Dad diagnosed, prognosis not great

User

Posted 10 Nov 2016 at 19:49

Original post didn't show up in the forum, so hopefully this isn't a duplicate.

My dad was diagnosed with prostate cancer last week, aged 56, and got more info today. Prognosis isn't great: Gleason score of 9, PSA 12.3. It's spread to the local lymph nodes but not to the bones. The consultant urologist said that the lack of bone spread is "very good news", and that "we're not talking about 'life expectancy' yet" - but the numbers aren't good, I think. (Although the doctor also said that "the PSA could be worse, I saw a guy with a PSA of 1000 this morning").

He has a follow up appointment next week to discuss treatment in more detail, but the doctor thinks that radiotherapy is likely. He was put on Bicalutamide 150mg last week.

I don't know what to expect, I'm scared and upset. I don't know what feels worse: the prospect of him dying in, perhaps, a couple of years - or everything that comes before that. He's had mental health issues in the past and I worry that this will trigger a relapse in serious depression. And I don't want him to be in pain.

It's not about me, I'm not the one who's sick... but what do I do now? How can I be a supportive daughter? Should I just do business as normal - go to work, see my friends? It seems disrespectful to just pick up and get on with life, but that's what I'm being told to do.

User

Posted 10 Nov 2016 at 21:43

Well I certainly don't think it is disrespectful to get on with life and his prognosis is probably better than you are imagining right now. Dad's PSA is higher than normal but we have a member here who had PSA of 13000 on diagnosis and is still here some years later. Generally, prostate cancer is not fast moving so with spread to local lymph nodes but no other mets your dad could still be here for many years and the fact that they are considering whether to offer curative treatment suggests that it isn't as bad as the impression you have gleaned.

The best thing you can do for dad's mental health is to find facts rather than scaring yourself - and him - with google. Order the tool kit from this charity (number is on the home page) and read it before next week's appointment so that you are well informed when they start talking about the different treatments being considered.

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

User

Posted 10 Nov 2016 at 21:46

Thank you. I have to say, just knowing this forum is here and reading the posts has been informative and comforting. I'm going to suggest to my dad that he joins, if he wants to.

User

Posted 11 Nov 2016 at 02:06

It may be that your Dad does not wish to become personally involved, many men don't and are even reluctant to have detailed talks about their situation with family members. Should this be the case, you could seek information on this forum and members will do their best to help. We have many family members representing men in this way. I would think that Dad would not wish to see that his diagnosis is causing you to make changes to your lifestyle. Furthermore, it is best if he and his family carry on normally as far as possible and thereby lessen the impact PCa on all. Learning about PCa in general and Dad's situation in particular can help all concerned come to terms with this disease.

Barry

User

Posted 24 Nov 2016 at 21:36

Hello again,

So we have some more news now, as my dad got his letter from the hospital to confirm his diagnosis in writing. However, we are still waiting on an appointment with an oncologist (rather than a urologist) to outline his treatment plan and to get some more specific information on his outlook.

As I mentioned in my post a couple of weeks ago, he is Gleason 9 (5+4), PSA 12.3. The letter confirmed that he is T4 N1 M0. So, no metastasis at this point, which is a relief. He's taking things quite calmly so far, and I'm proud of him for being so composed, because I feared he might break down over it.

Can anyone clarify how we should be defining his cancer? (Not that it changes his outlook, but for better understanding of his likely prognosis). On the one hand, I understand that his TMN score should be defined as 'locally advanced' rather than advanced; on the other hand it's also defined as Stage IV? These different concepts seem to have quite different average survival rates. I know an average is only an average... but I'd be grateful for insight into how to interpret this.

User

Posted 24 Nov 2016 at 23:19

Hi Whiskers, whether dad is advanced or 'locally advanced' will be determined by whether or not the affected lymph nodes are in the immediate pelvic area, which I guess you don't know at the minute. Either way it doesn't tell you anything really about his prognosis - we have members here who are 10, 13 or more years on from a T4 diagnosis and others who are diagnosed with a T2 and sadly have died within a couple of years. It will all come down to which type of prostate cancer he has (there are at least 27 different types) and how well he responds to HT

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

User

Posted 27 Nov 2016 at 23:35

Hi Whiskers,

Do what you heart tells you. Also see post http://community.prostatecanceruk.org/posts/t12261-Biopsey#post152877 re. the prep for meetings from Craig and others.

This is a complex unique journey for the extended family and friends. Everyone deals with life changing news (whether cancer or something else ) so so differently. What does Dad want ?

From your profile, it appears to have happened in a very short time frame, again massive impact to absorb. I had the wonderful support and consistency of my wife, ie basic things, like parking car etc. going down the right corridors and keeping me 'busy' whilst waiting to be called. To answer some of your questions : Unless you ask specific questions; the NHS response seems to be, only provide the bare minimum of information, so as others have said, prepare. Note : I was dealt with by NHS extremely well. We have been very fortunate with our consultate, he rang my wife up immediately after my surgery, whilst I'm in recovery and gave her a complete update. Again no idea if he does it with all his patients. Reading other posts on here, some folks have been treated quite coldly. Simply engaging with the 'NHS' processes can be quite challenging. The key to your Dad, is to clarify the best possible outcome obviously, it's quite a steep learning curve for all. I only joined this forum after my op in Feb 2015 and still learning a great deal.

When my dad had his RT sessions way back n 1976 I was the one who took him (by car 35 miles round trip) and sometimes my sister on the first few visits . To be brief:- one day mum said, "Can you take him all the time". So I took time off work. (My employers were fantastic and I also worked shifts) It was only afterwards and I chatted to dad in passing. The reason : my sisters driving and general lack of organisation getting there and back !. Me chatting to sister later : she wasn't that comfortable taking him either. I had a great relationship with dad, and still have with my sister who is still alive (Incidentally yet seldom drives at all now !)

Obviously treatments have moved on massively in 40 years. He often came back very exhausted and nauseous, I can only assume my driving was a tad smoother maybe. These were defining moments in my life at this time in many ways, all the simple stuff you take for granted, this was a special time that I cherished with him. He never mentioned the C word, ever. I guess he was just Dad and didn't want to worry his young son and just out of nappies. Moving to 2014, I asked my 3 children (all over 25 now) how do they want to be updated re. my health. It all sounds so prescriptive, eh ?

To answer another point you raised re. Depression. They will be a local Prostate support group local to yourself, which often provides excellent support at all levels.

All the very best

Gordon

Edited by member 27 Nov 2016 at 23:52 | Reason: Not specified

User

Posted 01 Dec 2016 at 06:48

Hello Whiskers

My hubby was diagnosed with TB3 at the age 50, 9 years ago now, he had radiotherapy, Bicalutamide 150mgs and a TURP, had a gleason score 9.

I was really scared for his future at his diagnosis. Prostate cancer tends to be slow growing and there is a variety of drugs they can use to stop or slow down the disease.

Everything seems to take so long at diagnosis and the emotional stress of it all is awful, but there is a lot of hope

sending hugs

Jools

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