henk1956



Personal data - diagnosis

Personal data

Visible name: henk1956
Ctry: GREAT BRITAIN
State/Province: Herts.
Year of birth: 1956
Age: 65
Occupation: Pilot
Hobbies: Flying
My Website:

Data at initial diagnosis

Date: 10.08.2001
Age at diagnosis: 45
PSA: 19.60
Biopsied? Yes
TUR-P? No
Gleason Score:
TNM-Stages:
Remark: T2G2NxMx

Maximum measured prostate volume

Date:
PSA:
Volume in ml or cm³:

Postoperative pathological data

Date: 10.10.2001
Gleason Score:
pTNM-classification: 3 1
Margins:
p-L-V-P-G-Findings: pT3G3
See stories of:

Prostate cancer treatments

** PSA level at the start of the treatment
from to PSA** Type Clinic City
01.10.01 19.60 Open surgery Mil hospital Utrecht
01.11.03 15.12.03 0.90 other RT Mt Vernon Nothwood
01.12.08 0.30 ADT1 Mt Vernon Northwood



Drugs

NEM = Nutritional supplement
from to Medication Quantity / unit of time
01.03.02 01.11.03 Casodex
01.12.08 Zoladez 10.8 mg every 12 weeks
Quantity per D / M / Y etc.


PSA-History    ng/ml    logarithmic

PSA-History    ng/ml    linear

PSA doubling times in years

Doubling time is greater than previous period.
Doubling time is smaller than previous period.
* Calculated backwards for 1, 2, 4 and 8 periods.

Limit = 3 years


Calculation of doubling times in days

Doubling time in years:
Doubling time in days:
Date PSA 1* 2* 4* 8*
01.08.01 14.40
01.10.01 19.60 0.38
01.11.01 0.40 -- --
01.03.02 0.90 0.28 --
01.12.03 0.20 -- -- --
01.09.08 7.60 0.91 2.11 --
01.03.09 0.20 -- --
01.08.09 0.10 -- -- --
01.10.09 0.10 -- -- --
01.01.10 0.10 -- --
01.10.10 0.20 0.75 1.00 --
01.02.11 0.30 0.58 0.68 0.95 --
01.07.11 0.30 1.28 1.10 12.97
01.10.11 0.30 1.10 --
           
           
           
           
           
           
           
           
           
           
           
Date PSA 1* 2* 4* 8*
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           

My Story

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Date Δ 

Last PSA from

Personal stories

       
17.08.2011 0.30 01.07.11
NETHERLANDS July 2001: Saw GP with complaint that passing water "seemed" restricted. After the compulsory finger up back passage, he sent me to see urologist in hospital. Ultrasound revealed suspect tissue on both left and right side. Biopsy revealed cancer (T2G2NxMx).

Aug 2001: Had bone scan. Clear!!

Oct 2001: Urologist discussed options with me and I decided on Radical Prostatectomy. Was operated on Oct 9 and was discharged on Oct 15. Oct 30 catheter removed. So far so good, I was happy.

Nov 2001: Post-op findings:
- PC not confined to gland;
- One lymph node positive for cancer;
- Post-op conclusion by Pathologist: pT3G3N1M0 [i.e. Gleason Score 7 or 8 maybe 9, stage T3 with lymph node invasion but no evidence of metastasis]
- Pre-op PSA 19.6: post-op PSA 1.1
- PSA now (November 2001)0.4

March 2002: PSA 0.9 so obviously cancer still "ticking away" somewhere in body. Problem for urologist, he does not know where, so he says he cannot treat it. I insist on some form of treatment and he puts me on Casodex.

UK October 2003: Posted to UK. Saw oncologist at Royal Marsden in London. MRI-scan performed and advised that I should benefit from "Radiation Therapy".

UK November 2003: Had Radiation Therapy at Mt Vernon Hospital. Lasted 5 weeks. No side effects apart from cramps and "loose bowels". Soon disappeared. PSA after radiation 0.2 Me very happy!!!

UK 2004: Had another bone scan: Clear!!

UK 2004 - 2008: Watchful waiting. PSA slowly increasing. From 0.2 to 7.0. Blasted PC just won't give up. Thing that worries me is that it doubles every three months for the last twelve.

UK Sept 2008: I am told not to worry. Chances are that I will die of old age rather than from PC.

UK Dec 2008: Had another CT- and bone scan. Oncologist very surprised with results considering relatively low PSA: Now have secondary cancer in lower spine, ribs and lymph nodes. Bit of a shock!! Especially when told that my quality of life cannot be guaranteed past 2009.

UK Feb 2009: After playing with the idea for a few weeks, I have now taken early retirement and am enjoying life with my wife. In the mean time I am on "Zoladex". Lets wait and see if it makes a difference. Will keep you updated.

Later: After having been prescribed Zoladex in December 2008, my PSA dropped from 7.6 to 0.2 in March 2009.

When discussing this with the oncologist, she agreed that the PSA value itself was only an indication, but that the significant downward trend was a good indication that the Zoladex was working. When I asked her how that would affect my (secondary) bone cancer, she replied that it would most probably restrict/halt its growth for as long as the Zoladex was working which could be anything from 3 months to 2 years.

So the obvious question to ask was: is it not time for another bone-/CT scan to find out if the Zoladex is actually working? She agreed, but also said that since it was only 3 months since my last scan it would probably not show up any significant difference. We agreed to do another scan in another 3 months.

If any of you have a similar experience I would like to hear from you.

Keep in touch, Henk



UPDATED
August 2009





Have been on Zoladex since December 08. Last PSA in June 2009 0.1. Discussed the merits of a Zoladex "holiday" with oncologist but was advised not to do so unless I suffered serious side effects which I do not. Side effects so far are: no sex drive at all; putting on some weight, but that might also be the beer!! and I noticed that I am loosing my chest hair.

Have tried early retirement but decided to go back to work part time (50%) in September. Think it will be better for me and especially my wife!!

Will keep you informed of any changes.



UPDATED
October 2009





PSA check: still 0.1 Zoladex still working. Very happy about that!!

Asked about the merit of another scan. Was told that this was not necessary as long as the PSA did not show an upward trend. Still the usual side effects but not bad at all. Mustn't grumble. Also still working part-time. Keeps everybody happy.

Had to shop around for travel insurance; most of them not very keen on my medical condition. Obviously anything to do with cancer is excluded and I mean anything. If I were to trip and break an arm they would contribute that to the bone metastasis even though there might not be any in my arm. Not to worry, just tread carefully!!

When applying for a new mortgage I will not lie, but if they don't ask, I certainly won't make them any the wiser. That is it for now. Will keep you informed.

Whatever it is that you still want to do, go do it and above all....enjoy it!!



UPDATED
January 2010





UK Dec 2009. Zoladex still working. PSA steady at 0.1. Not sure how much longer this will continue, but grateful for every month that it does. Will see oncologist again in March. Was told (once again) no new scans untill PSA shows steady rise.

Symptoms and hormone side effects have not changed. Oncologist increasingly interested in my bowel movements. Did not ask him why, but as things had not changed did not want to either.

Will keep you informed of the results of my March visit.



UPDATED
October 2010





PSA still stable at 0.2. Had bonescan to determine if Zoladex caused any form of osteoporosis (apparently a well known side effect). It did; had developed mild form of osteoporosis so I was put on calcium supplements. [It is amazing, given the evidence available, that men are allowed to develop osteoporosis rather than being given preventative medication before the condition manifests itself.] Other than that, everything still the same. Determined to go for a "Yana Gold Medal".



UPDATED
February 2011





Still here and still working. Last PSA check slightly up: 0.3. Although rising trend, it is minimal and no cause for worry just yet. Not until rising rapidly according to oncologist.

Now wants to see me every six months instead of three months. Call me suspicious but I did not like the idea. Settled on every four to five months. Still on Zoladex 10.8mg every 12 weeks. Side effects same, but nothing too bad. Still taking Calcium supplements.

Making time for me and my wife. Have fun and enjoy yourselves.


UPDATED
July 2011





June 2011 Another PSA check and another appointment with the oncologist. PSA still steady at 0.3!! Oncologist happy with result. Me very happy!! Long may it continue.

Must give others hope that everything is not doom and gloom after diagnosis. Sure, PC won't go away, but it does not necessarely stop you from living a normal happy life for a fairly long time.

I keep mentioning oncologist but actually have only seen him twice. He seems to have an always changing group of (international) "workstudents" as I see a different docter every time I go for my appointment. I am sure they discuss different patients before they see them, but it still gives me a slightly uncomfortable feeling. To be fair, when I insist on seeing the "big man", I can.

Will post again when there is any news. Be happy!!.

       
01.10.2011 0.30 01.10.11
October 2011

Another PSA check. Steady at 0.3
Feeling generally fit and happy.
       
02.02.2012 0.30 01.10.11
PSA in October 2011 still stable at 0.3 Went back in February 2012 and PSA had risen a fraction, now 0.4. Oncologist not worried and me neither. Apparently time to start worrying is when PSA starts doubling or reaches double figures according to oncologist.

Have been on Zoladex now "non stop" since December 2008. Apart from the "usual" side effects, it is increasingly affecting my ability to concentrate and is also playing havoc with my (short-term) memory. Read somewhere that hormone (oestrogen) patches, like the ones that are used by women in the menopause, might help with the memory problems. Oncologist not convinced.

Discussed a Zoladex holiday, but as it is still working, I am of the opinion:"Do not fix what isn't broken". So for now I will continue with Zoladex and long may it last!