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Terry Crook lives in Victoria, Australia. He was 62 when he was diagnosed in August, 2009. His initial PSA was 3.28 ng/ml, his Gleason Score was 7, and he was staged T2. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is Other (Other). Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

I (we) have just been diagnosed and are wading through our options. We are at present in shock!!!

So far, we have seen a local urologist and will be getting second and third opinions shortly from another urologist and a radiation oncologist. Details regarding my situation as known at the moment are as follows:

PSA=3.28
Gleason Score=7 (4+3)
Staging=T3b
Bone scan negative
CT scan shows prostate enlarged with well defined planes and no evidence of invasion into surrounding structures.

More to come after we have seen the specialists and make the decision.

Later:

We live in Ballarat and have spent the day in Melbourne about 100km down south. We saw Prof Tony Costello in the Epworth Centre in his rooms and were very impressed. He did a DRE (Digital Rectal Examination) and he reckons it is T2. Isn't amazing how some things can make you feel good???? He also said that it was mainly left side and that he hoped that he could spare the right side nerves. I hope so too! I never really appreciated medical humor before!! The T3b diagnosis seems to me to have been made before all the data was in (ie CT scan and bone scan) relying only on the DRE.

He (Tony Costello) advised a Robotic Laparoscopic Prostatectomy and follow up with Radiation. I believe this is the route we will eventually follow but we are still to see the radiation oncologist next Tuesday.

This is a real crap situation to be in and I really feel for all those that have gone before me My wife, my partner, is with me in all this and I feel her pain more than I feel my own. I will update next week after radiation guy has had his two bobs worth.

Later:

Well, we saw the radiation oncologist Tuesday October 6, 2009. I must say that we were terribly un-impressed. The fact that she got the Gleason scores wrong and after doing a DRE herself launched off into a nightmare scenario. She advised hormone treatment initially and then probably 5 weeks IMRT (Intensity Modulated Radiation Therapy) here in Ballarat : then off to Melbourne for high dose brachytherapy over a few days. At this point my mind shut down. I was very polite to her although I felt otherwise.

My God! What a situation to be in! It is hard to believe that these specialists can make decisions on peoples lives with such profound results without all the facts of the case at hand. I suppose like many that have come before me, after doing all the research and finding out all of the options; consulting with urologists and radiation oncologists etc we have to make a decision.

In my case it isn't quite as difficult as I first thought. Due to the aggressiveness of the cancer, watchful waiting wasn't an option. Brachytherapy similarly was dismissed as the staging T2 to T3 left too much doubt as to the long term outcome.

That left really only two options as far as I am concerned :- Surgery or Radiation. I am of the mind personally that given the two options I would choose surgery.

My reasons are that I would know for certain how far the cancer had spread and just how aggressive it was after pathology tests on the removed prostate. I would also have options of radiation in the future if my PSA showed signs of rising. I think the side effects of radiation are maybe ?? not quite as bad, (at least initially) as surgery, but the peace of mind of knowing that the cancer is removed is every bit as valuable.

It has came as quite a surprise to me to find out just how much I always believed that specialists in their field really knew what they were doing. I have found it quite otherwise to be the case. I think they all really believe they know it all and that we should just do as we are advised and to question their judgement is tantamount to sacrilege. Even to request a second opinion is seen as almost a slur on their competence.

Anyway!! To come to a conclusion. I have decided on Robotic Laparoscopic Surgery. This is to be followed up with radiation. I don't have the exact details as yet but the operation is scheduled for early December.

In all this I just hope that others have support of their partner as I have. I have been told in no uncertain terms that "we" have prostate cancer and that "we" had just better get on and fix it!!

UPDATED

March 2010

March 11th 2010. Had the operation on 1st December at the Epworth (Richmond, Melbourne). Went in on the morning of the operation and stayed overnight. The next morning they let me out and we went back to the hotel for another night before returning home to Ballarat. This is where the recovery begins!

The pathology report on the removed prostate was as follows:

The conclusion: Robotic radical prostatectomy bilateral adenocarcinoma Gleason pattens 4+5=9 (Cribriform). Multiple foci of predominantly perineural extraprostatic extension, right apex (2mm), left apex (10mm) left bladder neck (6mm) right posterior (13mm) and left posterior (20x3mm). Seminal vesicles and pathological margins clear. Vascular invasion noted, pT3a.

This was worse than we had hoped but it proved that the prostatectomy was the best option as with radiation, we would not have known the extent. And as Professor Tony Costello said, the best place for it was in the bucket!

We saw the surgeon a month later for a check-up and then again recently for three month check. I had had the first PSA which was 0.04 which was a relief to us both. No radiation is planned at this stage or until PSA is 1.00 [Surely IF the PSA reaches 1.0 ng/ml?].

As far as post operative after effects are concerned, I had urethral and perineal pain for quite a while and was on anti-inflammatories for some weeks but this is now completely gone. Incontinence lasted for five weeks and then improved dramatically. Currently just using one pad a day which is "just in case". Still get caught if I sneeze!

The ED is an issue which we are currently working on. The pills do not seem to work except for a "glimmer" so we are about to embark on the injections which we hope will work! I am now back at work full time with a different view of the world and I didn't know that there were quite so many butterflies and roses!

As far as our choice of surgeon is concerned, we know that we made the right choice. Now we wait and see, but in the meantime am having pomegranate juice daily, Resveratrol, green tea and anything else that she can find for me!

UPDATED

May 2011

September 2010: Went for next three monthly check and found that my PSA had risen to 1.2. Not good news. My specialist, Professor Tony Costello said that I should commence ADT and gave me a shot of Eligard there and then. No immediate side effects but about a month or so later began to feel all the side effects that we had read about - weary, no energy and poor temperature control. I am still working full time but find that I am extremely weary by the end of the day.

December 2010: Back down to Melbourne for the next shot of Eligard and very pleased that the PSA now gone down to 0.07. Still feeling the effects but I think that you sort of get used to them after a while. However, I might add that I am really looking forward to coming off the Eligard. Asked how long I would be on the dreaded Eligard and was told for 12 months.

February 2011: PSA now down to 0.05 (keep going down!!) Nothing else to report except that Professor Tony Costello has a GP who specializes in Prostate Cancer joining his team to monitor his patient's general health issues. This is very good news.

March 2011: Went for our initial visit to the GP who has now joined Professor Costello's team. She is very thorough and sent me off for all sorts of blood tests and Dexa-scan to see exactly where my health is at this time. We were very impressed by her.

Laura here: I am very relieved that someone is now taking care of Terry's overall health which I realize is in for a bit of a battering from the ADT. I can do the diet and supplement and researching stuff but not the medical monitoring. I asked her to check Terry's Vitamin D and Selenium levels too as I believe this to be important. By the way, we have had a complete change to our diet since Terry was diagnosed and we are now on a low fat, Mediterranean diet. We do not eat red meat and our diet consists of chicken (no skin) fish, and lots of fruit and vegetables. We use olive oil only (light for cooking) and extra virgin for salads. The supplements that Terry is taking are: Resveratrol, Pomegranate capsules, Vitamin D, Bio-Curcumin, Omega-3s, Selenium and Caltrate Plus. I am sure that this diet change is good for us both!

April 2011: Back to see GP for results of all those tests. Most of the test results were ok considering (Vitamin D and Selenium levels good) but cholesterol (LDL) was a bit too high. I will try and fix this with diet and exercise before considering drugs. The biggest problem is that the Dexa -Scan has shown that I have osteopaenia. We do not know if this is from being on Eligard for six months or if I may have already had it. However, the problem is what to do about it now. GP suggested that we investigate the available options for treating the osteopaenia. She mentioned that Bisphosphonates were the commonly used drugs, although there are some others being trialed which do not have sufficient data regarding men with prostate cancer at this time. The crazy thing is that if you have not already had a break, you have to pay for the drug! They are only on the PBS (Pharmaceutical Benefits Scheme) if you have broken bones already. We do not like the sound of the bisphosphonates and will keep researching before making a decision. If anyone out there has some words of wisdom we would really like to hear from you! We have to go back for what we hope is the final shot of Eligard in June so will keep you posted. In the meantime, we are about to move house and we can't wait! This is something that we have been working towards for a long time and it is about to happen.

Laura here: Terry will have lots to keep himself busy with for many years to come! I am also trying to persuade him to retire from full time work and just do some work as and when he feels like it. I think that he is beginning to hear me!

UPDATED

July 2012

Had final (fourth shot) Eligard on 6th June 2011. PSA was then 0.027.

Next PSA done three months later and was 0.024. Relief! We were told that the next PSA test should be done in six months which we did in March 2012. This PSA was 0.144. Not so happy now but despite this we were told not to have another test until December 2012. This seems much too long to us given the quick doubling time. We decided to get them done (via our GP) every three months so that we could keep a close eye on it.

Much to our dismay when we had our next PSA on 25th June 2012 the result is 1.19. Very worried now as it shows a doubling time of just over a month. What will it be by December???

We are now trying to investigate the options. Is it time for a medical oncologist? We are still with our Urologist currently. Should we have radiation?

As we are in this state of flux at the moment we will update again shortly when we know what path needs to be taken. Any advice would be greatly appreciated from those who have gone before and had a similar experience.

UPDATED

December 2013

Sorry it has been so long between reports.

19/7/12 Bone Scan to check for metasteses .... all clear.

20/8/12 Saw my Urologist, and after a good talk decided to continue with the waiting till December.

19/12/12 PSA 10.9 Bit of a shock! Started next series of Eligard (LHRH Agonist) 3 monthly injections.

Had bone scan to check that no metasteses. Left hip showed a bit of a problem.

20/12/12 Had a check with CT Scan on hip and thankfully showed arthritis. That damn hip has been a bit of a problem for some time now.

January/13 Saw GP part of the team following my general health .

Bone density/cholesterol/urine/D/Selenium etc all within limits...at least some good news.

19/3/13 PSA 0.7 Second injection

17/06/13 PSA 0.57 Third injection

12/09/13 PSA 1.01 Fourth injection. PSA rising while on medication...not the result I was hoping for. This was a bit of a shock as it showed a doubling time of about 3.4 months.

Appointment 11/12/13 with Urologist.

PSA 1.5 this showed a doubling time of about 5 months... better than last time.

I was meant to be off medication now if everything had gone to plan. Alas not to be.

I am now on continuous hormone treatment, but with a change from Eligard to Lucrin (same stuff...luprolide acetate) 3 monthly injection, but now in the butt, instead of the belly fat. In addition I have started on Cosudex (bicalutamide 50mg anti-androgen) daily tablet.

A few immediate side effects from the change in medication ... sleeping problems and a little nausea, but nothing serious.

My Urologist has now implemented a team approach of a combination of speciaists who analyse each patients data.......damn good move!!

I have an appointment with the GP of the team in January for a general checkup and any tests that seem to be warranted....Cholesterol , BP etc.

Generally I am in very good health, although I have put on a bit of weight, especially in the belly region. I am going to try hard to keep it down, with exercise and good diet. Still on Mediterranean diet, no red meat or dairy or eggs. Still taking supplements of vitamin D and others. Trying to cut down on sugar, but I have always had a sweet tooth.

Have recently started a meditation course with my better half and together we are trying to lead a less stressful lifestyle. Seems to be working, but with Xmas coming up...who knows.

UPDATED

March 2014

Heard from Urologist. They have implemented a team approach now and they want me to have a MRI of pevic region to see if they can find out why PSA is rising while on medication.

Had MRI on 17/01/14 at Epworth Melbourne (Richmond)

Unfortunately I have hurt my hand when an electric drill jammed and twisted my wrist. TFCC damage.

Had an X-ray but could not identify problem, so GP wanted a Bone Scan of the wrist. The scan they did was a whole body scan with spect on 20/02/14, so I forwarded a copy to my Urologist ..... dont know if it will help or not.

Cancelled visit to Jane Crowe GP for general health, partly because of my wrist and partly till after I hear from Tony Costello re the MRI result.

Playing the waiting game. Tony Costello wants me to see a rad oncologist Patrick Bowden at the Epworth Richmond about my left hip as he thinks it may be a metastasis and to have stereotactic radiation, similar to what Faroudi is doing at the peter Mac.

This has come as a bit of a shock as I thought from previous scans that the hip problem had proven to be arthritis.

25/2/14 Had a meeting with Patrick Bowden (nice guy)and he, after reading my MRI told me that he wanted to do Stereotactic radiation to two metasteses (one in my left hip and one other pelvic met)

This was to be over ten working days starting 13/2/14 with a total dosage of 50gy. The same day I was measured and fixed in position for a CT scan so they could calculate the beams necessary to do the job. Whole new learning curve fo me!!

Google is certainly getting a bashing.!!

UPDATED

June 2014

Had the Stereotactic radiation to both bone mets (one in left hip joint socket and one on right Iliac crest).

As well decided to kill two birds with one stone; so saw the team GP Jane Crowe, who ordered a heap of blood tests as well as a DEXA scan for bone density. She also ordered a special Heart calcium scan to see the cardiac risk as this is a known problem when on ADT (Androgen deprivation therapy). This was done at another imaging place Melbourne. This scan showed a low risk thankfully. Not covered by Medicare and costs $200. Worth it in my case as I got a good result.

30th May saw the radiation oncologist and got a good result here too. PSA 2.15 down from 2.77 before radiation. Was advised that this was expected and that it should go down hopefully to PSA of 0.2 It may take up to a year to get to lowest point. Staying on ADT continuous (Lucrin 3 monthly + Cosudex 50md daily) it seems. If PSA starts to rise it may mean more bone metasteses that were micro when last scans were taken and more stereotactic radiation in the pipeline.

Due for next ADT shot end of June but will not have PSA till late August when I am due to see radiation oncologist again.

UPDATED

June 2015

PSA rising while on ADT

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.
Late October PSA going up now 8.1
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.
HER2 variant... mainly found in breast cancer

Monday 3rd November 2014
Start Salvage Radiation to prostate bed.
This will be 37 sessions Monday to Friday each week ending Xmas Eve.
PSA still going up ...now 13.4 early January
Tuesday 6th January 2015
Start Stereotactic Radiation to liver ... 10 sessions 50Gray
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 !!

UPDATED

August 2015

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)

6 Aug 15
PET PSMA scan at Monash Moorabbin Hospital

12 Aug 15
Ben Tran appointment

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.

Sept 15
PSA before streotactic treatment for baseline.

2 Sept 15
Start of stereotactic treatment

And so it goes.....which is fine with me as long as it keeps on going!

Terry's e-mail address is: tlc AT netconnect.com.au (replace "AT" with "@")

NOTE: Terry has not updated his story for more than 15 months, so you may not receive any response from him.


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