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Posted 4/13/2013 4:23 PM (GMT 0)
Hi all - I know this topic has been covered before, but I thought I'd ask for a little advice. Just got my Dx yesterday, and while it wasn't a complete surprise, naturally we're still absorbing the news. For me, the next hurdle is talking to people about what is going on - so far, only my wife and one very close friend know.

I have 3 kids, ages 19 (in college), 16 (high school) and 6 (kindergarten) - curious to know if any of you have strategies for talking to kids those ages. I've seen some info on a couple of sites - later on, I'll post links so others can find them too.

I'm also dreading telling my parents (both in their 70's and healthy) - there has been a lot of cancer in both of their family histories and they've had to deal with hearing tough news before - but never from one of their kids.

Finally...as someone who works as a freelancer, I'm probably most worried about telling colleagues and people in my industry - very concerned I will lose future work owing to a perception that I am unhealthy, etc. I know this is somewhat irrational, but I have the worry nevertheless. Curious to hear from anyone else in this position.

Thanks, in advance -

Doug
Posted 4/13/2013 4:29 PM (GMT 0)
We had a very good discussion here on the list about this very topic last October:

www.healingwell.com/community/default.aspx?f=35&m=2542100
Posted 4/13/2013 4:35 PM (GMT 0)
Welcome Doug.

I would tell my kids at least the 2 older ones. My 2 sons were older and already out of the house and one took it kinda hard. I also told my boss at the time and immediate family, father, Mother and brothers and sisters. My URO told me it might be a good idea to let my brothers know as they should get checked as well.

Ive found that most friends don't like to know...I told a few and 1 or 2 seemed interested and the others were like it was taboo and felt uneasy. Now I only tell the ones that need to know. I try not to go into much detail unless they ask....Good luck with your treatments.....are you posting a profile? ...
Posted 4/13/2013 4:38 PM (GMT 0)
Thanks for the link, 81 - very helpful. And Casper, yes I have a signature...just forgot to check the box on my post...just fixed it!
Posted 4/13/2013 4:45 PM (GMT 0)
Similar to others, I told a few people at work, since there were a bunch of upcoming appointments. Only a few people at work got the full info, others got "I will be out for a medical procedure for two weeks" as the time approached.

Some friends got all the info...wasn't really a conscious choice, sort of depended on who we were seeing and in what context.

Two days post-surgery, my partner and I did an e-mail to a bunch of family/friends, and I did a full disclosure Facebook post. For me, telling most people after my (what I hope will be my main) treatment took place was the best way. Others choose to keep it more private. But, I think children need to know some details. Maybe not specifics for your youngest, but "daddy will be in the hospital" so it doesn't come as a surprise.
Posted 4/13/2013 4:49 PM (GMT 0)
Doug,

You will have to play that one by ear on a case to case basis. Tell those that are close to you and anyone that will be affected by your absence. As for any else it is a personal decision as to how open you want to be. Some of our members tell everyone and use it as a tool to help awareness. Others I know won't speak of it even if it is brought up. There is no right or wrong way. What you do has to fit your personality and the personality of the person you are choosing to share with.
Posted 4/13/2013 4:52 PM (GMT 0)
Doug, welcome to the forum. I think you should inform your family and 2 older children as you will need their full support. When I told my 84 year old father he told me his father, my GF had PC something I never knew but should have been told.  Telling business associates is another thing. I own my business and I told several of my customers and probably saved the life of one when he got screened for PC at age 55 after I told him about PSA testing. He had PC and would most likely not have found out until he became symptomatic. This is why I am so open about my PC and screening. I did not find one case where it cost me any business, but you have to be the judge of this.  Good luck as you start your journey.
Posted 4/13/2013 4:54 PM (GMT 0)
Brooklyn, the work thing really concerns me. As luck would have it, I'm in the middle of a big project right now - without going into too much detail on my line of work, I have a unique set of skills and leaving the project in the middle would be a big deal. Worst case, news of it might spread through my industry and affect future hiring - and if I have the surgery at the beginning of June as is the current plan, I might be opening the door to some real problems later on. Postponing until the beginning of July would be better in terms of work - my doc understands and will support the decision, but he would be more comfortable getting me in sooner. A tough one, as when I get healthy and free of the disease, I'd like to have a career to come back to...
Posted 4/13/2013 4:58 PM (GMT 0)
I would tell no professional contacts/associates/partners at all. It would be a wonderful world where brotherly love prevailed but it isn't. People are not all Jimmy Stewart characters from "It's A Wonderful Life" and sometimes act "funny" over health issues. I'd go so far as to say it could cost a career. It cost me mine.
Posted 4/13/2013 5:22 PM (GMT 0)
Doug,

It's easier (and generally better) to wait to tell most people until you have something to tell them. Your wife, your partner, your very best friends -- them you can tell everything right away because there is no way to keep them from knowing and they can help you cope and they can help you plan. Ditto, for similar reasons, for your doctors. And you can tell us. We've been there and we understand, and the relative anonymity of the web makes it easier to discuss embarrassing topics here.

But, before you tell your kids you should have a pretty good idea of your treatment plans. Unless your children have had a lot of experience with a family member with a terminal illness they will probably take your treatments at face value -- you will (for example) be having an operation to remove your prostate because it has cancer, you will be in the hospital overnight and when you come home you will need some help with mowing the grass and lifting heavy objects for six weeks. Involve them in your plans but not your worries. Be all about dealing with the problem and not so much about the problem in isolation (which might make them worry).

I am not sure how many of my casual friends know I have prostate cancer. I haven't mentioned it on Facebook or my blogs. Several of my good friends know and the trick with them is similar to dealing with kids. I talk about my plans and the technological aspects (my friends are nerds to a man) and we geek out on particle accelerators and robotic manipulators and if they know about my worries its because they have figured it out for themselves (which I imagine they have).

I have kept my cards pretty close to my vest professionally. Most of the reason I have been circumspect in my social networking is that I do worry that leading edge software engineering is seen as a young man's game and I don't want to lead with my health challenges. I don't find your nervousness about that irrational at all.

Now on to more important matters: In your other thread you attributed a line to Woody Allen which is actually Groucho Marx. "I don't want to belong to any club that would have me as a member." It was the reason he gave in his letter resigning from the Friar's Club, or that is how the story is usually told.
Posted 4/13/2013 5:30 PM (GMT 0)
Doug,
I have a good friend who is a freelance mechanical engineer who has melanoma with mets. He was very open with his diagnosis with his customers, and, he believes, he lost renewal business because the customers did not want potential interruptions in service, or, the job would go unfinished because he would not survive to finish. If you weren't a freelancer, I would be open with coworkers. Being a freelancer, I would not disclose this to customers. Fair or not, in a close bid for a job, this can tip the scales against you.

Cheers,
Paul
Posted 4/13/2013 6:20 PM (GMT 0)
Just spoke to a trusted business advisor. He agreed that my concerns about work were completely valid, and all things being equal, would council me to postpone my surgery for three weeks in order to finish my current job.

Wondering what you all think about a 3 week postponement, given my stats, etc? The biggest concern is about the proximity of the tumor to one of the nerve bundles - do we think 3 weeks will make a difference? Is the risk associated with the delay worse than the risk to damaging my career (and the worry and anxiety about that potential risk)? Tough call..would love your thoughts.
Posted 4/13/2013 6:23 PM (GMT 0)
I do not see how a 3 or 4 week delay will change your outcome. You have time to get treatment and get the job done. Even with my post surgery pathology my URO told me I had a couple of years before my PC would have become an escaped the organ issue.

Terry

Posted 4/13/2013 6:25 PM (GMT 0)
Talk to your urologist. Prostate cancer is generally slow-growing. He may say that a 3 week delay is perfectly acceptable.
Posted 4/13/2013 6:44 PM (GMT 0)
Here's what I posted previously about it:

>>>>>>>>>>>>>

Well, I did open up and I'm glad I did. I teach at a University and I knew I'd have to make arrangements due to the upcoming surgery that would put me out for a few weeks. Rather than go hush...hush and have the rumor mill started, I sent an email to my Department letting them know what's up. We are mostly males in our Department.

There have been no repercussions. I've been treated great and I didn't have to keep any secrets. I also let me grown children and immediate relatives and a few close friends know. Nobody else really needs to know.

Mel

>>>>>>>>>>>>>>>>>>>>

However, all that being said, I have to add that the work situation is unique to each of us. You have to decide what works best in your situation. Frankly, it sounds like staying mum is the best deal for you, and there should be no problem delaying matters for a month.

Mel

>>>>

Posted 4/13/2013 6:51 PM (GMT 0)
@Peter - just noticed your correction on the attribution of the quote to Groucho Marx - I hate when I mis-attribute quotes, so thanks for setting me straight...!!!!! Guess I need to do my due diligence when I post quotes around here - glad to know you guys keep us on our toes...
Posted 4/13/2013 6:57 PM (GMT 0)
My husband postponed his surgery 3 weeks because of a work commitment. It would not have cost him his career if he had not postponed it, but he was in the middle of something that he wanted to complete. He had a partner working with him on this commitment, but he wanted to be there. He also said that he was not emotionally ready to have the surgery at the earlier date.

He had his surgery 2 and 3/4 months after diagnosis. He was found to have some extra-prostatic extension but clear margins in his pathology report after surgery. We asked his surgeon, when we were discussing the pathology report, if he thought the 3 weeks had made any difference. His surgeon said no - that a few months could make a difference but not a few weeks.
Posted 4/13/2013 7:59 PM (GMT 0)
It has taken you several years to get to the point you are in with PCa.
3 weeks shouldn't make much of a difference.
My surgeon told me I probably had PCa for 10 years.
I wouldn't tell anyone in your business if it could affect your career.

Bill
Posted 4/13/2013 9:52 PM (GMT 0)
I've been self employed and freelance at various times in my life and can understand your concern. However at the time of my original diagnosis and surgery in 2002 I had just returned to a corporate job. I had to tell my boss, HR, and co-workers, because there would be no way to explain my absence. If I was still self-employed, I'd have been worried as you are, about telling clients. I'd probably have told only those who absolutely needed to know and then would have been as vague and upbeat as I could get away with.

As for family, I told my daughter (who was nearly 30 at the time) and my parents who were then in their late 70s. But when I had salvage radiation a few years ago, my wife and I told only my daughter and swore her to secrecy, because I didn't want that news to get back to my mother, who has no reason to think I was anything other than completely cured by my original surgery. Most of my friends know nothing of my follow-up radiation and that's the way I want to keep it. Though when I hear of someone I know who has had a PCa diagnosis, I "out" myself and tell them about my experience and what I know of treatment options.

Jim
Posted 4/13/2013 10:02 PM (GMT 0)
Hi guys (and Bluebird!) - thanks as always for the info. Reading through my path report, it looks like one of the cores showed perineural invasion - that may be what is worrying the URO in terms of sparing the nerves on that side. I will talk to him more about it on Wednesday - but in the meantime, do you think that changes anything in terms of weighing the risks of a delay?
Posted 4/13/2013 10:42 PM (GMT 0)
Your uro is who you should talk to about a delay. It is a generally slow growing cancer. 3 weeks shouldn't make that much of a difference. I wouldn't pin myself down for 3 weeks, though. I'd add a week or two hedge time so you are not stressed out about finishing a job on time.

Paul
Posted 4/13/2013 11:40 PM (GMT 0)
Doug I was dx'd in November and treated it in March. All the doctors I consulted (seven of them) said to take my time but only two put a timeframe of not going over six months in deciding.
Posted 4/13/2013 11:42 PM (GMT 0)
I told my four children (3 of them boys) because I wanted them to be aware so they can be tested regularly. I told most of my close friends and my bible study group. I was retired when I was DXed so that was not a problem. You don't have to tell your pier group and employer if you feel it may jeopardize your work.
Posted 4/14/2013 1:03 AM (GMT 0)
I told my colleagues that I needed "abdominal surgery". Nothing more.
I told my mother the night before. If I told her sooner, she'd just worry.
My wife told my kids (ages 7, 9, 11, 13, 15) after I was out of surgery.

I'm not saying that the above is the right choice for everyone, but it was definitely right for me.

-Gedman
Posted 4/14/2013 3:56 AM (GMT 0)
As far as my family, I was totally open. At the time, my children were 15, 14, and 14(twins, not 2 mothers!). They all saw the caller ID come across, so they knew I was getting the news. My wife is a nurse who worked nights at the time. I spoke with the Dr., and when I got off the phone, my kids were gathered around me to hear the news. I said, "I have cancer." , and a loud "WHAT!!??" Came out of the bedroom, as my wife was not truly asleep. My kids asked me if I was going to die, and I said yes, in another 50 years. They handled everything great, actually better than I did. If I were you, I would be totally forthright with your oldest 2, then a little more subtle with your youngest.

Good luck,
Paul
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