The story so far!

11/01/2016 – Complained to GP of increasing frequency of urination, given PSA test, results 78.9 referred to urology clinic at local hospital.

26/01/2016 – Urology clinic rectal examination – advised it probably is cancer – a bolt from the blue!

16/02/2016 - MRI scan + whole body bone scan

23/02/2016 - Biopsy

10/03/2016 - Diagnosed with T4 N1 M1a prostate cancer (MA1 due to non-regional lymph nodes ) but a negative bone scan. Disease is Gleason 8 and Gleason 9 or grade group 4 and 5.

Started Hormone treatment Bicalutamide pills for two weeks then Triptorelin injection, then pills for another two weeks then discontinue pills but continue injections every three months – advised this to continue for life. Advised incurable, inoperable, radiography not an option due to spread to lymph nodes and surrounding area. Advised life expectancy 3 – 5 years but may be extended by early chemo-therapy.

09/05/2016 - PSA 4

10/05/2016 - Signed up for chemo 6 treatments of Docetaxel at 21 day intervals commencing in 2 days

12/05/2016 - First Chemo

2/06/2016 - PSA 1.5 - Second Chemo - side effects not too bad

23/06/2016 - PSA 1.09 Third Chemo – side effects a bit more wearisome more fatigue and breathlessness.

07/07/2016 - Hospitalised with a chest infection - intravenous anti-biotics and oxygen for six days.

13/07/2016 - Discharged from hospital with a five day course of oral anti-biotics to be completed still feeling pretty wapped

21/07/2016 – Fourth chemo PSA 1.22

10/8/2016 - Fifth chemo PSA 0.7

1/9/2016 - Sixth and final chemo PSA 0.55. Still very fatigued and breathless, CT scan booked for later in the month just to check that there is nothing untoward that did not show up in conventional x-rays.

Ct scan showed nothing.

29/9/2016 - Had to visit my GP, legs and ankles swelled up badly - prescribed diuretics

21/10/2016 - legs still swollen - GP had taken advise from a cardioligist who suggested that the problem was down to a reaction between the chemo chemicals and amlodopine which I have been taking for the past couple of years. The amlodopine was replaced with a mild beta blocker which combined with the diuretics seems to have brought the swelling down almost completely. Still have a problem with breathlessness after the least exertion.

21/10/16 - PSA 1.16 - advised its not uncommon for PSA to rise slightly after chemo.

5/12/16 - PSA 0.77

27/2/17 - PSA 1.5 I expressed my concern to the GP that the PSA had doubled in three months was advised that with such low numbers it was not a cause for concern.

18/05/17 - Breathlessness situation improving.

22/5/17 - PSA 1.87 my GP advises me that a small rise is nothing to worry about but she intends to advise the Oncology clinic of the readings. Annoying as I'm only now starting to feel fully fit again!

6 Replies

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  • "Advised incurable, inoperable, radiography not an option due to spread to lymph nodes and surrounding area. Advised life expectancy 3 – 5 years but may be extended by early chemo-therapy."

    The first thing you need to understand is opinions vary. You need to get at least 3 opinions from 3 different professionals. The major cutting edge treatment hospitals are the ones to be seeking. Depending on your age, physical shape, response to ADT and chemo there are hospitals that will treat metastatic prostate cancer with a curative intent. There are no guarantees with any of this but there are ways to put the odds in your favor.

    There are several guys on this site that have been told everything you stated in your post. Several of them have beaten the odds given to them and had to argue with doctors about treatment options. Be your own advocate and realize it will be a combination of yourself, modern medicine and determination to make things happen.

    Ron

  • I agree that you could be well-served to seek the medical advice/future care of a Genitourinary Oncologist who specializes in metastatic prostate cancer, at a location that can offer more sophisticated services than a local GP or Urologist. In what part of the world do you live? We can help you in that kind of search/referral to possible doctors, hospitals, .... and also to Prostate Cancer Support Groups that may meet regularly near where you live.

    Charles

  • Nobody, and I mean nobody, can give you, or any of us an expiration date. There's too many men here who have lived long past there supposed prognosis. My advice, sit back relax, and smoke a dube. I'm 7 1/2 years into a 10-15 year prognosis, and I feel just fine, except for the ADT side effects.

    Joe

  • You need a team of Professionals. No mention of a Medical Oncologist. I would seek out a Cancer Institute/Hospital of Excellence. John Hopkins, Mayo, MD Anderson, Levine Cancer Institute, Memorial Sloan Hospital, Etc. There are new things on the table today--we just had 2 new PARP, inhibitors approved in April. You have not been gene mapped yet, to determine mutations. There are targeted, Immunology trials, and targeted drug trials, all over---getting to them, usually, occurs faster, thru a Cancer Center of Excellence.

    Best Wishes.

    Nalakrats

  • You should be expressing your PSA concerns to a urologist or oncologist. A GP isn't the best doctor to be talking to on this subject.

  • Thanks to all you good people for your replies. I should have explained that I live in North Scotland so although I am definitely not knocking the NHS, opportunities for "shopping around" are pretty limited.

    I was under the care of an Oncology team when I was receiving Chemo but was discharged from their care six weeks after my final infusion.

    I have just made an appointment with my GP for next Tuesday so I can request to be prescribed Arberaterone in the light of the recent announcements. My cancer has metastasised into my Lymph nodes but has not yet spread into my bones so I woould have thought I would be a suitable case for treatment.

    Best regards

    Cromone

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