When to tell ?

User

Posted 05 Aug 2016 at 16:34

Joined the forum last week when I was diagnosed and said hello on the Start Here section.
I have updated my profile with a bit more info.

Anyway, got my MRI results yesterday,    PCa is completely contained within the prostate, with no signs in seminal vesicles or pelvis.
The scores on the doors are therefore -    PSA 4.0, Gleeson 3+3 = 6,   Biopsy 11 cores, 1 with PCa total 1%.    All treatment options are available but recommendation from the MDT is AS or RP.   I will be getting an appointment with the Urology / Oncology clinic to discuss things in more detail before I need to make any decision.

Emotionally I think it is still sinking in that I have PCa.    Ahead of any tests and results it was a bit tense, but I actually feel OK inside maybe because we have some certainly in that at least we know it is there and we can deal with it. Lets face it, had that one core also been clear, I would only have been told " we have not found any cancer", rather than "you do not have cancer".   However, and maybe I am being naïve, but when I look at my numbers, I feel thankful.

The issue that is our biggest concern now is whether and what to tell our two sons. They are in their twenties, doing well and away from home now. One is nearby and we see him regularly, but the other is at the other end of the country and we keep in touch via Face Time etc. I feel I should tell them, but lets say I go down the AS route, and God willing, I am fit and well for many years with little or no change, I would feel a bit of a fraud having saddled them with worrying about me, and more important sewing the seeds of worry for their own futures.

Sorry for the ramble, but that's about as clear as I can explain things. I would be interested to hear particularly from anyone who has gone the AS route and how and when they told people - family or friends.

Thanks for listening!

Andrew

User

Posted 05 Aug 2016 at 17:02

Hello Andrew,

Sorry to hear of your diagnosis.

I was not in your position in terms of active surveillance being an option, but I do have two children (daughters) in their 20s with lives of their own.

Learning of my diagnosis was the worst day of my life, until I told them about 3 weeks afterwards. I did decide to take some time to get my head clear, learn about my options and make my decisions. For me that waiting was the right thing to do, I do not regret taking that time.

Also I do not regret telling them. They gave me great support, and helped me through it. I was "fortunate" enough to be able to tell them both at the same time, face to face.

Pierre

User

Posted 05 Aug 2016 at 17:11

Hi
I was not in your position either , and have had quite a rough ride of it. But my opinion ? Go AS and you and your wife can deal with it as a close couple and not worry your boys right now. Hopefully you are miles away from having to tell them. Your scores seem very positive to me forAS although I'm not a doctor. If you go for treatment things just get worse I reckon. Even if the cancer is removed. But go with medical advice I suppose.

User

Posted 05 Aug 2016 at 18:52

Hi Andrew,

We all deal with things differently. When I was told the first thing I did was to go to see my Son and tell him and then tell my Daughter. I just felt that there was never going to be an ideal time to break the news so sooner seemed better. I had a similar clinical picture to you but had a lot more positive cores so I guess you have a little more time. I was only just over three months from diagosis to my op.

Wishing you well.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 05 Aug 2016 at 19:55

Hi Andrew

You're in a position of being curable even if treatment comes with long term side effects. Your son's are not at the age to have PSA monitoring. Thus I can't see how they would gain from you telling them. However in the future you might want to ask them to consider having whatever test is available then. At that point you will need to explain why you didn't tell them at the time. Perhaps a small price to pay then rather than burdening them now?

Ray

User

Posted 05 Aug 2016 at 20:25

Hi Andrew,

In your shoes I would likely follow the route Ray suggests as long as you are on AS. However, if you decided to go ahead with surgery I would tell your sons just before the op. The risk of something going seriously wrong during the op is very small especially for somebody who is fit but there is a small risk with every operation and I think your sons would have wished to know just before rather than after the event.

Barry

User

Posted 05 Aug 2016 at 20:28

Hi Andrew

I was in a similar position but took the decision to tell my kids straight away (my daughter had been through skin cancer previously so it wasn't a taboo subject in our house)....as to the options, I knew I wouldn't have been able to cope with AS for any length of time, as it happens surgery resulted in the scores being increased to 7 (4+3) so I felt my decision was vindicated even if I do still have some side effects some 9 months later....

Duncan

User

Posted 08 Aug 2016 at 12:06

Thank you to all of you for taking the time to reply and share your thoughts. I have quite deliberately left it a few days to reflect on your thoughts and my wife and I have discussed things over and over.

There are very valid arguments either was as to whether I tell my sons or not, and as yet we are undecided. So at the moment we will say nothing and consider it again after I have had my discussions with doctors about my options. If I decide on RP then there is no doubt in my mind, they need to be told at an appropriate time. As for AS, I remain undecided, although we may be compromised there since my wife's mother and her brother are aware. They know to say nothing, but there is always a fear that it slips out, and I do not want that. We should have told no one, buy hey ho hindsight is a great thing.

Not got my appointment to see the docs yet, but hopefully within a couple of weeks.

Getting views on here is so helpful so thanks again for all your thoughts.

Andrew

User

Posted 08 Aug 2016 at 12:44

Hello Andrew

If you decide to tell your sons (we did tell ours but at 43 it was important that he is aware he will need to be checked) it doesn't have to be presented as a major thing at this stage, well not unless you decide on the operation of course.

The fact that AS is an option and your scores are so low, if you decide to tell them on the basis that other family members already know and may let it slip, then it's a question of being matter of fact about it and generally playing it down. The bigger the drama, the more serious they are going to think the situation is.

The word Cancer is a frightener to every one but you are actually fortunate that it has been caught very very early.

AS gives you time to weigh up your options and decide at leisure. My husband took a year to make up his mind and only then opted for treatment at the PSA started to rise a bit.

If, however, you are the sort to fret about having cancer growing possibly growing inside you then AS will not suit you. You are monitored every step of the way so will know when a decision has to be made.

Good luck with your choice

Sandra

*******

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

User

Posted 08 Aug 2016 at 14:40

my son is 23 years old and was in the final year of Uni when I was diagnosed. I made up my mind to tell him once he had finished his year but as he wanted us at his graduation passing out day things were fast forwarded. It turned out the graduation day was just two weeks after my op so we told him two weeks before I went into hospital in case things went wrong and I could not make his big day. To be honest it was a great relief to tell him and he took it much better than I expected. Whilst I look at him as my child he really is now a man who can cope with what life throws at him. I really don't know now why it worried me so much having to tell him.

Good luck.

Edited by member 08 Aug 2016 at 14:41 | Reason: Not specified

User

Posted 08 Aug 2016 at 17:25

We told our daughters at the end of their respective uni terms, the day after they were both home in June 14. We went to the first urology appointment the next day. Not telling them would have been awkward and raised suspicions as to where we were going. So for us the timing was perfect.

User

Posted 15 Aug 2016 at 15:55

The advantage of your sons knowing as early as possible is that they can then get the information they need and decide whether to change their own lifestyle / diet to reduce the risk of it happening to them. Our son was in his teens when John was diagnosed and is more aware now of what a prostate-healthy diet looks like. He tries to eat less processed meat and dairy, and gets lots of tomatoes, garlic etc into his diet. I felt that knowledge allowed him to make choices.

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

User

Posted 15 Aug 2016 at 18:44

Hi Andrew

As others post, plenty of good advice. It's knowing how the dynamics of the whole family interact. Also a very good question and made me think.. I've not asked my 3 'children' (2 sons in 20's) did they want to be told ? I will ask them this week face to face and post for you.

I lost my father when I was 21 in 1976 and the 'C' word wasn't discussed at all. He had PC. (see my brief Bio). So in our case, we digested the impact to me and wife for a few days. We then decided I would tell 2 sons and daughter (with have 3 children) all living away from home within the shortest time frame feasible, each informed that only 5 of us know and I would like it left that way. So left it like that, until the operation date known just after pre-op. This was a nearly 3 months later. There is as you know masses, floods of emotions and interactions with wife / partner to all take on board and absorb. We (wife and I) have only 1 parent surviving. The next 'group' (sounds awful putting like this) to inform was mum in law , my brother and sister, again face to face if possible however 1 or 2 could only be done over phone (ie live abroad) . We left this to after Christmas about 2 weeks before op (I remember it being feeling odd being visiting them over the festive period and not telling them and people commenting 'how well I look' ). If you don't give folk warning it can again be quite a shock to their system. After op, friends, other 'rellies' as and when .. if appropriate. It's an ongoing journey re. informing as everyone on here knows .. as I'm 18 months post op.. and I don't offer my PSA results to the 3 children and sometimes they remember to ask. I find it the best way to be, daughter and my sister must keep my PSA test dates diarised or have great memories because tend to come up in conversion at the right time.

Please take informed time over your own decision, even though my age and bio similar. It's a tough one, as T1c (3 + 3) is very early stage and you are in a good place. I had little choice as Gleason 4+3 and both sides and advised don't wait. So the decision wasn't difficult for us. (ie me and wife)

Is 'brachy' an option for you ?? (I didn't know about this until post op) Hope this helps.

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