PS LEVEL 210 Advanced Prostate Cancer

User

Posted 05 Aug 2017 at 11:24

My husband has just been diagnosed with advanced prostate cancer, Ps levels were 210. Seem to be waiting forever for various tests, he has had biopsy which showed his Gleason score at 9. Bone scan showed it hasn't spread to bones but he now needs a CT scan which is booked for 26 August, another wait! They will then determine which treatment, if it has spread to lymph nodes it will mean chemo and hormone, if not the hormone. There isn't an option to,remove prostate as cancer too advanced. The on,y symptom he had was an ache in the groin area and not feeling right, so he went to the doctor, hates going to doctor or taking pills so he is totally devastated, as a family we also are and are finding it so hard to stay positive, his Macmillan Nurse is wonderful, but on hearing he may only have five years we were shocked, as she says could be much longer. He is a fit and otherwise healthy 61 year old, only thing he has ever had is two replacement hips through arthritis.

User

Posted 05 Aug 2017 at 13:51

Hello Norine and welcome to the site.

It is very very hard to take it all in at the start of diagnosis but once treatments are in place it will becoming "easier" because you will at least have some sort of control.

You've been told 5 years but as the MacMillan nurse says, it could be longer. We do have other members on here who have been diagnosed as incurable and they are still here 10 years later.

Please don't despair because you do still have a future. It will be different from your norm but it will become your new "norm"

Other members will be along I'm sure. Come back with any more questions you may have.

Take a notebook and pen (or record) any questions and answers when you go to the appointments.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 06 Aug 2017 at 01:30

My heart goes out to you Norine. I know exactly how you feel - my husband was diagnosed in March with advanced prostate cancer. His PSA was 248, Gleason 9 and the only symptom was back pain (excruciating) which was because it had spread to his bones ("all his bones" according to the consultant) lymph nodes and liver. He's 60 and we were told two and a half years was the average life expectancy. Hormone therapy started immediately and chemo a month later. From 100mg morphine a day he's down to 10mg and planning to be painkiller free by the time he's finished chemo. Like you, I'm new to all this and all I know is getting news like this is horrible, upsetting and throws you completely off balance. The only upside is that his three brothers have now been tested and they all have prostate cancer but caught soon enough to be treated. All I can say that we know advanced prostate cancer is life-limiting and we are not going to spend whatever time we have together being miserable so we're decorating the house, having weekends away together and watching as many box sets as Netflix throws as us!

User

Posted 06 Aug 2017 at 08:35

Hi Norine
I think the waiting time at the beginning is so hard. My husband was diagnosed in March this year with a PSA over a thousand and extensive bone mets and also lymph nodes. It seemed forever going through all the scans and waiting for the results. Once he started with HT his horrific pain in his bones reduced such that now he is off all pain killers. He is on Chemo having had 2 sessions so far and has mostly still been able to go to work. His latest PSA was 4.9. I think the waiting was the hardest part.

User

Posted 07 Aug 2017 at 12:05

Hi Norine

Sorry to hear your news. I am guessing you and your husband are finding things really hard. The five years will likely be a 50 probability of survival, the nurse will not have all your husbands notes and may be being conservative. The bone scan is excellent news.

My wife and I were devastated when I was diagnosed with locally advanced prostate cancer. I was immediately put on hormone therapy tablets to stop any further prostate cell growth. I had an MRI scan, a biopsy and a bone scan to determine this.

Surgery was not an option and was told that high dose brachytherapy + 15 sessions of external beam radio therapy and at least 2 year hormone therapy gave the least side effects. I had to wait at least 3 months for the tumours to shrink so there was a smaller target. It did not matter if it was 3 or 12 months until the radiotherapy as the hormone therapy stopped all prostate cell growth

It was the day after by 57th birthday in Jan 2016. It took at least 4 months for me to get some focus on other things so it did not dominate my thoughts. It may be better for your husband.

I have been told by the oncologist I have a 66% chance of surviving 10 years and 33% chance of a complete cure. I saw him within 1 month of diagnosis. I am relatively young and fit, the figures are for all age groups, so I think my odds are better than those quoted.

I found the Macmillan centre at the local hospital to be brilliant. On the day of the diagnosis, I remember the quiet and comfort of their sitting area, after the bustle of the hospital was good and the tea they offered that day was the best one I have had for a long time.

Macmillan will probably offer free counselling to you and / or your husband. I found invaluable this to come to terms with things. A sounding board for all the difficult thoughts feelings you have that you don't want to share with your husband as it may distress him further.

Take care of where you find your information. The oncologist should have the best idea of your personal situation Prostate UK main site is excellent as is Macmillan and Cancer Research UK not forgetting the NHS for generic information.

Things look pretty black now but they will improve as you get more information

User

Posted 07 Aug 2017 at 16:59

Norine, do not despair. I am living proof of a man with a similar diagnosis living with PCa for ten years and I'm not done yet by a long chalk. When you work your way through the shock, try to harness the power of positive thinking. You do both have a future and many years to savour. Make sure you make the most of your time together. Your husband is not a hopeless case. Far from it. There are lots of available treatments with more on the way every year. My advice apart from the above is for your husband to keep up his fitness levels with regular modest exercise and enjoy a balanced and not faddy diet from which you can both gain pleasure (so don't neglect the booze!). Treatments will tend to encourage weight gain so he'll need master this aspect, especially.

Good Luck.

User

Posted 13 Aug 2017 at 12:37

Thank you so much for your positive messages and your experience with this disease. It has helped a lot.

User

Posted 14 Aug 2017 at 20:27

Hi Norine

My OH was diagnosed at 61, Gleason 10 and spread to bones and lymph. He's 68 now and still going, he hasn't had any new drugs nor chemo and is just about to start radium 223. The HT with dyethylstillbetrill and some palliative radiotherapy has kept it more or less under control until recently. That's getting on for seven years, I won't pretend it's been fun as he's had to accept a supra pubic catheter due to the prostate growing into the bladder, but he's still here and we still have fun.

We've seen both our beautiful daughters married and have a gorgeous granddaughter who is the light of our lives. We did not expect any of that when we got the news. Our urologist insists that John's determination to make 70 is behind all of his excellent results so far, I've told him now that he's 68 he needs to revise that number though!

Let us know how things go

Devonmaid

Edited by member 15 Aug 2017 at 20:10 | Reason: Not specified

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