Prostate cancer

A support group for anyone affected by prostate cancer to come together, share experiences, and ask questions.

My dad was diagnosed with prostate cancer yesterday, Gleason Score of 9 (4+5)

KeeWi22
Posted by

Hi

I think they’ve said we’ll know the staging/whether it’s T3a or T3b after the further tests, but I may be confused about that.

I’ll update after the results x

anubis
Posted by

hi k 

i was diagnosed on the 7th jan with advanced prostate cancer , gleason 9 ( 5+4) psa 51 .

i had spread to my pelvic lymph nodes a spot on my pelvis and a rib told i was inoperable and it was incurable ! .

i was started on bicaltumide tablets straight away had my first prostrap injection after 2 weeks now on 3 monthly injections .

had a course of docetaxel chemotheraphy , now i'm on abiraterone tablets because through all that treatment i have further spread to my spine and sternum ! .

through all this i have never missed a days work ( self-employed gardener) so its quite a physical job , its not stopped me doing anything 

a lot of this is down to a positive mental attitude , right from the start i was determined to not let this horrible disease change my life for as long as i could 

i had no pain or symptoms it was just by accident it was found , i still have no pain now . 

many people can live for yrs with prostate cancer , wait for the next lot of results to see how they turn out hopefully it hasn't left the prostate .

but above all stay positive and instill in ur dad that positive attitude too , dont let cancer take over ur life or his just do everything u normally would .

hopefully there's no spread and you get a good outlook for him .

paul

freefaller
Posted by

Hi,

Just to explain an operation to remove the prostate is generally not done if the cancer has spread as it will not remove the cancer cells which have spread which will first have spread to the local area and then out. Also your Dad's age would generally preclude him from surgery which is a gruelling operation with what can be quite a long and debilitating recovery time and side effects - some of which could be permanent.  Though if he is generally very fit with no heart or lung problems, bladder and bowel problems then age would be lower down the consideration list.  When I was diagnosed at 73 it was considered I could just have the operation because I was very fit but it would affect my bladder and bowel (where I already had problems) so much - even in the short term but could be longer term that it would have to be a difficult operation and difficult recovery.  I know of one person - a neighbour who had the robotic operation at 76 but he looks around 60 and is so fit it puts me to shame as I still go to the gym 3 or 4 times a week at 75.  He recovered well and it looks like they got all the cancer - this is not always the case because small areas of cancer can be missed at operation necessitating the need for further treatment with external beam radiotherapy which is likely to cause more and worse side effects to the surrounding area of bladder and bowel as there is no prostate in the way.  Maybe with the robotic operation more older men will have a radical prostatectomy for prostate cancer which is localised within the prostate as recovery seems to be shorter and maybe fewer side effects but this is not always the case.  Another reason I did not have the prostate removed was that even though my score was 7 (3+4) was that at MRI - which was done after the biopsy - should always be done before, the tumour was pressing on the back of the prostate and there was a bulge so the T score was upped to T3 disease as the cancer could have spread.  So the best option then was hormone treatment and external beam radiotherapy which would be planned so that it could hopefully "mop up" any cancer cells that had escaped in the local area - though none could be seen as smaller areas of cancer cannot be seen.

We all know about the waiting for appointments and then waiting for results it really is the worst part of this journey and is far worse for the family and loved ones than for the cancer sufferer themselves.  Once you get the scan results in a Multidisciplinary Team MDT meeting will be held to make a plan for treatment options for your Dad.  Just hope it doesn't take too long.

To make a positive out of such a shocking experience please tell all your brothers if you have any to get a regular PSA check from the age of 45/50 as if their Father has prostate cancer they are twice as likely to get it so should be checked regularly so that it can be found early and hopefully cured.  Infact all male friends as the sooner any raise in PSA is found then they can be checked out in case it is an indicartor of early cancer which can be cured - though as you know PSA is only an indicator and needn't always mean cancer - it could be an infection and could be prostatitis and even a low PSA does not mean there isn't cancer.

Have a look at the Prostate Cancer UK website and look at their leaflets too.  You will find on there a free telephone number and you can speak to their specialist prostate cancer nurses on weekdays.  They have been brilliant with me as living where I live our hospitals are so busy I only got to speak to my cancer key worker once and managed to get e mail advice from her once.  My urologists secretary was much more helpful as her Dad had had Prostate Cancer but the specialist prostate cancer uk nurses were absolutely brilliant.  You can also e mail them or chat on line but that sometimes takes a while and I found phoning them to be better.  Also find out where your local Maggies Centre,  or other Cancer Support Group is as they are brilliant too and run lots of different courses to help the sufferer and his family through the process and always good to speak to other people going through what you are going through.

Take care

Des

KeeWi22
Posted by

Hi

Thanks so much for taking the time to reply.

Hope you continue with your progress/recovery.

Your words of advice are what we need to hear - trying to stay positive. Been today to get dad’s passport renewed so I can take him on holiday, all being well.

K

KeeWi22
Posted by

Hi

thank you for your kind and helpful words - it really is helping me get my head round everything getting all this information from people who have been through it.

its helping me speak to my dad about it and means I have something positive to tell him.

k

Seamus47
Posted by

Hi KeeWi

I was diagnosed in September 2018 as locally advanced T3a, which means the cancer was at the edge of the prostate capsule but hadn't broken out. My Gleason score was 4+5=9 so slightly less aggressive than your Dad's. A pelvic CT scan and bone scan showed no metastases so I was N0 M0. My PSA at diagnosis had risen to 15.

I started hormone treatment in October 2018 and had 20 sessions of radiotherapy in February and March this year. In mid-June I had an appointment with my oncologist and my PSA was undetectable.

Your oncologist will tell you that PCa is very slow growing and treatment regimes are improving all the time so try not to worry too much.

Good luck with your journey.

Seamus
(See my profile for more)
KeeWi22
Posted by

Hi Seamus

thanks for your response and I’m glad to hear your treatment is going well and I hope things continue improving for you.

having felt so low a couple of days ago, reading your response honestly helps me feel like we can get through this.

i’ll report back with dad’s results of the further scans as I might need more info / advice etc at that stage

Keeley

Uroboros
Posted by

KeeWI

There is a good booklet produced by Macmillan called "Having tests for prostate cancer" which gives details of all the tests, what they mean and explains staging.

You can download it from this web page as a pdf

https://be.macmillan.org.uk/be/s-671-cancer-type-p.aspx

As I suggested before you could also contact or call in at a Macmillan Information and Support Centre if you just want someone to talk to about your worries.  They could also signpost you to any other local cancer charity who may also have the facility to talk to someone and/or a support group.  Support groups are where people with the same cancer get together  share their experiences and support each other.

The link for locating a MISC is

https://www.macmillan.org.uk/in-your-area/choose-location.html#17314

or you can phone 0808 80 00 00

 CAFC EDDIE
Posted by

Hi KeeWi22, Sorry to hear about your dad, I was diagnosed almost 3 years ago with Prostate Cancer had a Glesson score of 5+4 an it has spread to my spine, ribs shoulders an both hips. I was given 3-6 months to live but I,m still here fighting. I had chemo an radiotherapy, and am now on a drug called Abereterone, which is working really well, my PSA is now down from 197 to 1.6 so something good is working. I know it,s easy to say but your dad has to try an stay as positive as possible, I really think that helps, my Dr said I was quite young to get PC as I was only 52 when diagnosed but hey it makes no difference how old you are. My wife an kids keep me busy which is what your dad must do keep as active as possible an dont sit in a chair an wallow in pity. Treat your dad no differently now he has cancer, he,s still your dad so keep happy keep laughing but most importantly keep positive. I hope I can help with any future questions but take care an stay as strong as poss. Best Wishes Eddie.

Eddie.
KeeWi22
Posted by

Hi Eddie

Thanks so much for your reply and I’m glad you’re doing so well, I hope that continues for you.

Your message has helped, I’ve been with my mum and dad all day and could see dad was getting more down as the day went on. He’s clearly feeling very hopeless at the moment so am doing all I can to keep him positive. We’re going a good brisk walk every day and I’ve got him using my small weights! We’re all also making more of an effort to eat healthily.

thanks again for you kind words

best wishes

keeley

SD1
Posted by

KeeWi22,

Hope this gives you some positivity.  In 2015 I too was Gleason 9 (4+5), PSA 38 and after the scans they decided it was T3b.  It had spread to the seminal vesicles so an operation to remove the gland was ruled out.  Hormone therapy and 37 doses of radiotherapy followed.  I was supposed to be on the hormones for 3 years but the side effects got too bad so I elected to stop after 2 years (this makes little difference to outcomes) and the PSA tests every 3 months went from 0.01(undetectable) up to 0.8(very low) over 3 tests (2.0 is the limit).

It has remained at 0.8 ever since and that will be 2 years in October now since all treatment finished.  I had a scan a few weeks ago to make sure nothing was hiding and it came back clear.  In the NHS, you have to wait 5 years before they say you are cured.  But I like to think I am cured (not always a good word on a cancer forum) so your dad has every chance of successful treatment assuming his staging remains T3a or b.  If it has spread to other organs or bones then there are many treatments available that will ensure he has plenty time for you to look after him.  Treatments are improving all the time.

And don't forget, in the grand scheme of cancers, prostate is one of the slowest growing so don't be alarmed by the use of words like 'aggressive' or 'fast growing' because in reality they are not.  This is a lowly division 3 cancer compared to Premier league ones like lung and pancreatic so there is no need to rush around or worry about a week or two's wait for a scan result.

All the best.       

Ral47
Posted by

Do try not to worry too much. I am 72 and was diagnosed with advanced prostate cancer in Lymph nodes and Bone with a psa of 1400! Yes 1400.

I was given degarelex hormone treatment straight away and this repaired the Lymph nodes in 3 days, leg stopped swelling (My only symptom, I never had water works problems). My psa is now 7 after 12 weeks and I am now undergoing chemotherapy, docetaxol with prednesilone.

It is nothing like as bad as I thought that it would be. However, I did get myself as fit as possible before chemo began whilst awaiting the scans. Brisk walking for 3 x 10 mins daily and doing floor exercises.

Do not google too much. Do as the team advise and the outcome will be positive. No strange diets or complimentaries without their advice as that could negate the chemo. I have this for life and could live ten years yet. 

Keep positive as far as possible.

Good Luck.

KeeWi22
Posted by

Hi SD1

your response has definitely given me some positivity, and in turn that helps me keep my dad positive, so thank you from both of us.

i know everyone’s experience of cancer is different but it really is reassuring to here real stories of people who are living successfully with cancer.

and I hope you are truly cured 

Keeley 

KeeWi22
Posted by

Hi Ral47

thank you for taking the time to reply, this all SLPS so much.

the consultant more or less said that chemotherapy wouldn’t be a viable option, and I understand that each case/person is different but, as you say, I’m trying to concentrate on getting dad as physically fit as he can be so that we’re in the best position to have whatever treatment he chooses that is offered.

keeley

Uroboros
Posted by

Well said Ral47