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User
Posted 18 Nov 2018 at 14:00

What a balls-up! More worry for you. How strange?

I would also make a formal complaint as someone has made a very serious error by discharging him in the first place.

In fact, I had to discharge myself from hospital following my transperineal prostate biopsy, as they detected a slight temperature rise, and wanted me to stay overnight. I felt absolutely fine and was urinating normally.

It caused a bit of a kerfuffle as the very junior doctor then in charge had never had to sign for a patient to discharge himself before, and he was unsure of the discharge protocol. He told me initially that he couldn’t discharge me with the planned antibiotics. I said “Not to worry, I’ve got broad-spectrum antibiotics at home, so I’ll use my own”. He then sought advice from a senior nurse and I was on my way home with a box of tablets.

Of course, it’s rare to find anyone senior at a hospital on a week-end, so I wonder if a Consultant toddled in on his day off, today, looked at Hubby’s notes, and said “Why the bloody hell was this patient discharged?”

I hope his hospital re-admission will sort him out. 🤞

Which biopsy did your husband have?

Cheers, John

Edited by member 18 Nov 2018 at 16:42  | Reason: Not specified

User
Posted 18 Nov 2018 at 14:32

Originally Posted by: Online Community Member

Thank you so much

I'm so scared that if it's not in the bones its in the lungs or liver. It's been such a long wait and I'm not sure if I want the results as there is at least some hope now and my husband seems blissfully unaware

I love him so much, he's always been my rock so finding it very distressing. We were so happy 

Hello,

I have some appreciation of how distressed you feel.

Husband is now 7 weeks post op and he had complications so catheter only removed two days ago! His prostate and 28 lymph nodes were removed with 1 being found as cancerous. He was T3 with a Gleason score of 3+4 changing to 4+3 after op. 

My husband is my rock too and it’s devastating to see him suffer. Some days it feels unreal and I’m not sure this is actually happening to us!

My understanding is that we have to find our new “normal”; over the next 5 years we will always be waiting for the next blood result to see if the PSA is rising and the cancer is spreading hence we will always be waiting on something and have this uncertainty.

For us it is a very slow process to find this new “normal” and it very much seems that every week we take two steps forward and one step back.

I have only posted here a couple of times and don’t visit much either but I am having a terrible day today and reading the questions on the forum helps me get some perspective.

I just wanted you to know that although it has shattered the very foundations of our life that the days do pass and over time we are slowly finding ways to get through this. For us the adjustment is taking time and it’s, as I said above, a slow process.

Best wishes to you and your husband. 

User
Posted 18 Nov 2018 at 14:36

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Thank you so much

I'm so scared that if it's not in the bones its in the lungs or liver. It's been such a long wait and I'm not sure if I want the results as there is at least some hope now and my husband seems blissfully unaware

I love him so much, he's always been my rock so finding it very distressing. We were so happy 

Hello,

I have some appreciation of how distressed you feel.

Husband is now 7 weeks post op and he had complications so catheter only removed two days ago! His prostate and 28 lymph nodes were removed with 1 being found as cancerous. He was T3 with a Gleason score of 3+4 changing to 4+3 after op. 

My husband is my rock too and it’s devastating to see him suffer. Some days it feels unreal and I’m not sure this is actually happening to us!

My understanding is that we have to find our new “normal”; over the next 5 years we will always be waiting for the next blood result to see if the PSA is rising and the cancer is spreading hence we will always be waiting on something and have this uncertainty.

For us it is a very slow process to find this new “normal” and it very much seems that every week we take two steps forward and one step back.

I have only posted here a couple of times and don’t visit much either but I am having a terrible day today and reading the questions on the forum helps me get some perspective.

I just wanted you to know that although it has shattered the very foundations of our life that the days do pass and over time we are slowly finding ways to get through this. For us the adjustment is taking time and it’s, as I said above, a slow process. It may be the same for you too.

Best wishes to you and your husband. 

User
Posted 18 Nov 2018 at 16:50

I think it was TRUS - just getting used to this new terminology

User
Posted 18 Nov 2018 at 19:12

There are some dinosaurs here who still have faith in the virtually useless TRUS biopsy, yet there are many here who having had a TRUS, end up having a second targeted template biopsy for more accurate assessment. Two lots of hassle and discomfort for the price of one!

Two friends who had experienced that same scenario told me to “avoid a TRUS at all costs”. In any event, my own Tommy the Tumour was so big that he would have been picked up on a TRUS biopsy, but then I would have run the risk of secondary infection such as your old man has suffered. They can always carry a out template biopsy with an epidural anaesthetic if there is a health risk involving general anaesthesia.

If he is back on the ward now with intravenous antibiotics, he should be back out and about soon, and looking forward to a treatment plan with the magic words: “With curative intent”

Best wishes and good luck.

Cheers, John.

Edited by member 18 Nov 2018 at 19:18  | Reason: Not specified

User
Posted 18 Nov 2018 at 19:16

Thank you, feeling a bit better at the moment.

He even has his own room!

I would love to hear the words with curative intent but given the psa level and it's in the local lymph nodes I don't think that is going to be a possibility

User
Posted 18 Nov 2018 at 19:29
You don't give up do you? About 100,000 prostate biopsies are done every year in England; if everyone listened to you and insisted on a template biopsy it would be carnage. They would have to build new theatres to cope and it would be the end of any chance of swift diagnosis and the 31 days to treatment - many NHS trusts xang neet the targets now!

Sepsis is a rare complication of any surgical procedure. Death is a rare complication with any general anaesthetic. Back damage is quite a common problem with epidural or other spinal blocks. Cancer spread by needle tracking is a rare complication of template biopsy. Infection is a known complication of TRUS but can also happen with template. Life is quite risky.

TRUS biopsy is a perfectly sensible step for most men in the process to a diagnosis; even better if they have been able to get the scan first. If we ever get to the stage of a more reliable test than PSA and all hospitals using mpMRI to the correct standard, leading to less than 100,000 men needing a biopsy then we might be in a position where the NHS could cope with offering template biopsy to anyone who prefers that option. At the minute, we are nowhere near.

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

User
Posted 18 Nov 2018 at 19:35

I had a TRUS Biopsy on Tuesday. Felt a little uncomfortable that afternoon but then had the best nights sleep in ages! Complications are rare. It is unfortunate you had a complication.

User
Posted 18 Nov 2018 at 19:38

Yes the doctor said 1% chance so very rare

The biopsy isn't to diagnose, it's more to stage and work out what type

He started on hormone tablets on Thursday

User
Posted 18 Nov 2018 at 19:41

Rooting for you, hang on in there

User
Posted 18 Nov 2018 at 19:42

Hi Gemma,

I had it in my lymph nodes and I have been told I am cured by one oncologist (I take that with a pinch of salt, but so far he is correct), and that I won’t die of it by the top prostate cancer oncologist in Britain (I believe him). And I have never felt so well.

So don’t be so despairing. Wait for the biopsy results and take it from there. And work out a treatment plan. I have just been down the pub with my mate whose PSA was 300 four years ago, and now it’s 8, following treatment. He has had no side effects or any problems with just hormone therapy.

Best wishes to Hubby, doubt if the menu and wine list in his own private room is as extensive as going private!

I was surprised at the menu choices I was offered at the Royal Surrey Hospital on the NHS after my prostatectomy. They looked rather good! I had a few snacks and an OK pasta dish during my two nights there, but I had such a dry mouth, presumably a result of the drugs and general anaesthetic, I didn’t really feel like eating. Yet I put on weight there. God knows what was in those drips I was connected to. Lucozade?

Do investigate into making a complaint as there seems to have been a serious shortcoming somewhere, and you might save someone else’s life in the future.

Cheers, John

Edited by member 19 Nov 2018 at 03:01  | Reason: Not specified

User
Posted 18 Nov 2018 at 19:43
Thank you so much. Never wanted something so bad (to be no where further away)

Also concerned about micro mets

User
Posted 18 Nov 2018 at 20:12

I am not Her Majesty's Principal Secretary of State for Health and Social Care, but in Parliamentary terms, “I would refer the Honourable Lady to my answer made a few moments ago”:

”The TRUS biopsy is as bad as we thought it was” - the number one specialist prostate cancer consultant oncologist at Britain’s number one cancer hospital, The Royal Marsden.

 “The investigators found the transperineal (biopsy) approach to be protective. Compared with transperineal biopsy, transrectal biopsy was associated with nearly 3.5 times increased odds of infection” - Renal and Urology News.

So aside from pathetic internet on-line squabbles, Gemma, I hope your man comes out of hospital very soon with a positive treatment plan in train soon afterwards.

Best wishes for the future.

Cheers, John.

P.S. Oh, and since you mentioned it before on a different thread Matron, I have found another example of a xenophobic ‘racist’ ranting about the infiltration of our National Health Service by foreigners:

https://m.facebook.com/story.php?story_fbid=2249742725096386&id=6622931938&refsrc=https%3A%2F%2Fm.facebook.com%2FChannel4News%2Fvideos%2F2249742725096386%2F&_rdr

Edited by member 19 Nov 2018 at 14:31  | Reason: Not specified

User
Posted 20 Nov 2018 at 08:42
Allowed out of hospital late last night.

Microbiotics team said the infection is quite resistant but trying another antibiotics which will be administered at home for 7 days by nurses coming in. Anything to get out of hospital.

Husband feels fine

Still haven't heard anything about results

User
Posted 20 Nov 2018 at 09:25

Let's hope that he continues to improve that you get good result.

User
Posted 20 Nov 2018 at 10:13

Very pleased your man is back home Gemma - hospitals tend to be full of sick people!

Did they shed any light on who authorised his premature discharge and who demanded his immediate recall?

Cheers, John.

User
Posted 20 Nov 2018 at 10:37
I think it was the microbiotics team who wondered why he had gone home! The consultant thought oral antibiotics would cut it but apparently not

Don't fully understand but they had to grow the bacteria to see what they could fight it with which takes time and it wasn't a simple infection

Antibiotics need to be done intravenously

User
Posted 20 Nov 2018 at 10:50
Thought so. I nearly suggested he stop at home and keep taking the tablets, but then deleted that sentence. Obviously IV antibiotics were the way to go.

Hope he gets over this current setback very soon and onto a treatment plan as soon as possible.

Cheers, John.

User
Posted 20 Nov 2018 at 15:49
Hi

I also had sepsis 2 days after the Trus biopsy, I was taken Ill at work shaking, when paramedics arrived temp was over 39, luckily my next shaking session I was in hospital, they grew culture from my blood to find right antibiotic given Intravenously and sent home after 4 days. The biggest blow came 2 days later with result of biopsy and told I had cancer.

Hope everything for your hubby works out ok.

User
Posted 20 Nov 2018 at 16:01
Thank you

Life seems surreal at the moment as he feels and looks good

 
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