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Still waiting for CT MRI and biopsy results

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 27 Jul 2024 at 19:08

HI,

I've just seen your posts and noted that you don't seem to have had much discussion with medics.  Were you  allocated a specialist nurse?.   They can be very helpful in explaining what that hospital offers and sometimes on what other patients have done.   Although this forum does that as well.

We there anything else said about treatment to the pelvic spread.  If it is just one, or maybe two lesions they could perhaps give you RT to it as well as RT to the prostate.

The psa of 10.6 is quite low to have spread.  At that level there's a good chance of it not being Prostate Cancer although it's a probability so you do get them.

You're going to see a private consultant and will need to be armed with questions.  I haven't looked at your complete posting history but have you been offered a psma scan.  That's more definitive than any other scan and the NHS does offer it.  The risk being it will find more and preclude RT treatment.   I recall that when I was diagnosed I wanted the treatment whether it had spread or not and wasn't keen on too much diagnosis.  Since then it appears that having your prostate removed can reduce the speed of spread.

Our hospital send people to another hospital for psma scans although at a psa level more than I want so I might pay for it.  It seems fairly common to pay at about £2500/£3000 or it was a year or so ago.

Being on hormones can be used as creating time if later treatment is likely.  I'd be pushing for knowing if it is a small amount of spread and if curative treatment is possible.

I'm not sure if that's helpful.   Good luck, keep pushing.

Regards Peter

User
Posted 27 Jul 2024 at 19:41

Thank you Peter lots of info there. 

We were allocated a specialist nurse and while we were waiting for the results I called her and the message said she’d reply in 6 days! 

Re medics my husband went to first appt alone and saw the white blob in and outside the prostate. She said it’s not definite but put him on hormone tablets which she said he could easily come off. So that was the start of our devastation and our grieving began then. 

The diagnosis was appalling. The Consultant didn’t know he was diagnosing until we said. He then had to hurriedly look at his screen and said it was very bad. The cancer in the prostate and a deformity on the pelvic bone. I asked what the Gleason score was (having learnt that here) he said 8 4+4. But he didn’t explain what that meant except it was bad. 

Nothing was mentioned about lymph nodes seminal or anything else. 

Re treatment he prescribed hormone injections but didn’t issue a prescription! My GP sorted it and my hubby had his first injection today. The next one will be a day after our cruise. He said he will refer my husband to Oncology and they will decide what will be done then he wandered off…

re psa 10.6 my husband had to talk the GP into referring him as the lab blood test said this score was borderline. 

So I’m interested in prostate removal slowing the spread and the PMSA scan and RT.  Maybe something we can discuss with the private consultant on Wednesday. 

Thank you

Emma

Edited by member 27 Jul 2024 at 19:50  | Reason: Forgot something

User
Posted 27 Jul 2024 at 20:21

Hi Emma,

PCUK has a number for their own nurses.  The doctor shouldn't have said it's bad.  Did he mention whether it's been reviewed by the MDT, multi disciplinary team, it should have been.  It's never good to go alone to an appointment as your brain freezes.

The NHS is very prescriptive. They follow NICE guidelines, tailored by the local consultants for the equipment they have, sometimes to keep cost down.  Although you can ask if there is equipment elsewhere.

They probably wouldn't remove the prostate because it might slow it down and would probably say it's not proven or worthwhile.  Similar with psma testing, they don't have enough scanners.  My own nurse said if I had a private scan they'd use it but they'd wait until they thought the scanner would see it. The scanners only see things that are large enough.

It's possible to frighten yourself reading of worst effects. I was told to  take each step as it comes but I like to look forward and know my options. There are people on here who've had all sorts of RT to occasional single spreads. You might do a search for Old Barry. As yet perhaps we don't know a proper diagnosis by the sound of it.

Also age and fitness can be a factor as they can give stronger treatment to younger people.

 

 

User
Posted 27 Jul 2024 at 21:09

Thank you Peter

 

Yes The consultant said there had been a MDM but he didn’t really say what was decided expect it’s bad and you will have injections and be referred to oncology. I thought that was strange because oncology should have been at the MDT meeting?

Just to check my understanding Do you think this was not a proper diagnosis?

So if we got a private scan they would limit its use because their scan can’t see it. 

They won’t remove it in case it slows it down as if that’s bad but for us it would be good. 

I’ll look at old Barry thank you. 

Emma

User
Posted 27 Jul 2024 at 22:16

I'd think Oncology would normally be there and it was decided that was the best option.  Although you should have been given more explanation I'd think.

It was probably a good enough diagnosis but the options don't seem to have been well explained.  I was given 30 minutes to discuss the what's and possibilities.

The NHS wouldn't usually remove a prostate where another option better met their criteria.

Any scan can only see a certain size. I'd think if an mri can see it a psma will be clearer, it's whether it finds more.  I don't know if they do biopsies on the pelvix.

I'm not keen on appearing an Oracle. I've read a lot and like to think that if necessary I can talk sensibly to a doctor and offer thoughts that might help form a wider view for others.

User
Posted 28 Jul 2024 at 06:23

Thank you Peter

We werent given any options. The private guy we are seeing will have the results so I’m hoping for a better explanation from him. Also hoping for his view on the best treatment options. Would like to ask him to check the pelvic area is cancer and how they can be sure of it from an image. I had breast cancer scare myself was given the leaflets, the sympathetic talk and told what it was only to find it only looked like cancer but it was benign.  Slightly worried the pmsa will show more but if way forward is to check it is cancer on the pelvic bone it may be worth it as it may change the treatment. Does a Gleason 8 4+4 usually rule out a prostectomy do you know? 

I will update after Wednesday. 

Emma 

User
Posted 28 Jul 2024 at 08:14

Hi Emma.

Yes, you can have a prostatectomy with any Gleason score, mine was 9(4+5), the reluctance to do some is more to do with how much it has spread from the prostate.

To clarify my CT scan showed bone anomalies, the bone scan suggested that they weren't cancer related. According to my records I've not had a psma scan.

Hope this helps.

Edited by member 24 Aug 2024 at 12:29  | Reason: Spelling.

User
Posted 28 Jul 2024 at 08:19

Thank you Adrian a bone scan has not been discussed but I will ask about it thank you. It’s on the list! 

 

Emma

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. 

User
Posted 01 Aug 2024 at 21:08

Hi Wedidntwantthis,

Re: Keto Diet:

I do not claim any expertise whatsoever, but according to Jane McLelland in her book "How to Starve Cancer", fat should be reduced in the diet, particularly for people with prostate cancer, as it is typically more 'driven' by fat than sugar (except in late-stage prostate cancer).  According to McLelland, most other cancers are more driven by sugar, so prostate cancer is unusual in that respect.  However, she seems to wholly endorse a low carb, low glycemic diet.  She also suggests that red wine (in moderation!) is good for prostate cancer.   

Just my two-penny-worth.

Best wishes,

JedSee.

User
Posted 24 Aug 2024 at 12:22

Hi Peter

It is 6cm on pelvic bone and 1.2cm on pubic bone. We’ve seen a private consultant who said of all the cancers Prostate is one of the better ones due to what can be thrown at it. He stated the NHS can give him everything the private sector can. We saw the NHS oncologist who gave him option of continuing the hormone injections and also having a second generation hormone or having Chemo now and leaving the second gen hormones in the armoury for later. He said clinical trials show having chemo when first diagnosed will be more beneficial than having it later. So that’s starting next week. Quite nervous about impact of chemo every 3 weeks until December.  He was diagnosed on 25th July so we are pleased he’s getting help so soon.  His psa seems out of sync with diagnosis so hope we can trust blood tests. 

How are you doing? 

 
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