HUBBY JUST BEEN DIAGNOSED

Hello Julia,

What is your hubby's PSA and how old is he? 

I am presuming your hubby had a biopsy and then an MRI scan?  This should be done the other way around but still done this way at a lot of locations - I suppose in a way to save money as some men may not go on to have a scan -but if a scan is done first they can also see exactly where they need to take the biopsies from as this will show on the scan - so a bit of penny wise and tuppence foolish if the object is to save money?  This is basically what happened with me.  From one telephone call with the urologist 10 days after the biopsy to be told that it was low and could monitor to after the Scan being told that the tumour was bulging out of the back of the prostate and upgraded and necessity for treatment now.  To be honest although it was a huge shock I was glad this was seen and acted on than not seen.  Also, didn't know that if a scan is done after the biopsy the scan should be done at least 3 weeks after biopsy - if not longer so that the prostate has had time to heal from the biopsy so that the inflammation from the biopsy sites does not "cloud" the scan.  MIne was rushed in at 3 weeks and I heal quickly - but it would have been godo to know because I was pushing so hard for this scan if they had called me within days to say they had a place from a cancellation I would have gone.So, after the MDT meeting what has your hubby's Gleason and T score been put at now?  Personally,  I think it better for the urologist to say little about possible treatment other than we need a scan or further tests and the outcome from the MDT meeting to give further information.  Once an oncologist and radiologist have seen the scans and biopsies things can be different so better not to say until after that I think. 

I did not have surgery as being on the borderline age wise at nearly 73 at the time and having other bladder and bowel problems and the fact that the tumour was already on the edge of the prostate and bulging the best way forward was thought to be Hormone treatment and radiotherapy.  This was completed two years ago this week and since then my PSA has been undetectable. So seems a cure as first voiced by oncologist.  I did also change hospitals - though it was difficult here in Wales but I had to do it to try and avoid collateral damage from the radiotherapy to my already damaged bladder and bowel and did this by going to another Cancer Centre and having a private consultation with a rad.onc who uses fiducial markers (three gold seeds implanted in the prostate to help target the radiotherapy beams.  I don't know how this great Doc managed to get me transferred but he put up a special case to my area NHS to have me transferred to his for the duration of my treatment.  I am glad I did.

I suggest you contact Prostate Cancer UK or look on their website and either download their Prostate Cancer Toolkit - a bunch of pamphlets to read at the time of diagnosis or telephone and ask for them to be sent to you and also telephone their specialist nurses - it is a free phone number and they were absolutely marvellous - far better than my designated "key worker" who I could hardly ever contact to ask questions of - obviously in the NHS they are overworked and have other roles as well so having the specialist nurses on the Prostate Cancer UK helpline to talk to was absolutely marvellous.

All the best and I hope your husband gets good care from the new hospital.

Des

Hi Julia

Sorry to hear about your husband

There are a few who have gone through what may happen to your husband, I can definatly say, that whatever you decide he will be in very good hands, as they have done this type of procedure many times.

Its unfortunate that they were not more explicit explaining about his condition and the operation, we have had a few people who have had the same said to them.

Because he is not a high risk you have time on your side, please try and stay positive it will come right for him, have they given him any hormone tablets ?

Take care

Joe

Hi Des

Hubby is 59 and been told because he is 'young' this is the better option where as if older it would be eventually natural causes rather than the Cancer that get's him!

He had two PSA's done and this was only done because our local chemist suggested it when she was doing a drug review. They were both on the high side of normal for age...so both under the 4 level, but the GP wasn't happy so was referred.

The whole scenario has been a nightmare, we have no faith whatsoever in our hospital, having failed my Mum in 2017 and she ended up dying horrendously with Ovarian Cancer, having been told by her Consultant, 'what was my problem, she only has a cyst!'...she was dead 10 days later! 

We received the appointment date and then one for a MRI. Then had a full biopsy on 5th January, which was awful as the Doctor he saw before going to theatre said 'this is to determine how bad the cancer is and exactly where it is located'...bearing in mind no one at that point had even mentioned this! He was stunned and in complete turmoil and so it continues. The communication is appalling and the lack of information is even worse.

As far as we are aware, following yesterday's appointment, nothing has changed , they only act as middle men were surgery is concerned and we are going to another hospital to see the surgeons thank god....hopefully this experience will be better and with better patient care and sympathy!

Have scoured the entire internet for information....bad habit as used to be a Medical Secretary and my Hubby is a Medical Engineer....but both of us care about other people and no one should have gone through what he has so far....so have raised a formal complaint to make sure it doesn't happen again!

As yet no key worker put in place, can only assume this is done if he has surgery. He has Atrial Fibrillation and just been diagnosed with Type 2 diabetes, not sure he can cope with anything else ha ha....

Thanks for your good wishes though.

Julia xx

If he doesn't like the idea of the operation you could ask if his condition would be suitable for RT. My husband was offered a choice and went for RT because it is less invasive, there are possible side effects from both, which you would want to discuss.

As said above although it's not good to have the possible treatment plan changed on you without warning (it happened to my husband after his cancer recurred) at least it means they have been thorough and revised the decision before anything got worse. Better to know, even if the news isn't what you would hope for.

Hi Joe

Will try to stay positive and strong....what else can you do?

Although not high risk, they are looking at doing it in the next couple of months.

Nothing else in place until we see the surgeons at the other hospital, fortunately they have a brilliant reputation for this type of surgery. The down side is we know someone who had it done and he was in a terrible state afterwards and he cannot get that out of his mind!

Like you many medical issues. Just diagnosed with Type 2 Diabetes, Atrial Fibrillation (heart condition) and had two operations at Harefield for this, asthma, hypertension the list goes on.......joys of getting old ha ha!

Thanks for the good wishes though

Take care

Julia xx

Hi

Only the one choice now....surgery. Since the mdt meeting it all changed and they feel this is the only option for him now.

This only happened because the Surgeon from the other hospital was at the meeting and disagreed with his Consultant and his teams findings.

As you say, good from one point of you, but devastating at the same time!

Hi Karma21

Ive just read through your story. You and your husband have had a rotten start to your journey with cancer. I’m not surprised your husband has been in turmoil. Being diagnosed with cancer is bad enough without all the clinical complications you’ve had.

Im pleased to read that the surgeon is in there batting for you and that you now have a treatment path.

I wish you both the very best, and that your husband can be rid of this terrible disease. 

Hi Karma

all I would add is that if you are seeing only surgeons then that is the route that u will be steered down.

Its def worth looking at Radiotherapy especially as its near the border.

Could be worth getting a second opinion privately (about£200) just to be sure that what u are

doing is right,

Steve

Hi 

yet to meet the surgeons....so not sure whether he will be batting for us or not lol!

Totally agree not a good start to our journey but hopefully at some point this will change.

Many thanks for your good wishes

Hi Steve

Radiotherapy was discussed but not an option. They said because of his age, in the long term it could do more harm than good and he could end up with Cancer else where as one of the side affects.

Once we have seen the Surgeons we will look at our options and like you say go privately if necessary!

Julia xx