Our friends reactions to the diagnosis of PC.

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An38
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Date Joined Mar 2010
Total Posts : 1148
   Posted 8/18/2010 2:36 AM (GMT -6)   
Hello all,
 
Just wondering how your close friends reacted to the diagnosis of prostate cancer.
Most of our friends have been very supportive. We certainly feel like we are surrounded by a group of people who care about us.
 
Our very close friends who live around the corner have not invited us to their house ever since the diagnosis, and make uncomfortable jokes about the cancer, try to minimize it ("oh, I thought that the surgery would take 3 days to get over, not 3 weeks"),  thought the skin cancer was even funnier ("what are you doing to him?"), and when I said that this was something that really upset us, they didn't acknowledge this. Also said that we were neglecting them because we hadn't called.  
 
I'm more puzzled than upset. These are normally thoughtful and fun people. This must be how some people react to news of cancer? Have you had this type of reaction too?
 
An
 
 
Husband's age: 52. We live in Sydney Australia.

In 2007 my husbands PSA level was 2.5.
In Feb 2008 it was 1.7
In Oct 2009 it was 3.67 with a free PSA ratio of 27
In Feb 2010 it was 4.03 with a free PSA ratio of 31.
In June 2010 it was 2.69

DRE normal.
Biopsy 28/4/2010: results, negative for a diagnosis of PC however 3 focal ASAPs on left side of prostate at base, apex and at transition resulting in the conclusion "...small acinar proliferation is suspicious but not diagnostic for prostatic adenocarcinoma."
Review of biopsy by experienced pathologist, results,
1 out of 12 core diagnosed with 10% of Gleason score 3+3 cancer (left transitional)
1 out of 12 cores with ASAP (left apex), suspicious but not diagnostic of cancer

Next steps: Nerve sparing RP on 20th August 2010.

My husband's maternal grandfather died of prostate cancer at 72. His maternal uncle died of prostate cancer at 60. Because he is the third generation to be diagnosed he has hereditary PC.

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 8/18/2010 3:35 AM (GMT -6)   
Some people are ignorant/clueless and or insensitive.
 
You either ignore their stupidity or educate them head on.

Age 55 - 5'11" 215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6
06/25/08 - Da Vinci robotic laparoscopy
05/14/09 - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 8/18/2010 4:46 AM (GMT -6)   
An-
- so sorry here your "very close friends" and their bad choice of humour..
- could be a fear reaction as if seeing it occur to themselves as they grow older ...
- maybe you thought you were very close.. and to them, you were just neighbours?... just second guessing ....

- when my mother was diagnosed with cancer back in 1974, some of her close friends refused to hug her since they thought of cancer as a virus and they could catch it....
-maybe this would be a good time to do the advocate routine and educate them - and if that is of no benefit... I am sure you could find some very close friends in the supportive ones you have already...

hugs
BRONSON

p.s. you have a lovely country - my sister moved there, married, and lives in Hillsdale near Sydney.. and my mom moved there too recently and lives in Merimbula, NSW.
Age: 54 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB - hooorah!
Next PSA: October 8, 2010 -TBA

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 8/18/2010 5:03 AM (GMT -6)   
Usually, rather than being malicious, this sort of reaction occurs because they do not know how to react to the news and fear they will upset you by mentioning the subject. Like most people, they probably feel ill at ease with serious disease and react either with misplaced humour, trying to make you feel better by making light of it, or on the other hand, by completely ignoring the elephant in the room. They may well even avoid you, not out of fear for themselves, but simply because they do not know how to discuss what's happened and fear they may say the wrong thing and upset you. If they see you are at ease talking about it they should come around and adopt a more mature approach.
Bill
Biopsy

4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007

Post-op

Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct '07 <0.1 undetectable
PSA Jan '08 <0.1 undetectable
PSA April '08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August '08 <0.001 undetectable (disregarded due to lab "misreporting"-----it is not possible for any lab to get a reading of less than .003)

Post-op pathology rechecked by new lab:

Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September '08 <0.01 (new lab)
PSA February 09 <0.01
PSA May '10 <0.01

www.yananow.net/Mentors/BillM2.htm

Never underestimate old people ............ you don't get to be old by being stupid.

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 8/18/2010 5:07 AM (GMT -6)   
An, your friends reactions to the news about your husband's cancers is not uncommon. People get scared when they hear the word "cancer" regardless of what body parts are involved. I suspect that your friends reactions are simply more of not knowing what to say.

Due to media hype, cancers like prostate and skin are seen as "ho hum" diseases...as my sister in law said to me when her brother (my husband) was diagnosed "what are you worried about...no one dies from prostate cancer." I love her dearly but wanted to throttle her big time! Of course, her perspective is different as her husband was diagnosed with and died from advanced lung cancer five years ago.

When my mother died from breast cancer over 32 years ago, I was angry at her friends and co-workers who seemed to shun her and me. My initial thought was "cold hearted b*****s" but, looking back, I now believe it was fear that kept them away.

People are funny when it comes to cancer. They don't know what to say or do and some just pull away. I do hope that you have some friends and family who will move closer to you and offer you support and comfort during this difficult time.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!

pipedream
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 8/18/2010 7:14 AM (GMT -6)   
We've had a lot of "oh, if I had to have cancer, that's the kind I would want". We also had people say that when my husband had colon cancer 7 1/2 years ago....go figure.

And several people have said "Oh, that's the best kind of cancer!" as if getting cancer of any type can be a good thing. My husband has a great sense of humor and he just laughs. And usually says something like, "Well, I've always shopped for the best - guess this is no different." or "Thank goodness, I got the good kind this time".

I am sure that our friends are just trying to help us feel better about the diagnosis. We do appreciate that prostate is generally not a quick killer but at the same time, the responses sort of diminish the seriousness of the situation as if we don't really have to be that concerned. We know that no one (besides medical people working in the field) can begin to understand the complexity of prostate cancer and treatment options unless they are intimately involved in the disease themselves. We were also uneducated about protate cancer prior to a couple of weeks ago so we continue to educate ourselves and have patience for some of the responses we hear.
Husband DX @ 64; 7.5 year survivor colon cancer; father had PCa @ age 65
04/09 - PSA 3.06 - retest in 6 mo
10/09 - PSA 1.55 Free PSA 7.74% - retest in 6 mo
04/10 - PSA 4.26

Biopsy 7/10
R base - 3+3=6 10%
R mid & apex - benign
R anterior horn - 3+4=7 20%
L base - 3+4=7 90%
L mid - atypical small acinar prolif
L apex - 3+3=6 < 5%
L anterior horn - 4+3=7 60%

jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 8/18/2010 8:26 AM (GMT -6)   
Both my boss and my pastor had a similar response about me wanting to keep the information private. I said I "had cancer , I didn't commit a crime." smilewinkgrin
63 yo
V10.46 Dx Feb-09

RRP 5-5-09

No adverse SE

PSA 6-19-09  -0-

PSA 9-21-09  -0-

1 year PSA 5-3-10  -0-



Thriving, not just surviving!


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/18/2010 9:36 AM (GMT -6)   
This is a great thread.
 
I have found NO DIFFERENCE in attitude after my PC dx. All our friends still shun us. No, just kidding. Honestly, we have not seen any difference.
 
At work, my Department is almost all male. I think they can relate to my situation. They have been friendly and supportive. I have noticed no change whatsoever. I am also in a poker group with friends that I have know for 10-35 years. Again, I have noticed no change. We have other friends,, mostly couples. Again, no difference whatsoever. Ditto with family.
 
In fact, I haven't even thought about the question of this thread. Now that I have, I can only say that we are fortunate in that regard.
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. Next PSA late Sept.

STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 8/18/2010 9:50 AM (GMT -6)   
We kept my diagnosis fairly close to the vest before surgery; close enough that a pathologist friend who works at the hospital didn't know I was ill until he checked my prostate into the pathology lab. My wife didn't want people to cut her off as they had when I had a (non-malignant) brain tumor. Many of the few who did talk with her then spent a lot of their time trampling over their tonsils and my wife didn't want to deal with it until she had to. This time was better. We've moved 1300 miles and many of our friends here are doctors so much of what we heard from them was positive about the doctor. However, my wife did have to tell one oncologist friend that she no longer wanted or needed to hear his negative opinion about my treatment choice. All in all, though, I think people are mostly trying to do the right thing. They just have no idea what it is. Rather than do the wrong thing many will do nothing and run. You just have to over look the stupidity and hope they do the same for you when you are stupid.
Diagnosed at 54
PSA 8.7 Biopsy 1/7/09
4 of 6 cores positive, one at 90%
Gleason 3+4=7 Neg bone scan 1/15/09
One shot Lupron Depot 1/27/09 Tax Season
RP 4/29/09
Neg lymph nodes, postive seminal vesicle, 1 positive margin
Gleason 3+4=7 with tertiary 5 T3b
Catheter out at 2 weeks no nighttime incontinence Pad free week 5
PSA 6/6/09 <0.1; 9/10/09 <0.1; 3/11/10 <0.1

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 8/18/2010 10:33 AM (GMT -6)   
I had yet another variation - lots of folks who offered to do anything to help, but when I did call (not often, but I was housebound - no driving, no family near, for a month), amazing how many people had something else going on; no sorry, can't help today, have to pick up (the kid, milk, laundry, dog, pick one).

On the other hand, a few people did help out - I asked if they were going to the store (hint, hint) could I ride along, anyone headed near where my Drs. office is next week? I found that the oldest and best friends did what they needed to do to be available.

It was a surprise, but the folks at my (big box, big name, but nearby) grocery store even called to get my shopping list over the phone and dropped stuff off as someone was on the way home.

Woodworker
Regular Member


Date Joined Apr 2010
Total Posts : 90
   Posted 8/18/2010 1:54 PM (GMT -6)   

At my work place, I kept it very close to the chest.  There was only a hand full of people that knew I had prostate cancer.  I had surgery over 6 weeks ago and it is still that way, my choice. At church, we let everybody know.

 

From the beginning I told everybody that I was very lucky.  The cancer was caught early and at such low levels that I was surprised they caught it.  In spite of that, I felt like most people were looking at me like I was on my death bed.  In spite of my best efforts that attitude didn't change.

 

Two of the people I work with on a daily basis (and did know about it) were great. They did not treat me one bit differently, nor did they make any stupid comments.

 

I think it just scares most people and they don't know how to deal with it.  I also know it has made a few men about my age (at work and church) uneasy since they haven't had physicals or colonoscopies.

 

Hopefully the will take the hint from me and get checked out.


_________________________________________
Age : 56
Diagnosed 3/29/2010
Pre-Surgery
Placed on 5mg Cialis daily on 6/2/2010
Started pre-operative physical therapy on 6/2/2010
PSA 2.7; Gleasen (3+4) Biopsy 2 cores of 12 25% positive
 
DaVinci surgery 6/25/2010
 
Returned to work: 7/12/2010
 
Post Surgery
    Final Biopsy report
   5 slides of 35 showed 2% positive for cancer
   Clear Margins
   Final Gleason (3+4)
Incontinence:  None
ED:  Still dead as a door knob
        Still taking 5mg Cialis Daily
 
 

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1148
   Posted 8/18/2010 8:36 PM (GMT -6)   
They are pretty close friends, we are used to seeing them weekly.

So we have to find a way to work through this.
I imagine they are uncomfortable and they probably want to keep things light and they see this as a heavy dark thing. It's probably a lot easier for them to catch up with their non-cancer friends. I am a bit diappointed in them but different people react differently.

It's unlikely that they see this as a ho-hum thing, early last year we all went to a mutual friends funeral in another city. He died of prostate cancer at 62.

Still we have been overwhelmed by the number of people who have been there for us. So we should count our blessings.

An
Husband's age: 52. We live in Sydney Australia.

In 2007 my husbands PSA level was 2.5.
In Feb 2008 it was 1.7
In Oct 2009 it was 3.67 with a free PSA ratio of 27
In Feb 2010 it was 4.03 with a free PSA ratio of 31.
In June 2010 it was 2.69

DRE normal.
Biopsy 28/4/2010: results, negative for a diagnosis of PC however 3 focal ASAPs on left side of prostate at base, apex and at transition resulting in the conclusion "...small acinar proliferation is suspicious but not diagnostic for prostatic adenocarcinoma."
Review of biopsy by experienced pathologist, results,
1 out of 12 core diagnosed with 10% of Gleason score 3+3 cancer (left transitional)
1 out of 12 cores with ASAP (left apex), suspicious but not diagnostic of cancer

Next steps: Nerve sparing RP on 20th August 2010.

My husband's maternal grandfather died of prostate cancer at 72. His maternal uncle died of prostate cancer at 60. Because he is the third generation to be diagnosed he has hereditary PC.

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 8/19/2010 5:29 AM (GMT -6)   
Regal, I don't blame the public for having that reaction (that prostate cancer is the "good" kind to have). Unless it touches your life, the average person has little knowledge about PCa. We know all about breast cancer and mastectomies and reconstructive surgery and chemo/radiation, and we sympathize (as we should) with the women who go through it. My mom had breast cancer and died from it after having a radical mastectomy, 2 years of chemo, then a recurrence in the other breast followed by a lumpectomy only to die from it 3 years after diagnosis. Prostate cancer is a different "beast", no doubt, but it is still a cancer and has the potential to ruin lives.

An, I hope you and hubby are doing OK...I know this is a very difficult time for both of you.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!

erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 8/19/2010 8:37 AM (GMT -6)   
I believe most folks are kinda "lost for words" and although they want to give some consolation, just don't know what to say. No big deal to me though. Our friends do NOT treat us any differently after hearing about my PC Dx.
Bob, located in Southern Colorado

Age 73 Retired Railroader.
Dx Jan 2010, Volume 51.345
Gleason 3+4=7, second opinion 4+3=7 (Don't know which to believe)
PSA
2.6 4/96.......... 3.7 4/07
1.9 5/97.......... 3.2 1/08
2.3 4/98.......... 6.1 4/09
2.2 10/99......... 5.3 5/09
2.4 8/00......... 5.3 8/09
2.3 6/01......... 6.9 10/09
2.9 2/03......... 7.3 12/09
3.6 4/04......... 6.1 1/10
3.0 5/05......... 5.0 3/10
4.7 4/06......... 0.7 5/10 (Lupron/Bicalutamide)
Volume study at CPCC (Westmont, IL) Feb 15, 2010 = 55.7cc
On Feb 15, 2010 put on 90 days of Bicalutamide
Got LHRH Lupron shot on Feb 29,2010
Another Volume study May 24, 2010 = in mid-40cc
BRACHYTHERAPY received May 26, 2010
Received 80 I-125 (Iodine seeds)
Activity per seed (mCi) 0.373
Total activity implanted (mCi)29.80
Measured exposure @ 3 feet (mR/hr) 0.06
Received the Brachytherapy at the Chicago Prostate Cancer Center from Dr. Brian Moran
Walked in the facilty and just a few hours later walked right out.
No after effects other than just a little sore from the needle sticks but NOT serious
enough to take ANY meds for pain.
PSA to be taken in three months (Aug 2010).

stevmac1
Regular Member


Date Joined May 2010
Total Posts : 129
   Posted 8/19/2010 2:51 PM (GMT -6)   
An,
Try not to burn any bridges. A couple of my closest friends did sort of the same thing. No visits or phone calls for about 3 weeks. I decided to let it ride, and now everythings back to a normal relationship. I guess people can be uncomfortable with akward situations. I definitely learned what to do when & if anyone close to me is sick.
Contrarily, I was pleasantly surprised with some other friends, and my mother, who called and/or visited almost daily!
steve
50 Yrs. old. DX Feb, 2010 w/6.6 PSA.
Biopsy 04-24-10, Gleason 3+3=6
4 of 5 cores left side inv. 4 of 6 rt side
RRP 06-07-10....
16 days post-op, catheter out.
Gleason upgraded to 3+4
No involvement of lymph nodes & seminal vesicle.
Totally continent @ 8 weeks post-op. (!!!)
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