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My story - Graham Wiese


GrahamW

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I was diagnosed in March 2006 at age 59. PSA was 6.1 and the DRE indicated involvement of a seminal vesicle. I had a TRUS biopsy that produced a Gleason score of 9 (4+5). Bone and CT scans were negative.

It had been 4 years since my previous DRE, when the gland felt “nice and smooth” (that’s what she said!).

The urologist who did the biopsy wasn’t really able to tell me anything that sounded positive. He explained how serious it was and sent me off to decide what treatment I wanted, after saying there was no established way to handle such a case.

My wife came with me on the next visit as I was struggling to take it all in. After hearing that if I was 75 I would be put on watchful waiting (the exact words were “sent away and told not to start reading ‘War and Peace’”), we decided to seek a second opinion.

 So I saw a second urologist, who sent me on to radiation and medical oncologists. They all recommended surgery, to be followed by adjuvant treatment based on the results. While waiting for the surgery I was given hormone treatment, a 3.6mg Zoladex implant with daily Casodex for a month, with the aim of putting the brakes on the tumour. The last PSA result before surgery was 0.16.

The urologist also sent me for an endo-rectal MRI (which I had to pay for myself), to assist him in his preparation for the operation.

I had open surgery at the end of May 2006. Pathology results were:

·      Gleason 9 (4+5)

·      Tumour extent unifocal

·      Focal capsular penetration but all margins clear of carcinoma

·      Left seminal vesicle involved

·      No lymph nodes involved

PSA 6 weeks after surgery was <0.01, but I had hormone therapy before.

The recommendation from the team was that radiotherapy should be held in reserve, but that I should proceed with chemotherapy and hormone therapy.

Taxotere was not available to me on the PBS. I was given 4 cycles of ‘MC’ (Mitoxantrone and Cyclophosphamide), with 3 weeks between each cycle. At the end of this the PSA was 0.05.

Immediately on completion of chemo, I was started on 3-monthly Zoladex implants. PSA dropped straight away to <0.01. I was kept on Zoladex for 2 years (8 implants), which gets us to late 2008.

At this stage we moved from NSW to Victoria, so on to a new urologist. PSA was monitored every 3 months, and in the autumn of 2010 it started to rise. I don’t have the numbers, but once it got going it was rising quite quickly, doubling about every 8 weeks.

I had bone and CT scans (negative), and discussions with radiation and medical oncologists. I also had an FDG PET scan (negative - although I had been warned that they don’t often show anything for prostate cancer, especially with relatively low PSA).

After all that I went back on Zoladex late in 2010 and responded immediately, with PSA falling to <0.04 (new lab). I had 2 implants, followed by further 3-monthly PSA monitoring.

Late in 2012 I went through the same cycle of rising PSA followed by 2 Zoladex implants, although the hormone therapy didn’t get the PSA down quite so low this time.

Second half of 2014 – same thing, rising PSA and more Zoladex. But this time after the second implant the PSA rose from about 0.6 in September to 1.2 in December (again, I don’t have the exact numbers).

So I was booked in for a PSMA PET scan at Peter Mac, which I had in February 2015. That showed a spot in the prostate bed plus a single lymph node, with no bone involvement. I feel very fortunate that this scan became available pretty much at just the right time for me.

 

I was then referred to radiation oncologist Dr Pat Bowden at Epworth. By the beginning of May I will have completed stereotactic treatment of the lymph node and 7 weeks of IMRT to the prostate area. PSA immediately prior to the start of radiotherapy was 1.84, and I am continuing on Zoladex. 

 

Update: November 2015

 

The radiotherapy was completed at the beginning of May 2015.

Since then, PSA was 0.68 in mid June when I saw Pat Bowden, then 0.29 in late September when I saw Mark Frydenberg (my urologist). Given these results, Mark wanted to stop the Zoladex. I will see Pat Bowden in December for the next checkup.

 

 
 
 
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Hi Graham,

 

Sounds like you are in the right place and I wish you all the best!

I also have Pat Bowden as my radiation onc.  great guy!

I had a PSMA scan like you and they found a node in the prostate bed and also a liver met  (very unusual)

I had 5 weeks of salvage radiation of the prostate bed like you are having ending on 2412/14 and later also 10 sessions of stereotactic radiation afterwards for the liver met.

I am happy to say that it was successful and my PSA has now dropped to 0.64 as of 15/04/15

Both the medical onc and the radiation onc are very please with the result.

I think the PSMA scan is a really great leap foreward and we are lucky to be the recipients of the results

Wishing you the best of results

Terry

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alanbarlee

Great post Graham: many thanks for your detailed and optimistic news!

Keep us briefed on your progress - and the best of luck with the combined Zoladex and radiation therapy. You've hit the mets with both barrels, and you still have the arsenel of Zytiga and Xtandi up your sleeve (post failed Mitoxantrone chemotherapy?), as well as Taxotere and Cabazitaxel, and more stereotactic radiation, if you should happen to need them down the track.

Alan Barlee

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Charles (Chuck) Maack

Well explained, Graham. So thankful you moved away from that initial Urologist.   It was good that you were not administered Radiation Therapy any earlier, since with the more recent evidence of lymph node activity, and likely a pelvic lymph node, your Radiation Oncologist likely included some extra targeting to that lymph node area in addition to covering the entire prostatic bed and its periphery.  I note that though you had returns to Zoladex, you apparently were never again prescribed Casodex, or more likely its generic bicalutamide.  That will continue to be another medication in reserve should you experience future PSA rise.  The 5AR inhibitor dutasteride/Avodart could also be considered.  And as others have made note, hopefully waaaay down the line could be Zytiga/abiraterone acetate and/or Xtandi enzalutamide.  

 

Have you had QCT or DEXA imaging to determine whether osteopenia or osteoporosis is present?  Another check can be determine any bone resorption by having you urine tested with a Pyrlinks deoxypyridinoline Dpd test.  With the more advanced cancer at diagnosis as well as the aging process, quite often osteopenia or osteoporosis are also in development, so good to check.  

 

Other considerations to discuss with your Medical Oncologist is a check of your Prolactin level with reasoning explained here: http://tinyurl.com/7w5omeo and for diet and supplement considerations, please review this: http://tinyurl.com/6z5l8fm 

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Thanks for the replies and encouragement. I am indeed optimistic, in fact I have been ever since I started seeing Phillip Stricker in Sydney (the second urologist mentioned above). He was very positive in his approach and attitude to my case.

Chuck, thanks for your advice and the links. With respect to diet and nutrition, I haven't read the document fully yet but I believe I'm pretty much in tune with it. Snuffy Myers has been a guiding light since his book on hormone therapy and diet first came out (2007 I think). I gave up red meat and dairy products very early in the journey too, although I must admit I sneak in a little bit of cheese occasionally!

On a couple of specific points, I have regular bone density checks, so far with good results. I have another scheduled in a few weeks after the radiotherapy is finished.

And on the lymph node issue, the affected node is the left internal iliac and it is being treated separately from the prostate bed by stereotactic body RT. It's close to the pelvic bone so a little way from the prostate area. Right now in my RT sessions I am getting the two separate treatments, with a position change between them.

Lastly, I should confirm that I have not had Casodex since that month prior to my surgery.

Graham

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Charles (Chuck) Maack

Since the Zoladex only shuts down testicular production of testosterone, an antiandrogen (bicalutamide, generic of Casodex is usually prescribed) continues to be necessary since the adrenal glands also produce testosterone, albeit not to the extent of that produced by Leydig Cells in the testicles, but even the adrenal gland production ramps up a bit as a consequence of the testicular route shutting down.  Without an antiandrogen, the adrenal gland testosterone has free access into the cancer cell nucleus and on the way comes in contact with 5Alpha Reductase (5AR) enzymes and converts to the more powerful stimulant to PC cell growth and proliferation, dihydrotestosterone/DHT.  And that's where the 5AR inhibitor dutasteride/Avodart comes in to inhibit that conversion.  With your Gleason 9, all ammo should be used to conquer.

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  • 6 months later...
 

I have updated my story with some PSA results from the months following radiotherapy.

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