Does the fear of recurrence ever go away (or even subside)

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newtopc
Regular Member


Date Joined Dec 2009
Total Posts : 90
   Posted 10/5/2017 4:57 PM (GMT -6)   
So I will chime in on this one. Before I had a positive Dx I would call the doctors office 48 hours after my blood draw, I would graph the increase or decrease to see what the trend looked like visually. Once I was able to get them on-line I would check the very next day. I posted them here and asked for advice, feedback and ideas. All very much appreciated and helped me greatly.

After my first PSA <.01 I stopped thinking about the next test and put it in my daytimer for when to get a blood draw.

I do not think about it until I turn the page and see PSA circled. Then .....some anxiety....but I do not look at the result until the day before my appointment. There is nothing I can do about it but I want to have enough time to post my PSA here if it is a bad result to get advice and support before my URO appointment.

opened my calandar for November.....there it is.... circled PSA draw the first week..... signed in here to see how folks are doing....... I will look at the result the next week just before my appointment.

If all is well I will not think about it again until April.....

Greg
53 YR Old,
2009,, 4.1/4.6/ 4.0,
2010, 6.2, FPSA 4%, Biopsy Neg, 6.2/4.6/4.3,
2011, 4.9/ 5.7, Biopsy Neg/ one core HGPIN and ASP
2012, 5.0,/4.9/5.7,
2013 5.2,/6.2,/5.8
2014 5.8 / 6.1 /6.2 MRI Neg
2015 6.2 / 6.7 / 7.6
2016 Dx 3+4 in 2 of 12 cores 3% & 25% involvement
open RP May 24, 2016
PT3a - EPE - 7% involvement. margins, nodes and seminal clear
PSA 08/16 <.01
PSA12/16 <.008
PSA 5/17 <.008

Skypilot56
Regular Member


Date Joined Mar 2017
Total Posts : 169
   Posted 10/5/2017 6:17 PM (GMT -6)   
I guess in a way I didn't really get a chance to stress out my first psa came back detectable so never got to worry about recurrence yet hopefully that time will come when it is undetectable all I worry about now whether I should do ADT or not?

Larry
Male 61 DX age 60
Father had PC
2002. Psa. .08. Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo Clinic Mn
Path Report: Gleason 9, Seminal vessels and one nerve removed, negative on margins, 35 lymph nodes removed no cancer, tumor was pt3b. Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia repair
6-13-17 1st psa check 0.13
7-19-17 psa 0.12 MRI clear
8-29-17 shoulder replacement

George_
Regular Member


Date Joined Apr 2016
Total Posts : 395
   Posted 10/6/2017 6:05 AM (GMT -6)   
Larry,

the surgeon did remove only one nerve but this means that there is probably benign tissue left which will produce the PSA now.

However, with a Gleason 9 there is a very high probability for a recurrence. I read over 90%. Even if both nerves were removed. Since you mention ADT, here is a study presented at the ASCO conference this year which shows great success for high risk patients when ADT is started shortly after RP. An earlier report about this study is this article. Ten years after the RP 87% of these high risk patients were alive and from the remaining 13% only 2,3% died of prostate cancer. However, according to another study you have to start right now after the RP with ADT, the benefit is smaller if you wait. I would not use CAB today, 18 months of Degarelix will probably have the same effect. Lupron vs Degarelix

The objective of the study was to test Mitoxantrone but the result of the control arm is interesting today. So ADT can be an alternative to radiation.

George

VIEW IMAGE

Post Edited (George_) : 10/6/2017 6:09:19 AM (GMT-6)


Skypilot56
Regular Member


Date Joined Mar 2017
Total Posts : 169
   Posted 10/6/2017 7:08 AM (GMT -6)   
Thanks George Looks like they were targeting guys with just about the same dx as myself Wonder what year this was published

Larry
Male 61 DX age 60
Father had PC
2002. Psa. .08. Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo Clinic Mn
Path Report: Gleason 9, Seminal vessels and one nerve removed, negative on margins, 35 lymph nodes removed no cancer, tumor was pt3b. Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia repair
6-13-17 1st psa check 0.13
7-19-17 psa 0.12 MRI clear
8-29-17 shoulder replacement

George_
Regular Member


Date Joined Apr 2016
Total Posts : 395
   Posted 10/6/2017 7:56 AM (GMT -6)   
To determine the results of treating patients with ADT a study needs to run for a very long time. The study accepted patients starting in the year 2000 until the year 2007 and then observed these patients. First results were reported in the article I mentioned in 2011 and further at the ASCO conference in 2017. The study shall complete in 2022.

George

cashlessclay
Regular Member


Date Joined Apr 2015
Total Posts : 105
   Posted 10/6/2017 9:14 AM (GMT -6)   
Here is how I would reduce the anxiety of possible recurrence.

The top causes of death for adults over the age of 65 are:

Heart Disease.
Cancer.
Chronic Obstructive Pulmonary Disease (COPD)
Cerebrovascular Disease (Stroke)
Alzheimer's.
Diabetes.
Pneumonia and Influenza.
Accidents.

Diet and exercise can make most of the above less likely to occur.

So, make a promise to yourself that if recurrence happens, you
will cleanup your diet, and exercise daily. That way, if it does
happen, it is possible that you could actually live longer and better.

www.healingwell.com/community/default.aspx?f=35&m=3515667

Cashless

island time
Veteran Member


Date Joined Dec 2014
Total Posts : 1236
   Posted 10/6/2017 11:48 AM (GMT -6)   
Acceptance of mortality has come with age and cancer. This body's gonna break down.

enjoy it while ya can
PSA 2010 thru 2014...4.0 +/- .7
Dx 12/14 @ 56 yo...2 cores G6 <5%, 1 core G6 20%, 1 core HGPIN.
RALP 11/25/15...3+4. 3 to 5 mm surgical margin 15% involvement pT2+
2/16-.01...4/16-.00...7/16-.00...10/16-.01...1/17-.01...4/17-.02...7/17-.02

ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 805
   Posted 10/12/2017 9:13 PM (GMT -6)   
I can tell you this "we can do this".....after 9 years of <0.03 and also being a G6 post op. I don't even think about it anymore.

I have read every medical study I can find and I come to the same conclusion over and over and over. You are going to have to really try hard to die of organ confined G6. I mean are going to have to work at it every day and twice as hard on weekends. It just doesn't happen. You will get another cancer before this cancer ever comes back to kill you. If you don't believe me as dr. Walsh. He did not lose 1 organ confined G6 patient in 30 years.

Go find something else to do.

ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 805
   Posted 10/12/2017 9:18 PM (GMT -6)   
BTW. Your .04 was a lab error. I had one of those to. A 0.04. I retested the next week and it came back <0.03. This was a couple of years ago. I was 42 at diagnosis.

FoxRun
Veteran Member


Date Joined Aug 2011
Total Posts : 807
   Posted 10/13/2017 9:23 AM (GMT -6)   
A very interesting thread indeed and something I've thought about many many times. I still get that queasy feeling in my stomach when sitting in the Dr's office ever 6 months and I don't know if it will ever go away.

DX in May 2011, Age 52, Stage T2c, GG 8-10, PSA=10.6
EBR + Brachy Seed Implants + HT(22.5 mg Lupron for 1 year)
Nov 2011,PSA 0,
Feb 2012, PSA 0 (T=1.66), Nov 2012, 0.29 T=4.0
May 2013 0.32 T=5.11, Nov 2013 - 0.20 T = normal
May 2014 0.22, Nov 2014 - 0.60,
May 2015, PSA=0.7 NEW- Nov 2015, PSA-0.18
May 2016, PSA=0.76, 5 years later 0.39 Nov 2016

Going for brachy
Regular Member


Date Joined Apr 2011
Total Posts : 146
   Posted 10/14/2017 7:32 PM (GMT -6)   
I was going through my biopsy report of March 2011 for a diagnosis of Gleason 3 + 3. What struck me that the report mentioned the chance of spreading of low risk cancer is 50% within 10 years. And here I am with recurrent cancer 5 years after initial diagnosis and brachytherapy. The recurrence is not inside the prostate, it is in an external mass attached to the prostate. I had cyberknife in January 2017. So far my PSA has been < 0.01. Once the effects of Lupron (last shot April 2017) wears off, the PSA may rise again.
__________________________________________________________________________
Age 70 (at diagnosis)
PSA 3.4 January 2011
Biopsy Feb 2011 Gleason 3 + 3 T1C 2 out of 12 one 5% other 10%
Seed Implant 6/20/2011 88 Iodine-125 seeds
PSA History:
9/2011: 1.1, 12/2012: 0.1, 6/2013:0.2, 12/2013: 0.1, 7/2015: 0.4, 7/2016: 1.5, 10/2016: 1.8
Recurrence outside prostate/Metastatic cancer

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 611
   Posted 10/15/2017 2:41 PM (GMT -6)   
Going for brachy said...
The recurrence is not inside the prostate, it is in an external mass attached to the prostate.



Did you doctor say anything about this being a secondary cancer?

Going for brachy
Regular Member


Date Joined Apr 2011
Total Posts : 146
   Posted 10/15/2017 3:43 PM (GMT -6)   
Radiation Oncologist thinks it is local recurrence. I had four MRIs including the cyberknife planning since September 2016. Cyberknife will succeed only if it is local recurrence. That is the hope. But since prostate cancer is such a beast, I am keeping all possibilities in sight. My feeling is that if it is metastatic, I would know in a year or two.
__________________________________________________________________________
Age 70 (at diagnosis)
PSA 3.4 January 2011
Biopsy Feb 2011 Gleason 3 + 3 T1C 2 out of 12 one 5% other 10%
Seed Implant 6/20/2011 88 Iodine-125 seeds
PSA History:
9/2011: 1.1, 12/2012: 0.1, 6/2013:0.2, 12/2013: 0.1, 7/2015: 0.4, 7/2016: 1.5, 10/2016: 1.8
Recurrence outside prostate/Metastatic cancer
Cyberknife 1/17

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 611
   Posted 10/15/2017 4:30 PM (GMT -6)   
I've never heard a local recurrence following RT described in this way.

You wrote "metastatic" in your signature. But that term is not "compatible" with being local.

Agree that cyberknife will only succeed if it is local.

Nonetheless, I wish you well no matter what...

RobLee
Regular Member


Date Joined Apr 2017
Total Posts : 365
   Posted 10/15/2017 5:30 PM (GMT -6)   
rancherdave said...
Pratoman, .25 Xanax in AM .50 mg Xanax in PM, also 75 mg Effexor pm to lesson hot flashes. Met with PCP today to consider Xanax dosage change or drug change. Before Xanax got 4 to 5 hours sleep max this has improved some but not consistently.


Dave (and Ken) Effexor is a SNRI and insomnia is one of the side effects. So I'm wondering why you are taking it at night, or is PM a typo? I take it late morning, usually 10AM-noon, otherwise no sleep.
2014-15: PSA's 9, 12, 20, 25... Neg DRE, Neg TRUS biopsy
6/16: MRI Fusion biopsy, Right Base, 2x40%+2x100% all G8 (4+4)
8/16: DaVinci RP, 6mm EPE, PNI, 25% G4, BL SVI, stage T3B N0M0
1/17: started 18 months Lupron ADT, PSA's ~.03
5/17: AMS800 AUS implanted, revised 5/30
39 tx RapidArc IMRT (70 Gy) Aug-Oct 2017
Age 67, recently retired to Florida 'just in time'

Going for brachy
Regular Member


Date Joined Apr 2011
Total Posts : 146
   Posted 10/15/2017 5:51 PM (GMT -6)   
NKinney If the radiation treatment does not kill all the cancer cells, you are going to have local recurrence. In my case, initial biopsy must have missed a cancerous spot on the capsule, which was not completely killed by RT. Which eventually grew into a heterogeneous mass emanating from the peripheral zone measuring about 1 inch diameter. I had cyberknife because RO thought that it is very likely to be local recurrence. I wrote Recurrence Outside prostate/Metastatic cancer because metastasis cannot be completely ruled out. At least in my mind.

Right now the mass is about quarter inch in radius and my PSA is <0.01 since April. I am waiting to see what happens when the effects of Lupron wears off.
__________________________________________________________________________
Age 70 (at diagnosis)
PSA 3.4 January 2011
Biopsy Feb 2011 Gleason 3 + 3 T1C 2 out of 12 one 5% other 10%
Seed Implant 6/20/2011 88 Iodine-125 seeds
PSA History:
9/2011: 1.1, 12/2012: 0.1, 6/2013:0.2, 12/2013: 0.1, 7/2015: 0.4, 7/2016: 1.5, 10/2016: 1.8
Recurrence outside prostate/Metastatic cancer
Cyberknife 1/17

dmlvt
Regular Member


Date Joined Jan 2014
Total Posts : 316
   Posted 10/16/2017 10:31 AM (GMT -6)   
For me, a promising post-op pathology and good early PSA tests greatly reduced the worry.

And then, the diagnosis of a second and must more dangerous cancer, eliminated my PCA concerns.

I just had my latest liposarcoma scan. I'm not going to die from PCA; it's going to be the other cancer, most likely.

Break60
Veteran Member


Date Joined Jun 2013
Total Posts : 1743
   Posted 10/16/2017 5:02 PM (GMT -6)   
For me it never goes away due to my poor prognosis after RP and subsequent treatments to whack new Mets. Everyone has their problems so I’m not having a pity party. Just living life!
Bob
DOB January 1944 (now age 73)
PSA: 8/12 2.7; 5/13, 6.6 (actually double due to finasteride)
7/13 (age 69) Bx GS 4+5=9 (Epstein); 2 of 6 cores, 10%, 40%; stage Pt1c
9/13 ORRP, GS 4+5=9, BLSVIs+, margin+ (4mm,G7), EPE, 10 Nodes resected (clear); stage upgraded to pt3bN0M0
PSA: 11/13 0.1; 2/14 0.2; 5/14 0.3
6/14 SRT by IMRT/IGRT, 68.2 grays/38 Fx to prostate bed, ADT (6 months Lupron)
PSA: 9/14 to 8/15: <.1, <.1, .1, .3, .7, 1.2
9/15 MRI, CT-PET finds two iliac lymph nodes suspicious for PCa; organs and soft tissue clear ; Start ADT3 plus plus Metformin, Cabergoline, Estradiol patch, Prolia , Vitamin D3, calcium. IMRT 75 grays/50 Fx to pelvic lymph nodes. Stopped ADT 11/16.
11/15-5/17: PSA rises from .03 to 2.3.
5/17: F-18 Fluciclovine (axumin) PET/CT scan finds abnormal uptake in intertrochanteric region of the proximal right femur compatible with skeletal metastasis measuring approx. 9 mm. No other adverse findings. Restart ADT3; start monthly Xgeva
6/17 SBRT, 30 grays/ 3 Fx to femur met.
7/17 PSA 0.3, T 3.0

Brook58
New Member


Date Joined Sep 2017
Total Posts : 4
   Posted 10/17/2017 2:38 PM (GMT -6)   
Every time. Just like Bob
PSA 1/2013 was 3.6, DRE normal.
PSA 8/2014 was 5.5, DRE normal.
Retropubic Prostatectomy 11/20/2014. Age 55.
Pathology from surgery:
Gleason 3+4=7, Tertiary Pattern 5 (15%)
Extraprostatic extension +
Seminal vesicles +
Positive margins +
Perineural invasion +
Lymph nodes, Negative
Tumor t3b
Adjuvant RT 2016

Brook58
New Member


Date Joined Sep 2017
Total Posts : 4
   Posted Today 2:17 PM (GMT -6)   
I got the good news today, PSA still at 0.1. That's 22 months past radiation. I have the Quest App on my phone. I read about it before my Uro even reads it.
PSA 1/2013 was 3.6, DRE normal.
PSA 8/2014 was 5.5, DRE normal.
Retropubic Prostatectomy 11/20/2014. Age 55.
Pathology from surgery:
Gleason 3+4=7, Tertiary Pattern 5 (15%)
Extraprostatic extension +
Seminal vesicles +
Positive margins +
Perineural invasion +
Lymph nodes, Negative
Tumor t3b
Adjuvant RT 2016
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