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What did your friends and family say when they found out you had PC

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Posted 9/25/2015 11:13 PM (GMT 0)
Ok, something came up in another thread that piqued my curiosity. It was the usual discussion on various treatments. But one of the guys indicated that he has heard many situations where friends and/or family urged the person to “get it out.”

For me, this was not the case at all. In fact, my close friends and close family knew I was researching the matter and would make a tx. decision. They basically made no suggestions at all, probably because they knew I was working on it. My wife did accompany me to important doctor appointments. She totally concurred with my decisions, although we did discuss pros and cons. In other cases that I’m aware of, friends and family walked on eggs and offered no suggestions.

So, what did your friends and family say regarding the big decision on what to do? Did they make suggestions? Was it “get the thing out”? Was it what we often advise: do your research and investigate? You get the idea. Let us know.

Mel
Posted 9/25/2015 11:28 PM (GMT 0)
My mom, who was in her late 80s and a retired physicians assistant as well as a patient's advocate at the time, when I told her, said "well I hope you take care of that" , then proceeded to tell me what she had for lunch. It was like I sprained my toe rather than had cancer.
Posted 9/25/2015 11:43 PM (GMT 0)
2005 - Our grown children said "What is that"? (BTW we had never heard of pc either) So, being poorly educated on the topic ourselves, we said "Don't worry it's going to be taken out and everything will be fine". Little did we know it had already spread.

Susan

2005 Husband dx at 63 yo Gleason 4+3
2006 LRP First post surgery PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo
6/19/15 Stop Jevtana PSA 63.40 CT shows left kidney hydrophenosis caused by tumor pressing on ureter and increased liver lesions
6/19/15 Start Taxotare and carboplatin
6/26/15 Nephrostomy
7/10/15 PSA drops to 9.63 after first cycle of Taxotare and carboplatin
7/31/15 PSA now 2.6 after 3nd cycle
8/21/15 4th cycle PSA 2.4 CT scan next. Great results – Kidney issues resolved, all lymph nodes reduced in size and liver lesions improved
Posted 9/25/2015 11:44 PM (GMT 0)
I didn't tell many people until after surgery. And heard no advice except one friend who urged me to get it out promptly. His father-in-law died of (intentionally) untreated prostate cancer. Not a happy memory for him

When I told a good friend - the first outside my wife I'd told - he calmly observed the vultures circling overhead - "that's not a good sign..." We had a good laugh.

Later, as more people in our town knew, I was surprised how many others had PCa - men I'd known for years. They're all doing well.

- Wilderness
Posted 9/25/2015 11:48 PM (GMT 0)
My sister..."I'm kinda bummed out about your diagnosis. "

My (ex) girlfriend..."Well, I'm busy for the next month."

My mom (bless her heart)...In her late 80's as well...Every time she hears about it it's the first time she's heard about it.
Posted 9/26/2015 12:00 AM (GMT 0)
I didn't tell anyone other than my wife until after we'd made the treatment choice, so the conversation never went there.

Although there was one weird person I met who insisted that rubbing my legs with vinegar all the toxins would leave my body and cure me of not only cancer, but also gout and indigestion...

Andrew
Posted 9/26/2015 12:08 AM (GMT 0)
That was you? Sorry, I really thought vinegar worked back then...
Posted 9/26/2015 12:26 AM (GMT 0)
Similar story. Asked my wife to say nothing, not even to the kids until I was ready. Told son first bc he is in his early 40's and I wanted him to be watchful himself. Told daughter once surgery was scheduled and only said "I am going to have my prostate removed." Did not want to scare her. Son was very cool and glad I was taking care of it. Daughter still not worried any more than if I said, "I'm having a tooth pulled." Told a few people but not many. Quite happy not telling the world. Figure there's plenty of time.

Paul
Posted 9/26/2015 12:55 AM (GMT 0)
After my diagnosis of PCa, my doctor, a Professor of Uro-Oncology at Johns Hopkins, advised me to do NOTHING!

Enroll in their Active Surveillance, program, of course.

Trying to explain to family and friends that you have cancer, and are content to nothing surgical, radiological, or chemical to stop it. Not an easy conversation, but, maybe now, a few years later, there is more public awareness of AS as a plausible course for some of us.
Posted 9/26/2015 2:37 AM (GMT 0)
Other than close family members no one new of my cancer. My wife was with me on all doctor visits and was behind me 100% on the course I decided to take. After it was all over, word got out about the cancer via my mother-in-law (who loves nothing more than not keeping secrets) but it actually was a blessing in a way because that led to me learning of many others who had prostate cancer. It proved to be reassuring because some of these men had been diagnosed as long as ten years ago. I had taken the short and dim view of prostate cancer, believing I wasn't long for this world, but to actually talk to people who had been down my path and they were still around five and even ten years later gave me hope.
Posted 9/26/2015 11:09 AM (GMT 0)
When I told my mom, she said, "don't do anything new or experimental". Note that my Dad had PC and was in an early cohort that had Cryo instead of surgery.

My kids were like "OK, what are you going to do about it?"

My boss at work was like, "I'll let you decide what you say around here. Keep me posted on your plans and we'll work around it as we need to" As I told people there I started making a list of employees from there who have had it...a surprisingly large number.

In fact, pretty much everyone I talked to was interested in what I was going to do about it, and I don't remember anyone giving me the "cut it out and get rid of it" speech. I did get a couple of comments about how they or someone they knew had it and was treated by Dr. X or place Y. When I said I was going to Barnes in St. Louis for treatment, most people agreed that was THE place to go.
Posted 9/26/2015 12:52 PM (GMT 0)
I didn't really tell too many people about my cancer but the ones that found out certainly made it a point to tell everyone. Now I just get those uncomfortable conversation where you know someone knows but cannot bring themselves to say it. It's the elephant in the room syndrome.

As for the ones I did tell, I cannot even remember what they said or what their reaction was.
Posted 9/26/2015 1:43 PM (GMT 0)
The family and friends have all been completely cool. Unbelievably supportive.

I guess I am a little different in this regard. I tell practically everybody I meet. Mailman, FedEx delivery lady (who was delivering cancer center paperwork and it turns out had just had her own cancer treatment at the same place the day before), stranger at Sam's Club, you name it. It is not that I am out fishing for a pity party, but I have come to appreciate people's inherent goodness more than before. Everybody seems kinder. Giving people the opportunity to express their compassion really makes the world seem like a better place.
Posted 9/26/2015 2:04 PM (GMT 0)
My son age 34 said "ok, so it's prostate cancer, that's not deadly, right? I was happy he reacted that way, but later, I did educate him. My daughter age 32 started to cry, but I told her the "it's not aggressive caught early, and I'll be cured after surgery" story. Hopefully that holds. My wife was her usual stoic self, and just said " please try to calm down, we'll handle it, and you'll be fine.

Aside from family, I didn't hide it from anyone, and had mixed reactions. With some, I sensed they were uncomfortable, but that was the minority, most were very supportive.
Posted 9/26/2015 2:07 PM (GMT 0)
I might add that soon after I decided on surgery, I did email my entire Department at work and let them know what was happening. Otherwise, I would be out for a few weeks and there would undoubtedly be all sorts of bzzz....bzzzzz ..rumors. This way, it was over and done with. As it was, I missed a couple of weeks, came back, and as far as my colleagues surmised, it was over and done with. That was almost 6 years ago. I pretty much missed no days since then, and now I am retired.

Mel
Posted 9/26/2015 2:24 PM (GMT 0)
We had a rather good discussion on a related side of this topic back in October, 2012, namely, "how does one tell others about having PCa." There were a lot of good points made by a lot of informed posters, a number of them relevant to what were talking about here.

It was a pretty good discussion, and I recommend taking a look at it, for another view of this:

www.healingwell.com/community/default.aspx?f=35&m=2542100
Posted 9/26/2015 2:33 PM (GMT 0)
81:

Just curious, how do you guys find these old posts.

I had thought of it, but did not know how to retrieve it.

Mel
Posted 9/26/2015 3:10 PM (GMT 0)
Mel –

When within a thread, go to the top of the thread to the blue menu bar that's located just to the upper right of the thread title. It's the one that reads:

Home Calendar Chat Search Members Help

Click on the "Search" button, which then brings up a new screen containing a search dialog box. The box operates (as far as I know) just like most other search boxes, so you can enter keywords, strings of text, etc., and then hit enter. If the search (which is run off HW software, I believe) finds hits, they display below the search box in regular index entries style.

As with usual searches, I find it helps to enter in quotes exact text from a post or thread I'm trying to find, as that usually goes right to the source and retrieves it.

All in all, it's pretty simple to use, and I have found it to be pretty effective in getting to what I'm looking for, assuming that I can remember enough text or keywords from it.

I believe there are also some help screens available (click on Help on that line and go from there, I think) for more sophisticated options.

And one or more of the mods may weigh in here, or others more skilled in this that I am.
Posted 9/26/2015 3:12 PM (GMT 0)
What, no one else got the "that's the good cancer"? Our kids and close family and friends were caring and supportive, but we did get the good cancer comments. With DH's Gleason 9 it was all I could do to continue the conversation. I know people don't know what to say and that they mean well. I try to remind myself of that.
Posted 9/26/2015 3:14 PM (GMT 0)
81:

I've tried the Search function, but I guess I got to come up with better search terms

Mel
Posted 9/26/2015 4:58 PM (GMT 0)
I did not tell too many people. One of my sisters cut me off when I was explaining the prognosis for my stats and stated very condecendinly that "it was only prostate cancer". I have not given her any updates since. One of the bright spots and totally unexpected was the reaction from an old girlfriend with whom I had remained friends after our romantic break up. She jumped right in and went with me to doctor appointments and tests at hospital and sat in on doctor consultations. If I needed anything she was right there to help. She has married and lives miles away but still sends me an occasional email to see how I am doing. Most friends and coworkers expressed concern and interest in treatment and results but I let the updates go after a while and would only respond to a direct question and then mostly say all is well.

Now I just keep it to myself for the most part.

Don

Xtandi trial last psa .97
Posted 9/26/2015 8:20 PM (GMT 0)
Other than my wife and a couple of friends who had gone through PC before, I didn't tell anyone. People mean well, but, once they know you have "C", they treat you differently. Plus, I don't want the topic of conversation to be my health every time I see them. That's just me.

Tony
Posted 9/26/2015 8:42 PM (GMT 0)
My brother said: "but we don't have prostate Cancer in our family"

I said: "we do now"
Posted 9/27/2015 3:11 AM (GMT 0)
Mel,
My wife immediately said, "GET IT OUT!". Later that evening I called each of my 2 sisters who both had breast cancer years earlier and they said "GET IT OUT!" Now I was DX with PCa for 7 hours and I have 3 of the women that mean the most to me in the world ganging up on me.

I told them to let me have some time to evaluate before I make this life changing decision. A week later I agreed with them.

I hate to say it but I am glad mom passed away 3 years earlier and wasn't around for the news. I would always be her baby and I could see her chewing her nails and worrying about everything and every PSA test I had. She, by the way died of colon cancer.

Bill from Florida cool
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