First results in

Thanks John.

Yes I will continue on this one post. I just wasn't sure if it would be flagged.

Do you think waiting 2-3 weeks for a biopsy, bone scan and to start hormone therapy is a long wait? 

Thanks Healey 

I just called the specialist nurse back who advised that they can't start HT until they have done the biopsy as that will effect the figures they might need for trials, etc

I told her I was worried about PSA going up in that time and she did go and check but first appointment is the 15th November!

Has anyone had a biopsy done privately?

Otherwise she said there are several small lymph nodes within the prostate fat so hopefully they're chilling there.

Will hopefully have bone scan and CT before biopsy

4 year's is amazing on HT, long may it continue

Hi,

WeveW just an letter through the post to advise that the bone scan will be the 27th November!!!

Is this normal? Seems an extortionate amount of time being over a month since referral and then have to wait for result's. This whole thing is looking like it will be about 2 months from referral to results 

Thanks.

I just don't understand their plan, it is now well known that HT treatment is more effective when combined with chemo early on so if they start HT on the 15th November it's going to be at least another month after that before we have bone scan results so the treatments aren't running together

I'll call the specialist nurse on Monday

Just wondering I know the most common place for spread is the bone but I'm worried that with local lymph nodes involved it could be in distant lymph nodes and or organ's.

Is the prognosis worse for this?

There are at least 27 types of prostate cancer; it is essential that the medics are able to identify which type the man actually has.

Some types of PCa prefer to go to bone. Some types tend not to go anywhere but some may eventually affect local lymph nodes. Once in the local nodes, prostate cancer can move easily in the lymphatic fluid to affect the whole lymphatic system. Some types of prostate cancer (usually the rarer ones) don't like bone and prefer lung, liver, brain. 

The worst outcomes are usually for men who have soft organ mets such as brain or liver although mets in the skull or jaw tend to be fast moving. 

Men don't usually die of prostate cancer; the actual cause of death Is often organ failure due to lymphedema, or the increasing levels of toxic drugs leading to unconsciousness and then induced coma and eventual dehydration. 

Edited by member 07 Nov 2018 at 11:51  | Reason: Not specified

Early chemo is not about it starting at the same time as the HT. 'Early' means 'earlier than as a last resort in terminal cases'. Until very recently, chemo was only given when all other options had failed; it doesn't kill prostate cancer. The realisation that chemo given before the terminal stage can make HT more effective, particularly enzalutimide and abiraterone has rather changed the picture but a delay of a month to check that he actually needs chemo is wise - it is one of the kinder chemotherapies but should not be entered into lightly as it can kill. 

Gemma asked specifically about what difference soft mets makes to prognosis. 

Yes of course PCa would usually be recorded as one of the causes but the certificate will say "organ failure due to adenocarcinoma" or similar. The point I was making is that many people worrying about the end don't realise that it is the side effects of the cancer or treatment that usually cause death, rather than the cancerous cells themselves, which is why many people do have a peaceful end. 

As you rightly say, it is not relevant to her current situation but some people feel better with knowledge rather than their imaginings.  

Edited by member 08 Nov 2018 at 01:25  | Reason: Not specified

You are on the same treatment cycle(prostap and chemo) as me, albeit you are a few weeks ahead of me.

I've sent you a private message if you don't mind having a look and responding I'd be grateful.

kind regards

John (JasperM)

Thanks for the update, very reassuring to read, have a fabulous time in Italy and good luck with the scan results.

John

We've just returned from biopsy.

Bone scan is clear, just CT results to wait for. Everything crossed

Don't know whether to breathe a sigh of relereor not 

Edited by member 15 Nov 2018 at 16:58  | Reason: Not specified

I am awaiting test results so I fully understand your worry, it can be an agonising wait. Fantastic that bone scans were clear, let's hope you have more good news very soon.

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

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

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.

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