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Terry Crook and Laura live 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 although he was told he was staged T3b, this is clearly not his clinical staging which appears to be T2a or T2b. He is undecided as to his choice of treatment. Here is his story.

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!

Terry's e-mail address is: tlc@netconnect.com.au