My name is Terry and I have Prostate Cancer

[Guest]

(Original post 3 March 2014 last updated 20 April 2015)

Hi,

Sounds a bit like AA .....(grin)....though I'm not at that place.
I'm like all you guys out there....""It'll never happen to me!!""
Guess what!!
What a game changer!
Life was going along OK...then Whamo!
Whole new ballgame.

In Brief-- the major points are as below:-
Month and year of diagnosis. August 09

Age at diagnosis. 62

PSA at diagnosis. 3.28

Gleason score at diagnosis. (from biopsy) 7 (4+3)

Stage. T3b downgraded on second opinion to T2
Bone scan result at diagnosis.
Negative

CT Scan. shows prostate enlarged with well defined planes and no evidence of invasion into surrounding structures.

Initial treatment - surgery. Robotic Prostatectomy 1/12/2009

Result of operation. Bilateral adenocarcinoma Gleason pattens 4+5=9 perineural extraprostatic extension left bladder neck. Seminal vesicles and pathological margins clear. Vascular invasion noted, pT3a. (not so good)
Lowest PSA after initial treatment.
0.040 --about 3 months after operation

Month and year of recurrence. September 2010

PSA at recurrence. 1.2

Recurrence treatment - hormone therapy. Eligard 3 monthly for 1 year

Monitor PSA
PSA rise
10.90 11/12/12
Recurrence treatment - hormone therapy.
Eligard 3 monthly

Bone scan + CT scan negative for mets
PSA drop
low of 0.570

Medication change Lucrin 3 monthly + Cosudex 50mg daily

PSA Rise    High of 2.770

MRI + Bone Scan     17/01/14 found 2 mets

Stereotactic Radiation  --2 bone mets

Continue Medication and Monitor PSA

PSA drop     low of 2.150

PSA Rise    2.790     01/08/14

MRI     Scheduled 16/09/14

Late Sept 2014 Had a meet with Patrick Bowden (rad onc Epworth Melbourne) after MRI due to rising PSA.

Result negative, but he offered PSMA PET scan at Peter Mac in about a month .

Hoping this will find the problem.

It is a full body scan and shows metabolic activity as against structural change.
This is very new and has only been available in Melbourne for 3 weeks as of late Sept 2014

The Pet Scan showed a nodule in the prostate bed and also one in the liver. (very uncommon for prostate cancer)
Had another MRI to fix the location of the liver met.
Had a biopsy of the liver met with ultrasound organised by the medical oncologist for examination to find the mutation type.

Monday 3rd November 2014　
Start Salvage Radiation to prostate bed.
This will be 37 sessions Monday to Friday each week ending Xmas Eve.

Tuesday 6th January 2015
Start Stereotactic Radiation to liver
This involves special setup to allow for breathing (and hence met moving) managed by gating the beam so things are in the right spot.
3 weeks after finished radiation to prostate bed had radiation induced cystitis.

Took URAL + Flowmaxtra + Nurofen. This took a few weeks to settle down.

 

Early February PSA dropping fast ...now 3.2
Stopped Cosudex..Still on Lucrin
Early April PSA 0.64 ....great!

Mid May PSA stopped now 0.68 ...bugger!

mid June PSA 1.2 ..going up again.
Back on Cosudex
Like a roller coaster !!

 

Continuing on ... now that the PSA is going up again while still on Lupron must start the scans again to try and find the source.

4 Jun 15
Ben Tran
--wants CT scan + bone scan in about a month & possibly a PSMA scan at Monash a week later

27 July 15
PSA & blood tests for Ben Tran

28 July 15
CT scan abdomen & pelvic area in morning + Bone Scan in the afternoon.
---now waiting for Ben to contact us.
(Lake Imaging Ballarat)

4 Aug 15    PSA  7.1

 

6 Aug 15    PET PSMA scan at Monash Moorabbin Hospital

12 Aug 15  PSA  21.6   Ben Tran appointment  Medical Oncologist)result not good.
PSMA scan showed 1 bone met left inferior pubis ramus and also multiple right inguinal node showed increased ligand accumulation, the largest 1.8cm with a couple 1.5cm while further two sub-cm sized nodes were also seen with increased ligand concentration within.

The good news is that the previously treated mets including the liver met seem to be non-active.

Ben thinks that stereotactic radiation to the bone met and possibly to the lymph nodes if Patrick will do it. Possibly an operation if Tony Costello thinks removal of the lymph nodes would be better.

Due to see Patrick on the 19th.

Ben also thought a trial may be in the wind in the future as my case seems to have lost the PTEN gene, and there is a trial coming up later in the year.

(note: Snuffy in one of his videos reccommends Metformin for cases with PTEN gene loss)

 

19 Aug 15
Patrick Bowden appointment.

Pat, after quite a long think, recommended stereotactic radiation to the bone met (50gy of 10 sessions) and also to the right inguinal lymph nodes. His procedure here is to radiate the whole area of the lymph nodes (35gy) and the specific lymph nodes shown up on the PSMA scan (50gy). The theory here is to hopefully get any other nodes that haven't yet shown up on the PSMA scan with the 35gy treatment. He said a possible outcome is lymphodema in the right thigh, but this is not expected to be a major problem. He also advised that if I had an operation to remove the right inguinal lymph nodes that they would all be removed, a more serious problem and lymphodema a likely outcome. An operation would mean admittance to hospital and long recovery time.

Having agreed on the procedure he sent us off to the radiation department and had a CT scan to physically locate the body in one of those molds for reference when the procedure starts.

We're advised that the procedure begins in 2 weeks on Wed 2nd September for 10 working days. In the meantime they will get the PSMA scan from Monash Hospital to do the planning of the stereotactic radiation.

Patrick wants a PSA just before radiation starts for reference I think as of today my PSA is likely to be around 15 and by the time the procedure begins about 30, based on a doubling time of about 2 weeks obtained from the previous few reading since it started going up again.

.

2 Sept 15  Start of stereotactic treatment  10 days.

Having some problem with lymphodema but not too bad

 

22 October 15   PSA  6.9

----2 months later-----

14 December 15   PSA  6.6

 

Spoke with Patrick Bowden ref  PSA. he expected it to not stop at 6.8 but to keep going down to zero point. something

Could be it went below 6.6 and is heading back up again............ damn

 

Due for a PSA in a few weeks to see where I am

 

It may mean another lot of scans..maybe another PSMA and depending what is found

--maybe more stereotactic radiation or maybe systemic therapy, or maybe  ???

23 Jan16 PSA 8.3

--yep...going up again!

　

4/2/16 Ben Tran (Med Onc)appointment

　

3/3/16 PSA 13.7 doubling time about 2 months.

　

9/3/16 Ben Tran Handballed tp PeterMac to see if eligible for Galeterone trial

Eligibility is pre-chemotherapy and CTC's with AR-V7 variant.

Bend didn't think SRT would be applicable in the future and if not on the trial would probably be systemic therapy.

　

12/4/16 After two trips to PeterMac and numerous phone calls finally found out I didn't have AR-V7 variant

therefore not eligible for trial.

　

14/4/16 Back to Ben Tran

PSA 24.0

After examining any trials I would be eligible for (none at present..partly because of my previous liver met)

finally came to systemic therapy...i.e. docetaxel (taxotere)

but Ben passed on that because of my low white blood cell count (chemo makes it worse)

Finally worked out that Xtandi (Enzalutamide) would be OK in this case (not normally before chemo!)

　

Ben wants a blood test now and scans -- bone scan and CT (or PSMA... which costs $700 each time! as cant claim for it!)

then start Xtandi and then another blood test in about five weeks (mid May) before I see him again.

　

He said I may have side effects, probably fatigue, (got that already from Lucrin) but they would start to occur in the first week or so.

　

20/4/16 Had CT scan and Bone scan in Ballarat (Lake Imaging)

 

Started on Enzalutamide ( Xtandi ) Will be watching the PSA !!

---side effect of fatigue a little bit worse, but not too bad.

　

18/5/16 Saw Ben Tran ..got PSA result, now 6ng/dl down from 24ng/dl Damn good result methinks

---except from bone scan and CT previously I have new bone mets and also a liver met.

　

29/6/16 Saw Ben Tran..got PSA result, now 3ng/dl down from 6ng/dl very pleased

---Ben quite happy the way things are going. He said to have another CT and bone scan in about ten weeks and he will use tis as a new baseline. If a particular met is causing trouble may treat with radiation.

 

After the last few months I hope to treat the next couple of months as a holiday, ----all fingers crossed.

 

　

Stay tuned for the next exciting installment !!

 

 

[Paul Edwards]

Thanks for posting this Terry.   I was interested to read about how the team approach at Epworth Hospital is working.  Looking forward to catching up with you and Laura at the Melbourne catchup on 22 March.  It will be interesting for me to talk to someone else who's had stereotactic radiation.

[Nev Black]

Thank you for you posting Terry. Looking forward to meeting you both in Melbourne (annually for years to come) at the Catch up, and getting a few more details of your test results. 

Nev