Leaving AS

Hello everyone. I feel so fortunate to have access to all the knowledge you share about our shared condition. The information out there on the internet can be very confusing and prostate cancer is not a one size fits all diagnosis. This forum has been very helpful to me- Thank You

I met with my urologist yesterday and he said that it is not unreasonable to come off of AS considering my rising PSA, a Pirad 4 found on the MRI, and my age 51. I have been on AS for a year now and not sure how well I handled it. I thought about my diagnosis everyday and some days thought about it a lot.

He initially wanted to do an MRI fushion biopsy which to me seems to be delaying the inevitable.

The biggest struggle I am having is telling my kids. Has anyone else struggled with this and do you have any advice? Thanks again.

Ray Paul, I get how you feel, it was really hard for me to tell my kids, NS they are in their 30's, I'd guess much older than yours if you are 51.
Just be honest, tell them that your getting it taken care of, and the likelihood is very high that you will live a long and normal life span afterwards. That's the truth. Explain to them that you have been on top of it so you are getting it early. They just need reassurance that you will ultimately be ok.

Wait until you know exactly what your plan is, so they aren't dealing with more uncertainty than necessary.

Good luck.

Tough one. I had to do it twice, for two different cancers.

Advice, for what it may be worth:

Tell them when you are ready, and that means you have a more or less complete story to tell.

1. This is the situation.
2. This is what I decided to do, and why I believe that it is the best course of action.
3. This is what I expect to happen after my treatment, and in the longer term.

Work out your little 'questions and answers' beforehand, so that you are ready.

Best of luck.

D

I told my 24 year old son right away since he had driven me to the biopsy appt. and knew what it was for. He and the wife visited me in hospital, he walked my Lab and did the grocery shopping for the week I was in there too.

When I got the penis pump I left it on the counter for a few days, explained what it was for and why it was/is necessary. Also filled him in on the Cialis script and why I had to take it even though I had been chemically neutered.

He was not thrilled, as his grandpa on my wife's side had PCa too. He is clear that he needs to keep an eye on his PSA as he ages since he has it on both sides of the family.

Fortunately, my children were in their 30's and 40's and we had been through worse; therefore, it was not too hard talking about my PCa. I took the approach of explaining PCa and my treatment and my odds ..... then asked for another beer.

I did use the opportunity to explain to my son the importance of his annual physical including screening for PCa. He was still dealing with some service related injuries (Navy - retired) so he laughed and said he would be sure to add it to the list!

raypaul said...
The biggest struggle I am having is telling my kids. Has anyone else struggled with this and do you have any advice? Thanks again.

Yes, absolutely. I made a big mistake here. I hope that by sharing my story, you and perhaps others who may read this thread later won't make a similar mistake.

The word "cancer" in our society has a terrible image of slow and painful deaths...an image which lingers from generations ago. Today, many people live with many cancers for years and die of something else. Yet, our first encounter with prostate cancer (even if favorable-risk, like my case and yours) often fills us with an irrational fear of death which shapes a new self-image of us as a victim.

My huge mistake is that when I told my children (they were 15 & 17) about my cancer, I was WAY TOO shortsighted about my case and wrapped-up in the drama of a new "cancer" diagnosis. I am not going to die from my 3+4 case. But I did not necessarily realize that just a couple months after diagnosis...and my doctor at the time did nothing to help me realize this, and even failed completely to suggest that I might even be a good candidate for Active Surveillance.

So, I failed completely to convey that my longevity was not at risk from this, but that I had chosen to aggressively treat it anyhow. I didn't indicate that I WAS going to die from cancer, but my mistake in hindsight was not making it more clear that I WAS NOT going to die from PC. This placed un-necessary burden of worry on my kids. I wish I had not done that. I expect that with a year of AS now under your belt, you have much better perspective of this disease. You are not going to die from PC...don't let your kids, or anyone else (including yourself) believe otherwise.

good luck

Post Edited (JackH) : 2/9/2017 8:30:35 AM (GMT-7)

Ray -

I think Tim makes a good point - take the time it takes for this news / decision to settle in.

Then perhaps think about how you would have liked your Dad to tell you if he'd had this news when you were your kids' ages.

I wouldn't assert that everything is under control - it's all going to be okay. But maybe that's me. I think you lose credibility. Maybe tell them a complete cure is likely and PCa is typically a very slow growing cancer in any case with many secondary therapies available should they be needed. Reassure them that you'll keep them up-to-date.

Mortality is what it is - perhaps we wouldn't appreciate the years we are given if they were unlimited.

I hope that once this ice is broken on this one it gets easier. And I wish you a perfect outcome of whatever primary therapy you decide.

Best
Wilderness