When did you, or when will you be willing to call yourself a survivor?

When did/will you consider yourself a survivor?
9
Following completion of my first round of treatment - 17.0%
7
Following several (2-3) good PSA readings - 13.2%
11
Five years following my first treatment - 20.8%
4
When my oncologist tells me I am "cancer free" - 7.5%
22
I won't--I don't like the term - 41.5%

 
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Dan Zenka
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Date Joined Mar 2011
Total Posts : 44
   Posted 4/6/2011 2:53 PM (GMT -6)   
 
Through my work and my time spent in clinics over the past years, I have met many prostate and other cancer patients. There is a tremendous range of feelings about being a "survivor." One discussion yesterday prompted me to blog about my observations and pose the question. I thought I would also ask it here... http://mynewyorkminute.org/?p=1301
 
Wishing everyone progress and good health,
Dan

Post Edited (Dan Zenka) : 4/6/2011 3:33:36 PM (GMT-6)


davidg
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Date Joined Feb 2011
Total Posts : 4093
   Posted 4/6/2011 2:57 PM (GMT -6)   
i think it can depend on your age when you get cancer. I'm 40 and won't feel calling myself one until i'm at least 65 because I wasn't willing to die any time sooner than that before getting cancer.

Dan Zenka
Regular Member


Date Joined Mar 2011
Total Posts : 44
   Posted 4/6/2011 3:02 PM (GMT -6)   
David G, Let's celebrate that milestone in 15 years!

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6893
   Posted 4/6/2011 3:03 PM (GMT -6)   
I think that you are a survivor from the moment you are diagnosed until the moment you die.
 
If you die of something else, other people can still say you were a survivor, but you won't care anymore
mad  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/6/2011 3:05 PM (GMT -6)   
Dan, right now, I am a four-time cancer survivor and I have no problems using the term.

I had 3 bouts with the ultra-rare porocarconom, 2x on my scalp, 3rd time in the lymph nodes of my neck. My oncologist said I needed to be 10 years clear to begin to feel safe, this is year 11.

Not doing as well with PC, already have failed surgery and failed SRT, the cancer is currently winning, so by all means, I am still surviving.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 4/6/2011 3:06 PM (GMT -6)   
I am a survivor now, as in I am not dead. Being a survivor in my definition does not mean cured/healed. Kind of like going through a bad accident or natural disaster. I have some collateral damage, but I am alive and well and enjoying life.

Goodlife

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 4/6/2011 3:14 PM (GMT -6)   
There's really no way around it. Realistically you won't have survived PCa until you die of something else. You'll always hold your breath for a second upon learning your latest PSA for the rest of your life.

For my treatment which was a clinical study it took me 3 years going from semiannual to annual checks to declare myself no longer a member of the
study.
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A

2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study

4/22/08 - TFT performed at University of Colorado Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal

7/30/08 - Psa: .32
11/10/08 - Psa.62 -
April 2009 12 of 12 Negative Biopsy

2/16/10 12 of 12 Negative Biopsy

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2649
   Posted 4/6/2011 3:22 PM (GMT -6)   
I remember reading somewhere about a man who preferred to call himself a "cancer warrior" rather than a survivor, because "survivor" sounds too passive, whereas "warrior" conveys that it's an ongoing struggle.
 
I think of myself as someone who has been treated for prostate cancer, rather than a prostate cancer survivor, though I do use that term, from time to time for convenience.  I had surgery just after my 65th birthday and would probably have lived at least 5 or 6 years (a guess, of course) without treatment, so until I get beyond the point in my life where the cancer would likely have done me in, I'm not technically a prostate cancer survivor. If I don't have an eventual recurrence, I guess it would then be right to consider myself a prostate cancer survivor.

Post Edited (clocknut) : 4/6/2011 3:25:53 PM (GMT-6)


Dan Zenka
Regular Member


Date Joined Mar 2011
Total Posts : 44
   Posted 4/6/2011 3:27 PM (GMT -6)   
I like your distiction of being "a survivor of prostate cancer treatment..." That's probably one that nearly everyone could get their arms around!

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2649
   Posted 4/6/2011 3:39 PM (GMT -6)   
Thanks, Dan, and then I went and edited to read differently.  Maybe I should have left is as you quoted it:  a survivor of prostate cancer treatment.

Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 4/6/2011 5:36 PM (GMT -6)   
I am a survivor of Prostate Cancer. I use it because I feel after my prostate came out I'd survived. I will be participating in the Relay For Life of Coral Springs, FL on 4/15. I will be attending as a survivor. The team captain has gone through 2 chemo regiments for breast cancer.
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 10/12/2010 DR Paul Kahn all nerves spared
Home 10/19/20
Cath out 10/22/2010
Prostate 56 gm. Gleason grade 3+4 = 7
2 MO PSA 0.0

Dan Zenka
Regular Member


Date Joined Mar 2011
Total Posts : 44
   Posted 4/6/2011 5:39 PM (GMT -6)   
Ger 42--congrats on a good outcome. All the best to you in the upcoming Relay for Life!

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 4/6/2011 5:43 PM (GMT -6)   
Every morning, I wake up, take in fresh air, see the daylight and think, Every Day is A Bonus.

I am a survivor every single day. I have a climbing PSA after surgery and RT and yet I do something wonderful every day.

So for me there is no time line. It just is what it is. And I am enjoying the hell out of life.
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9
3/7/11 PSA 4.2

erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 4/6/2011 6:44 PM (GMT -6)   
This coming Winter, I will celebrate my 30th year of survivorship from a cancer (clear cell sarcoma) which I had back in 1981. Luckily was able to enter a sarcoma study being accomplished by the National Cancer Institute in Bethesda, MD and was provided with Chemo, Surgery and Radiation. Now just about 30 years after all that stuff I have/HAD prostate cancer. Have been treated wilth Brachytherapy last May and I should be good for another ten or fifteen years. Better mention that my 75th birthday will be rolling around also this coming Winter. Hey, life is great and a lot of great support has really helped me. :-)

FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 4/6/2011 6:53 PM (GMT -6)   
I agree with the earlier comment, I was a survivor every single day after the day I was told 'You have cancer'.
Dx'd 2/11/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
T3N2M1c
Was on Casodex, HDK, Nilandron
Finished 12 rounds of Taxotere on 1/26/09
Then back to HDK+HC, then DES+Cumadin,
Then high dose Casodex
15 radiation treatments 06/10 for leg/hip pain
Current PSA(3-24-11) 403
Treatment: Lupron, Finasteride, Zometa, Abiraterone
~~~~~~~~
Blog: prostatecancerat42.blogspot.com

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/6/2011 7:37 PM (GMT -6)   
Dan I didn't answer the question and agree with some of the others...

I think we are cancer survivors the moment we take our first action to get well. For me it happened in my urologists office soon after he walked in and told me and my wife "well there's a little cancer down there". I was there watching him describe what actions were available to me ~ and as foggy as that memory may be ~ I remember thinking that immediately I was going to have to do something because I wasn't ready to die yet. I survived that day and each stepping stone along the way.

To me those are better answer selections to a different question ~ When do you call yourself cured?

Edited to answer my own question using the above table: When do you call yourself cured? I won't ~ I don't like the term

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 4/6/2011 10:31:45 PM (GMT-6)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 4/6/2011 9:19 PM (GMT -6)   
I posted on this a year ago. I personally HATE that term. But, that's just me.
 
If you go to fight in a war, your life is on the line. If you make it out alive, you have survived. The war is over; the threat is gone. I see no such analogy here.
 
Maybe with 10 years of undetectable PSAs I'd think differently.
 
Mel

Paralleli
Regular Member


Date Joined Jul 2008
Total Posts : 123
   Posted 4/6/2011 10:21 PM (GMT -6)   
Like many, I dislike the term "cancer survivor". To me it seems, I don't know, melodramatic or something. As Tony pointed out, "surviving" would also imply that one has been cured. After four years, I'm not ready to go the "I'm cured" route yet. I'm sure the old PSA tests will continue to cause me to pause and think for years to come. On the other hand, like they say, ain't none of us going to survive life so we all need to make the best of it PCa or no PCa.....
IMRT 1/07 - Doing well.

In This Together Wife
Regular Member


Date Joined Dec 2009
Total Posts : 135
   Posted 4/7/2011 6:45 AM (GMT -6)   
Things moved so quickly from diagnosis, to surgery, to zero PSA that "we" never really grasped the "having cancer" part. 
 I love the Prostate Cancer Treatment Survivor term.  That we would definitely call ourselves! 
 Like the cancer warrior phrase also.  Gonna share that with a young woman who was recently diagnosed with colon/liver cancer and needs a miracle.
Stay strong,
CareBear

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/7/2011 7:16 AM (GMT -6)   
same here. I think we don't have pc anymore but are aware that it could pop up again at anytime.

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2211
   Posted 4/7/2011 9:00 AM (GMT -6)   
At present (after several good PSA scores) I regard myself as surviving, rather than as a survivor. I am not really comfortable with the term survivor. I think it may ultimately boil down to what they say about me many years from now when they talk about what I died of. If I died of heart failure then I was a survivor, if the PCa got me then I wasn't.
Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr CT
66Gy 28 Apr to 11 Jun 10
Tired + weird BMs
14 Sep 10 PSA <0.1
12 Jan 11 PSA <0.1
Erection OK

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 3655
   Posted 4/7/2011 12:19 PM (GMT -6)   
Many people die during their marriage so one could deduce that marriage can be a terminal condition. Thus I am a 37 year marriage survivor.

My wife would now be a two time breast cancer survivor....but, if we either survive or not, how can we survive twice?

I don't like the term. I am a survivor of this life and all that comes with it until I pass on to the next life. I like to think that I am being treated for prostate cancer and trust I am in a long term remission. Thus, I can turn my treatment concerns to other conditions that may be more life threatening.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard shot and daily Jalyn started on 10-7-2010.
IMRT to prostate and lymph nodes 25 fractions started on 11-8-2010, HDR Brachytherapy 12-6 and 13-2010.
PSA <.1 and T 23 on 2-3-2011.

M23
New Member


Date Joined Apr 2011
Total Posts : 1
   Posted 4/26/2011 12:12 PM (GMT -6)   
My PSA was undetectable following surgery five years ago, but started to slowly climb after two years. Last fall I went through two months of radiation. Six months later my PSA is again undetectable (<0.03).

I will consider myself a survivor if it is still undetectable five years from now.

Smkymtdel
New Member


Date Joined Apr 2011
Total Posts : 1
   Posted 4/26/2011 1:46 PM (GMT -6)   
It is a verb while your PSA remains low, after being diagnosed & treated- during that time you are surviving.  On the day you die, from something other than prostate cancer, it becomes a noun and your gravestone can indicate you were prostate cancer survivor.  That is the way I see it.

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5646
   Posted 4/26/2011 5:28 PM (GMT -6)   
I like the warrior term, I mean any kine cancer aside, do you see yourself as a warrior or as a survivor. Think How George Carlin would say these words in his skit about Football and Baseball, Come on someone remembers that skit.
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving
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