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This is his Country or State Flag

Peter EB and Angela lived in England. He was 65 when he was diagnosed in December, 2007. His initial PSA was 1121.00 ng/ml, his Gleason Score was 7, and he was staged T4. His initial treatment choice was ADT-Androgen Deprivation (Hormone) and his current treatment choice is None. Here is his story.

I noticed a lump in my groin which turned out to be a lymph node infected with cancer. Up until then I had none of the usual symptoms.

I then went for the internal examination, bone scan and biopsy and was diagnosed with advanced prostate cancer (T4N2MX)on 22 December 2007. In early January 2008 I started hormone treatment and after 3 months my PSA was down to 2.1.

After two more 3-month sessions on hormones my PSA stabilised below 1.0 but I sometimes suffer with extreme fatigue and hot flushes (flashes). At the moment I am on a 'holiday' from treatment with my PSA static 0.1.

Went to the doctor this week (April 2009) and we decided to hold off from treatment for another three months. Every three months I expect the my PSA to have risen - one day it will have.

I am a director of a project management with no thought of retirement yet.

UPDATED

December 2009

After nearly a year without treatment and my PSA remaining at 0.1, it jumped to 0.26 between July and October. So, back on the treatment and we'll see what's happened in January 2010.

UPDATED

March 2011

Things have been pretty good since December 2009. After the jump in July 2009 my PSA stabilized at around 0.1 and stayed that way in each of my three-monthly blood tests until January this year (2011) when it increased slightly to 1.0.

I was without any treatment throughout 2010, but with the recent rise in PSA I'll be interested to see what my next blood test in April indicates. My symptoms are still very mild: occasional hot flushes, tiredness and some pain in my hip (which may be unrelated to the cancer and could be down to old age). I'm 68 now and still working full-time in my project management consultancy company.

UPDATED

May 2011

My PSA went to 13 in the April so I'm now back on the hormone treatment. In 2009, after a similar jump, it returned to low numbers in 3 months so here's hoping for the July blood test.

We returned to England in 2011.

UPDATED

January 2013

In July 2011 my PSA reduced to 0.69. I had two more depot injections of Suprefact over the next six months with no significant change of PSA so treatment was discontinued, although 3-monthy blood tests continued.

In August 2012 my PSA jumped to 9.0, so the same pattern of treatment was started again. By November it was down to point 0.8; I'm due another injection at the end of February.

In the 5 years since diagnosis I have kept a spreadsheet of the ups and downs of my PSA and the resultant changes to it's velocity. For what it's worth, it appears to be happening on a cycle of approximately 520 days (say 17 months). I hope it stays as predictable.

UPDATED

February 2014

Another year!

Things have changed since January 2013. Firstly, the 'stop-start' Suprefact treatment has been discontinued and I am now on injections of Prostap every 12 weeks. Secondly, my PSA has established a slight upward trend. The last four blood tests showed PSA scores of: 0.8, 1.3, 2.4 and 4.1, a doubling time of roughly 160 days. Still within the bounds of normalcy, and nowhere near the 1121 at original diagnosis.

UPDATED

March 2015

Castrate Resistant

I am now officially castrate resistant. My PSA climbed progressively from 4.1 in January 2014 to 57 by the end of January 2015. In June I started on Bicalutamide as a second line treatment but after three months this was replaced by Diethylstilbestrol; neither slowed the escalation of my PSA. A CT Scan last month indicated swelling in some lymph nodes.

So now it's: daily Abiraterone together with Prenisolone, 2-weekly blood tests and 3-monthly injections of Prostap. Blood test is next week - may you live in interesting times!

UPDATED

March 2016

Chemotherapy

Unfortunately Abirateron did not work for me, so after a rise of PSA from 57 to 445 in 6 months it was decided to move to chemotherapy with 10 three-week cycles of Docetaxel (Taxotere). My PSA started to drop immediately although there were modest rises in cycles 4 and 8. I have now completed the 10 cycles with PSA down to 163. My oncologist says we will continue with Prostap and review the situation in 2 months with the possibility of moving to Cabazitaxel (Jevtana).

I cannot praise the Chemo unit staff too highly at my local hospital. Always working, always helpful, and always cheerful.

UPDATED

June 2016

In the two months since completing a 10-cycle course of chemotherapy with Docetaxel my PSA increased significantly from 170 to 390. During that period the lymph nodes in my groin swelled (the left side to the size of a small egg) causing a 5 day stay in hospital.

It's now back on chemo., this time 10 cycles of Cabazitaxel. As I commented once before, Chinese proverb: "May you live in interesting times!"

UPDATED

December 2017

10 Years.

Yes, it's 10 years since my diagnosis. My PSA is 1025 which, after a roller-coaster ride over the past ten years is now close to the diagnosis value of 1121.

The 10 cycles of Cabazitaxel in the latter half of 2016 appeared to have no effect. So at a meeting with my oncologist in January of this year it was decided that there were no treatment options left and we would now keep a watching brief.

A good thing, because in mid-year the lymph nodes in my groin started swelling again, they were battered down with radio therapy. Unfortunately a side effect of this was the development of lymphedema in my right leg - basically the lymphatic system doesn't drain properly leading to a very fat leg. The swelling causes difficulty in walking so after a period using a stick, I now get about with a walking frame (Zimmer).

Also during this period the cancer in my prostate caused interference with the urethra and I experienced urine retention - not fun. I now have a catheter fitted -still not fun but more interesting.

All-in-all a busy year, but touch wood, still no pain.

UPDATED

April 2018

Peter died in the early hours of 1st April this year.

In December last year the lymphedema got the better of him, and he became wheelchair bound. His catheter became more and more problematic, blocking almost as soon as it was cleared, necessitating many visits to A&E.

At the end of February he went into the hospice for a minor procedure, but within 24 hours of being discharged, he was back in A&E with another blockage. This time we managed to get him admitted onto the urology ward in the hope of having a suprapubic catheter fitted, once they had stopped the bleeding. In order to do this he was fitted with a three way continuous irrigation catheter, but by this time his haemoglobin levels had dropped to 4 g/dl (the normal for men is between 14 and 18 grams per decilitre) and despite 12 units of blood his levels didn't rise for more than an hour at a time. His blood pressure had also dropped to 98/38 despite being on a drip.

Eleven days after being admitted to the ward, all active treatment was stopped, and within a few hours he passed peacefully away.

It all sounds pretty grim, and indeed it was, but throughout his ten year 'battle' with this cruel disease, it caused him no pain, it appeared that he died of exhaustion.


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