnosis. PSA was 11.5 six weeks later was 10.6. He is 65. 

Thank you everyone I really appreciate any insights  😊

User
Posted 08 Jul 2024 at 09:14

Thank you for your reply 😊I think it’s the not knowing that is so hard. Once we know what we’re dealing with I’m sure we’ll feel better. I hope you are doing well now. 

User
Posted 25 Jul 2024 at 13:41

We’ve just had the mri ct and biopsy result after our 35 day wait. Gleason 8 4+4 and spread to left of pelvis. LhRH injections prescribed in lieu of oncology appointment. 

Any insights gratefully received. Numb 😥

User
Posted 25 Jul 2024 at 14:58

Oh good idea. Face to face with a consultant at Cheltenham urology. No bedside manner he had no idea he was giving us a diagnosis. He gave us a sheet to take to GP for Lhrh to be started today if possible. He dictated his letter to gp while we were waiting. He didn’t like my questions. GP said we should have been given a prescription so not giving us much confidence so far and they will call us later with way forward. We are seeing a private consultant next week which we booked ages ago so we can get his view. It’s slowly sinking in. No symptoms having to persuade GP to refer with 10.6 psa to this. It’s hard to take in. Although since 21st June we knew mri saw suspicious in prostate and outside but no definate diagnosis. So we’ve grieved already it’s just gone to numb now. The dread of breaking it to our loved ones. 

User
Posted 25 Jul 2024 at 15:33

Originally Posted by: Online Community Member

No symptoms having to persuade GP to refer with 10.6 psa to this. 

Why? Did your hubby have any other conditions that could explain such an elevated PSA level?

I was very close to what you are suffering from now. I ended up with capsular breach. My bone scan showed anomalies which initially looked like metastasis.  Fortunately they were later were put down to arthritic conditions.  I can understand how devastated you both must be.

I felt angry and let down by the system. The NHS had made big mistakes with my treatment to which they've eventually admitted, but only after almost two years of me complaining, and forcing me having to involve Parliamentary Health Service Ombudsman.  

Mistakes will happen, but getting the NHS to admit and apologise for them is almost impossible.

 

User
Posted 25 Jul 2024 at 17:14

Honestly, I don't know. I was very anxious  during the process, and everything seemed muddled. I never really understood the difference between scans and what they meant. I knew very little about the disease or procedures at that time.

 

Edited by member 25 Jul 2024 at 23:40  | Reason: Typo

User
Posted 25 Jul 2024 at 23:43

Bump.

Can anyone else please assist the lady?

Edited by member 25 Jul 2024 at 23:46  | Reason: Additional text

User
Posted 01 Aug 2024 at 12:10

Hi 

We had appointment with private consultant who requested my husbands records so he had the full picture. Details below:-

T4

Gleason 8 4+4

cancer in prostate

cancer on pelvic muscle

cancer on pubic bone

cancer on pelvic bone 6cm

 

had first LHRH injection next one scheduled.

referred to oncology most likely for Chemo. 

Not such a good prognosis as we’d hoped. Now bringing forward plans we had for the future. 

both quite tearful when seeing friends and family despite trying to be positive. 

uncertain about booking new holidays feel long haul ruled out as don’t know how husband will be. Only symptom is pain seated due to the pelvic area. Losing a bit of weight. Quite low spirits. 

thanks all x

 

Edited by member 01 Aug 2024 at 12:11  | Reason: Typo

User
Posted 01 Aug 2024 at 12:53

Hi Emma.

I'm so sorry that the diagnosis is not as good as we all hoped for. There are several regular posters on here who are in a very similar position. They will be able to offer sound advice and support.

Hugs to you and your husband.

User
Posted 01 Aug 2024 at 14:00

Hi Emma,  That's a disappointing appointment.  A 6cm lesion is quite large.  It would be interesting to know what the size of the one in the prostate is. The psa of 10.6 seems quite low and could normally be produced by a single  one around 1.5cm with a psa of 4+4.  Mine was 1.3cm, gleason 4+4  with a psa of 9.9.  We're all different though.  

My prostate was quoted in mm not cm.  Is there any chance they said mm.  The higher the Gleason the more psa is given out.  There is a formula somewhere on line relating  psa density and gleason.

It might feel academic but seeking to refine the diagnosis might open a few more options and it can make you feel there is more you can achieve.

Another person on here wasn't keen on using diet to see if it helped. But said he might try it as it gives a feeling of some control. The diet options are claimed to perhaps slow it down. Keto diet is one, but the full thing is a bit much. 

Also I've only told a couple of people and decided I'd only tell more if things became obvious. I don't want people reminding me or my wife.  Although in theory I haven't got it but my psa has been slowly rising.

I don't know if you use YouTube but there are lots of videos about treatments and diet.  Scholz and Geo do a lot of prostate videos. Being American they often speak like cost isn't a problem whereas in the UK options aren't offered as much and the drugs often have a different name. I haven't put Dr in front of their names as the posts can get blocked.  

Let us know when you have the Oncologist appointment, regards Peter

User
Posted 01 Aug 2024 at 14:59

Thank you for your reply. I have nothing on paper yet regarding diagnosis so as you say it could be mm. Husbands psa doesn’t reflect the diagnosis and the consultant said some men’s won’t so monitoring will involve scans as well as psa tests. Re Keto I’ve used it myself in the past for weight loss so I’m familiar with it and still follow low carb but more cautious about high fat since our cholesterol over what it should be. I agree controlling diet helps as you feel you can do something yourself. We have reduced sugar, avoiding red meat, upped the oily fish, plenty of tomatoes, moved to kefir and these adjustments have reduced weight which I’m sure will help the cholesterol. I was a bit concerned though as he’s lost a bit more since being on the hormone tablets, although it could be a coincidence. Anything we can do to keep it at bay is helpful. I hope you are well Peter. 

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User
Posted 08 Jul 2024 at 08:46

Hi.

I must have been lucky. I got my first MRI results within 3 weeks. Biopsy 2 weeks later. Biopsy results after another two weeks. And that was at the peak of COVID.

When it was decided that I needed the op. It took about 10 weeks. Unfortunately it was cancelled twice, delaying the procedure a further 2 months.

I considered going private but on principle and being tight fisted I stuck with the NHS. I don't think private treatment would have been any quicker or better.

Unfortunately, as difficult as it is, you will have to get used to the waiting game.

Best of luck.

 

User
Posted 08 Jul 2024 at 09:14

Thank you for your reply 😊I think it’s the not knowing that is so hard. Once we know what we’re dealing with I’m sure we’ll feel better. I hope you are doing well now. 

User
Posted 08 Jul 2024 at 12:07

Hi

Thanks for posting.

I am on my journey currently (started with my inital GP appointment at the end of April) and my blood test result was pretty quick, MRI appointment and result also and then the appointment for the biopsy was a couple of weeks but the results too the longest - 4-5 weeks if i remenber correctly. It's not ideal having the waiting as you just want to get on with whatever treatment is needed.

I have now had my results last week and I also have had a bone/CT scan a couple of days afterwards, which I'm now waiting on results for. I can see a light at the end of the tunnel as this will now mean I'll be having conversations in the next week or so about which treatment i want to have.

Wishing you both all the best

User
Posted 08 Jul 2024 at 13:57

Thank you Steve those time lines are very helpful and I hope you receive your results soon. 😊

User
Posted 08 Jul 2024 at 17:54

Hi,

As everyone will tell you, the waiting for results is the hardest part of this journey, and the waiting time seems to vary from one health board to another. Just try and keep yourself busy and active, give yourself lots of treats and do nice things with your family. I found it really helps with the anxiety.

I’ve now finished my HT treatment and I know I am going to be stressed every 3 months because only when my testosterone comes back will I know whether it’s done its job completely. In Fife they are very good at keeping you informed about your progress, so hopefully I will be able to deal with it.

all the best,

Derek

User
Posted 08 Jul 2024 at 18:12

Hi Derek

Yes keeping busy does help and I think it’s helping to extend the waiting time in our minds instead of feeling anxiety about not hearing. I’m glad you are being looked after in Fife and hope everything works out for you 😊

 

User
Posted 09 Jul 2024 at 08:16

Hi

Sorry you have had to join this club, but I hope we will be useful to you now you are here. As the other guys have said, the waiting is probably the worst part in all of this process. Hopefully 3 weeks in you should not have long to wait. I think my biopsy results took 4 weeks from memory, but it depends where you live.

Regarding the question of private treatment, it would probably speed things up, but the range of treatments on offer should be exactly the same.

Good luck with the results, and keep us posted.

Ian.

User
Posted 09 Jul 2024 at 09:18

Thank you Ian reassuring to hear the treatments don’t differ. When I worked for financial services I remember the proton beam being available to those who went private and it took a while before the NHS implemented it. I wondered if it was the same for newer treatments for Prostate cancer. 

Regarding the wait as you say it’s the worst part. Mentally we are both feeling a bit stronger with the passage of time but dread the diagnoses. I appreciate this group thank you 😊

User
Posted 25 Jul 2024 at 13:41

We’ve just had the mri ct and biopsy result after our 35 day wait. Gleason 8 4+4 and spread to left of pelvis. LhRH injections prescribed in lieu of oncology appointment. 

Any insights gratefully received. Numb 😥

User
Posted 25 Jul 2024 at 14:03

Originally Posted by: Online Community Member

Any insights gratefully received. Numb 😥

I can feel your pain. I'm sorry, but don't feel at all qualified to advise. However, there are others on here that will be along shortly  that will have enough knowledge to give you help.

Hugs to you both.

 

User
Posted 25 Jul 2024 at 14:09

Thank you Adrian

User
Posted 25 Jul 2024 at 14:38

I wish I could have been more helpful. Whilst we waiting for the cavalry. How and who gave you the results and did they give you any future treatment plan?

Edited by member 25 Jul 2024 at 14:43  | Reason: Typo

User
Posted 25 Jul 2024 at 14:58

Oh good idea. Face to face with a consultant at Cheltenham urology. No bedside manner he had no idea he was giving us a diagnosis. He gave us a sheet to take to GP for Lhrh to be started today if possible. He dictated his letter to gp while we were waiting. He didn’t like my questions. GP said we should have been given a prescription so not giving us much confidence so far and they will call us later with way forward. We are seeing a private consultant next week which we booked ages ago so we can get his view. It’s slowly sinking in. No symptoms having to persuade GP to refer with 10.6 psa to this. It’s hard to take in. Although since 21st June we knew mri saw suspicious in prostate and outside but no definate diagnosis. So we’ve grieved already it’s just gone to numb now. The dread of breaking it to our loved ones. 

User
Posted 25 Jul 2024 at 15:33

Originally Posted by: Online Community Member

No symptoms having to persuade GP to refer with 10.6 psa to this. 

Why? Did your hubby have any other conditions that could explain such an elevated PSA level?

I was very close to what you are suffering from now. I ended up with capsular breach. My bone scan showed anomalies which initially looked like metastasis.  Fortunately they were later were put down to arthritic conditions.  I can understand how devastated you both must be.

I felt angry and let down by the system. The NHS had made big mistakes with my treatment to which they've eventually admitted, but only after almost two years of me complaining, and forcing me having to involve Parliamentary Health Service Ombudsman.  

Mistakes will happen, but getting the NHS to admit and apologise for them is almost impossible.

 

User
Posted 25 Jul 2024 at 15:46

Hi Adrian the psa of 10.6 came back labelled as borderline so with no symptoms (bum pain which gp dismissed) he had to be persuaded to refer. 

interesting your diagnosis of pelvic involvement later came back clear! That must have mucked up your treatment. I’m sorry to hear that. 

how can they categorically say it is def cancer by looking at an image? Is there another way to make sure it is cancer in the pelvis?

Edited by member 25 Jul 2024 at 15:47  | Reason: Typo

User
Posted 25 Jul 2024 at 16:15

Originally Posted by: Online Community Member

how can they categorically say it is def cancer by looking at an image? Is there another way to make sure it is cancer in the pelvis?

I'm not sure, but I was told by the radiologist that it took expertise to differentiate between arthritis and prostate cancer on a scan.

Edited by member 25 Jul 2024 at 16:26  | Reason: Not specified

User
Posted 25 Jul 2024 at 16:30

Thanks Adrian my husband had a CT scan as well maybe it was clear. 

User
Posted 25 Jul 2024 at 16:46

Hi,

I've just gone through my medical records.

On 17 October 2022, I got the results of my CT scan with contrast.

In conclusion it stated, 'Lytic looking areas in pelvic bones are indeterminate'

On 25 October 2022, I got the results from an NM whole body bone scan, 'No scintigraphic features of skeletal metastatic disease.'

Edited by member 25 Jul 2024 at 23:04  | Reason: Typo

User
Posted 25 Jul 2024 at 17:05

Hi Adrian

 

my husband had a ct with contrast so maybe we should have an NM too?

 
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