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This is his Country or State Flag

Rob MacRob lived in England. He was 51 when he was diagnosed in April, 2004. His initial PSA was 252.00 ng/ml, his Gleason Score was 9, and he was staged T3a. His choice of treatment was External Beam Radiation+ADT. Here is his story.

This site has been so helpful to me over the last few years it is high time that I added my experiences to perhaps help and encourage others.

My first introduction to a PSA test yielded a welcoming figure of 235.0 ng//ml. This rose to 252.0 ng/ml by the time I met the Urologist. The DRE (Digital Rectal Examination) confirmed his thoughts and I was diagnosed there and then with prostate cancer. Before I could get out the door I was on Flutamide in preparation for the Zoladex implant three weeks later. No messing about for me then. The biopsy result just added the icing to this cake with a Gleason 9 rating.

Couple of years previously, I had mentioned to one of the local Docs that my flow had diminished somewhat. This was "my age" and dismissed there and then. I mentioned this again in 2004 and the PSA test was suggested. Two years beyond when the test should have occurred.....

"You are very young to get this" was the only crumb of comfort offered, and "pity we did not catch this a bit earlier", so off home I went; with a prognosis of about one to three years.

Three months HT [Hormone Therapy = ADT (Androgen Deprivation Therapy)] dropped the PSA into the 30s Bone scan clear.

EBRT (External Beam Radiation Treatment) ran through August & September. 36 sessions. Fairly severe bowel problems started three days into the treatments; "Not us" cried the radiotherapists, but it was. Major diet changes initiated.

Post R/T (radiotherapy) the bowel problems continued and the PSA dropped to mid 20s, and then slowly down to a nadir of around 5.0 two years after the R/T. A further bone scan showed clear.

Then the PSA started upwards again and Casodex was added to the Zoladex ( 2007). My testosterone level had never achieved true castrate level on Zoladex. This addition resulted in a drop to less than 0.1. Good enough for me ! and has been maintained to Sept. 2008.

My hope is that I can ease up on the hormone treatment, at least for a while, with Intermittent Therapy. We shall see.

Side effects of above treatments: Well, I think I can tick all the boxes, however fatigue and muscle loss have been the worst to deal with. Best side effect - I am still here.

So how does one deal with the diagnosis and prognosis I received?

A strict diet has helped the treatment along. Of this, I am convinced.

Careful consideration of any supplements. Research is essential with this. Including amounts taken.

I have been helped hugely by sites such as PCAinAZ and RalphV in particular. [Ralph Valle was diagnosed in 1992 and has been a tireless worker since then. He has been selected by the Prostate Cancer Research Institute as a recipient of the first Harry Pinchot Award for his "excellence in prostate cancer education, research, advocacy, and community support." He was also honored by the PCa education and support group Us Too International with the Edward C. Kaps Hope Award as "An Outstanding Leader in an Us TOO Support Group Who Has Shown Unselfish, Dedicated Service to Prostate Cancer Survivors and their Families."] YANA has provided me with much information as has the Prostate Charity website and others. For this I am grateful to all of the pro-active participants and those who run these sites for all of us to benefit. Being pro-active and positive I am sure does help all of us.

Best advice given to me for PCa.- Keep active but rest as soon as you start to get tired.

UPDATED

May 2009

Time for an update.

I have been off Zoladex + Casodex for about eight months now. Just taking Avodart. Unfortunately the energy levels I was hoping for have not returned as yet.

Testosterone level still low; around 3 NMOL/L. Still following the strict diet, which I am sure has paid off. No huge hardship most of the time as many of the cravings have long gone.In fact, many of the foods I used to enjoy are now viewed with distaste.

Oh, and the PSA is 0.2. So long as it does not rise too much if the testosterone rises further, then I shall be pleased.

UPDATED

June 2010

Time for an update or Terry will be chasing me.

The period off hormone treatment lasted over a year. Unfortunately as the testosterone slowly recovered a little; the PCa did as well. So just as I was starting to feel a little benefit by way of energy, hormone treatment has been resumed.

Trying Zoladex + Avodart to start with and monitor PSA, currently at 2.2 ng/ml. Casodex might need to be added ( as needed before ) in due course. Scans clear to date. Hoping for further off-periods for the HT providing the PSA responds well. I am still continuing with the strict diet which I am certain has helped my case.

Now six years from diagnosis. And a very glum prognosis at that time. So as well as changing tastes and diet, I have changed the medical opinions. Something I would like to keep doing for a long time.

UPDATED

May 2011

It is now seven years since diagnosis and an update is due.

The addition of Casodex in October brought the PSA down and is currently at 0.4. On Zoladex + Casodex + Avodart + Vit D3. I have recently added some Pomegranate Extract and Resveratrol which I will try for a few months, as I would like to get the PSA down further if possible.

The addition of Casodex, as happened before, has affected breathing a bit; it is not just the muscles which suffer with the treatment. And of course the fatigue is well established again. However, life at a slower pace is better than one particular alternative.

I continue with the diet; rarely have any meat now but do eat seafood.The mood swings I noticed in the early days of treatments do not seem to have affected me much in this round of ADT so far. A few flushes but these seem to be controlled by having Soya in the diet and are barely noticeable. So generally this second round of hormone treatment has been more bearable than the early days. I would like more energy though!

UPDATED

May 2012

Tried coming off the Casodex 50 mg but continued Zoladex & Avodart. Unfortunately PSA; started rising so back on Casodex, at least for a while. After three months PSA; dropped from 1.6 to 1. Hopefully it will drop further.

Still much fatigue , otherwise life is o.k.

UPDATED

July 2013

Quite a busy year. The Zoladex + Casodex + Avodart were controlling the PSA; reasonably well but failing to get it down below 0.1 which I had hoped for again. I had a feeling the recurrence was in the prostate despite the R/T in 2004. This was confirmed by scans with no other signs of P.Ca. visible elsewhere.

After some discussions & careful thought I was offered surgery to remove the prostate. Over eight years from diagnosis ! This was carried out with no problems six months ago. I was discharged the next day & did not need painkillers once I was home again. Just tired and I found it rather slow to get walking well again . The operation has caused incontinence which is a higher risk with a salvage prostatectomy . This may or may not improve over time. Although a nuisance, it is no more than that providing one plans ahead . The histology confirmed lymphs were clear ( some removed from each side ) but did show a couple of positive margins. Not unexpected.

PSA started to rise over the following months so at 1.3, I decided to resume some hormone treatment ; Zoladex + Avodart for the time being. I may try adding Casodex again if PSA; does not respond well, but it is good to have a break from the breathlessness Casodex seems to exasperate.

I am pleased to be a prostate-free zone and hope the surgery has at least pushed the clock back a bit more. In 2004 surgery was considered out of the question in my case. Whether I would have done better or worse if I had the surgery then, followed by the R/T , will of course always be unknown.

I continue with the fairly strict diet and a few supplements.

UPDATED

August 2014

Time flies by so time for an update.

PSA continued to rise so Casodex was added again to the Zoladex to see if any further benefit was available. After a small drop (from seven to five) it doubled again so Casodex was dropped. Testosterone level is still a bit high on Zoladex so will try monthly shots to see if it will reduce. If not, may need to try one of the newer hormone treatments now available such as Enzalutamide or Abiraterone.

The surprise is that although a bone scan last Autumn was clear and a recent MRI showed only recurrence in the prostate bed, another scan (F18 Choline) has revealed widespread bone mets. So just over ten years since diagnosis I am truly systemic. Not a bad run though considering the original figures.

Whether the surgery will have provided benefit in slowing progression in the future remains unknown. I am still convinced the diet changes slowed progression and will continue with my regime.

UPDATED

July 2015

Due to a slightly rising PSA; I had a PET/CT scan about a year ago. This revealed some recurrence in the prostate bed (after surgery in 2012).So the surgery did not quite get it all as hoped for. Although I knew the risk of recurrence was high, I have no regrets in removing the original tumour.

I was discussing some salvage treatment (possibly further surgery) when a second scan revealed spread to bones - ribs, collar bone, some vertabrae and pelvic area. So all thoughts of further local treatments ended abrubtly unfortunately. However, not a bad run considering the original diagnosis.

The PSA; took off last Autumn so started Enzalutamide which brought the figures down but not below about 4. Over the last few months PSA; has risen so added Dexamethasone as the testosterone level was still quite high. This has reduced the T. level to below castrate for the first time ever and seems to have slowed the increase down somewhat. Whilst I am getting some benefit from Hormone Treatments I will continue with this regime.Other than fatigue and a few minor aches I remain active !

At some point I expect the PSA; to rise substantially and that will be the time to consider chemotherapy.

I continue with the careful diet regime and remain convinced this has served me well over the last eleven years.

UPDATED

September 2015

[Sadly, we were informed that Rob passed away on Tuesday 15th September. His wife Michelle said that the end came peacefully after just three days in a nursing home. During the previous month, PCa had spread rapidly in his liver. Rob was just 62 and was diagnosed with PCa in 2004.

George Hardy commented that many members had the pleasure of knowing Rob for over 10 years, and of course many have met Rob and Michelle at the annual get-togethers. He was one of the nicest men you could wish to meet, and his knowledge of PCa was immense. He researched the illness thoroughly, and I don't think anyone will forget his tremendous participation on PCa forums since 2005.]


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