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
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 losing 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.
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!!
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.
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 preventive medication before the condition manifests itself.] Other than that, everything still the same. Determined to go for a "Yana Gold Medal".
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. [And congratulations to Henk on hitting Gold Status - in his tenth year since diagnosis.]
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.
Became "Gold" member. 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!!
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 somwhere 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!
Had another PSA test in June. Although different lab this time, result still 0.46 so no change really. Now that I am retired from the military, I am under the care of my local GP. Have decided with him that I should continue with my Zoladex injections every 12 weeks and also still have a PSA test every 4-6 months. As long as the PSA does not rise dramatically, I will not go back to the oncologist. Only if PSA rises rapidly, or I get unexpected symptoms will I get back in touch with oncologist. He agrees. Saves me a lot of bother with going to the hospital and trying to find parking places etc. So all in all everybody happy.
Now that I have retired from the Air force, I found that I could do with a little extra money. (Pension is in euros and exchange rate with GBP not exactly favourable). Also, I was not ready to sit on my backside and do nothing (tends to drive my wife potty). So found part-time job with the local council. Once again, everybody happy.
So there you go...... >10 years ago they frightened me by saying that: "I would not get as old as I thought" after discovering (after the total prostatectomy) that the PC had already spread. And three years ago, after PSA started rising rapidly and bone metatasis were discoverd and was prescribed "Zoladex", they said that "on average" Zoladex was effective for about 2 years. I am still here; I am still working; I am still enjoying my life and I try to have a holiday twice a year.
So, whoever reads this, do not despair. Averages are just that. With a positive attitude and lust for life, you could go on for ever!!
PSA checked again in October. Now 0.86, not exactly doubled but an indication that ADT started to stop working. Oncologist suggested to add Casodex to the Zoladex in the next few months. Will wait till my move back to Holland is behind me and I have had a word with my new GP and new oncologist. I will let you know what they suggest after I have seen them.
We have moved back to The Netherlands in November. I was referred to the urologist and saw her on Dec 10th. My PSA has now risen to 1.0; not an enormous value compared to some of you, but still an increase which indicates that I am getting ADT resistant. No great surprise, (slowly) rising PSA levels whilst in the UK already pointed towards this and let's face it, over 4 years successfully on Zoladex is not bad going.
The urologist still hesitant to add Casodex. She would rather use it at a later stage. Somehow this makes sense to me.
When I enquired if there were any other options once ADT resistant, she answered no unless you count chemo . Kind of knew that too. So for now it is a matter of continuing with the Zoladex, checking the PSA every 3 months, maybe another bone scan in the new year and staying optimistic. So far it has done me no harm.
No bone pain yet, just the usual Zoladex side effects. Some of them awkward, some of them (slightly) annoying, but small price to pay to prolong life.
I'll keep you posted.
Had telephone consult with urologist. PSA had gone up from 1.4 in March to 1.6 in June. Not much of a rise really, so urologist and me fairly happy. Still on Zoladex 10.8mg every 12 weeks. GP now happy for me to inject zoladex myself. Apart from the usual side effects from ADT (see previous entries) nothing new to report. So all in all, I am happy and I feel good. Long may it continue.
P.s. Terry, I no longer live in the UK. Maybe you can find a little Dutch flag for me? [We did.]
Had another PSA check. Now 1.9, so slow increase. Must mean that Zoladex is still (more or less) effective. Urologist (and I) are hoping that the PSA rises in the future will maintain this slow rate. Who knows, I might live till a ripe old age. I still live like any other person, no special diet, no drinking gallons of fruit juice or anything like that.
Had an appointment with urologist on Jan 10 2014. PSA almost doubled in last 4 months. (from 1.9 to 3.6). This is what we did not want to happen.
I was warned, when I still lived in the UK, that as soon as the PSA values started doubling every 3 months, the Zoladex was losing its effectiveness. Apparently this is what is now happening.
I was advised to stay on Zoladex for the (limited) effect it might still have and I have agreed to this. As far as further treatment is concerned, the only option I was given (and was expecting) was chemo therapy which I declined. My personal opinion is that I would rather live for another year with the help of painkillers if needed, than for a year and a half, feeling sick with the side-effects of the chemo. It is a personal choice.
I still feel perfectly well and go about life like anyone else would, with no pain or adverse effects yet.
Watch this space, I might just surprise the medical world with what is possible with a positive attitude.
Will keep you posted with developments as they occur.
I have seen urologist again this month. PSA now 4.4. We discussed adding Casodex into the mix, but urologist would rather wait until PSA is higher or rises faster.
We also discussed the treatment with Radium 223 chloride in the future. This treatment is still fairly new in The Netherlands and will probably be available in my local hospital by the end of the year. Urologist thinks that I am a suitable candidate, but not just yet. Matters have to deteriorate first. I am still trying to get more info on this treatment, but am seriously considering it when the time comes.
I saw my urologist this month (Dec 2014) and PSA has risen drastically again, now 9.6. Casodex has now been added to the Zoladex. I will find out if this has any effect in March.
We talked about Abiraterone but apparently hospital policy does not allow the use of Abiraterone unless chemo has been tried first. (must be something to do with the costs). As I refused chemo, it appears that Abiraterone is not for me, at least not in my local hospital.
I will pin my hope of life extention on Radium-chloride treatment when the time is ripe.
I'll let you know how things are in March.
Happy New Year!
Have seen the urologist today, 3 months after Casodex was added to Zoladex. Against all my expectations it worked. PSA now down to 3 from 10! Long may it last.
We have also spoken about the next step, when the present combination of Zoladex plus Casodex stops being effective. In the past chemo (Docetaxel plus Prednisone) had been suggested. I was (for personal reasons) not prepared to have chemo, but I was told that skipping chemo would prevent me from being eligible for Abiraterone.
This is no longer the case. If the current combination of medication stops working, I can start on Abiraterone without first having to endure chemo. I am very happy about this.
Next visit in June. I will keep you posted.
After having daily Casodex added to the 3 monthly Zoladex, the results are fantastic.
PSA dropped to 1.8!!
If PSA drops below 1 at my next visit in 3 months time, the urologist wants me to stop the Casodex so that my body does not get used to it and the next dose, when required, will have a similar impact.
Lets hope for the best. So far I am happy with the way things are progressing.
I have no bad side effects from the present medication and can live my live like any other man of my age.
I hope that my story can help some other PC sufferers. As you can see, it is not all doom and gloom. You can survive for a long time without any serious (side) effects.
PSA is on the rise again. It seems that the effect of adding Casodex to the Zoladex has worn off. I was advised to continue with both for the time being so I will.
Once again, chemo was brought up as the next step and again I declined. Let's see if they are as good as their word and deviate from protocol and allow me Abiraterone.
Still feeling perfectly ok.
Will keep you posted.
Sorry I'm late with this. I saw the urologist in Feb and it came as no surprise that the PSA had gone up again. However, it rose not as fast as before. So we decided to to nothing else for the moment.
If it starts to rise more rapidly, the first we will try is an increase in the Casodex dosage.
If that doesn't work, and having declined chemo, we will give Abiraterol or Radium223 a go.
PSA has gone up again. From 2.6 to 3.6 in 4 months. Could be worse. Have declined chemo again. Will continue to take the medication (Zoladex and Casodex). So far no serious side effects. Feeling well. Long may it continue.
Have seen the urologist again and PSA has risen from 3.6 to 4.2. The increase was expected, but it is not too bad. As long as it does not double every 3 months I am not too worried.
I also mentioned that I sometimes passed blood. That was something she did not like, so I was back 4 days later so that she could have a look around in my bladder. Surprisingly, in the area where my prostate used to be, there is now a small growth inside my bladder. According to the urologist, this is a re-growth of prostate tissue and no doubt cancerous. However, as it is in the area where they operated and where I had radiation, she is afraid that the healing process after removing it might be compromised. I.a.w. chances are that the cure would be worse than the ailment. So it was decided to do nothing about it for the time being but to keep a close eye on it.
So, all in all, keep taking the medication and don't forget to breathe!
Long may it last!
Seen the urologist again for my 3 monthly check. PSA up from 4.8 to 6.0.
Increase was to be expected, but within the expected range.
Nevertheless Casodex (Bicalutamide) dosage increased from 50mg/day to 100 mg/day.
So far no physical problems.
Have asked what the particular problems were with removing the growth inside my bladder.
Apparently it might leave me with a hole in my bladder, so for the time being we will stay put.
Have experienced (sometimes) extreme urge to pass urine. Only severe concentration stops it from happening (most times). According to urologist this is due to growth in my bladder. As it is suspected to be (cancerous) prostate tissue, she prescribed Tamsuloscine HSI, a prostate relaxant. I will let you know if it helps.
Updates in another 3 months.
On May 22 I saw my urologist again. PSA has risen from 6.0 to 6.8 in 4 months. Its not too bad an increase (yet). She had also tested me on testosterone which was 0.
The Tamsuloscine HSI that I was prescribed actually works reasonably well. I still get the occasional urge to pass water, but it (the urge) is a lot less now.
No "news" on the growth in my bladder. It does not yet give me too much discomfort.
So all in all I am not displeased with the "progress".
There was one thing that bothered me though. When I was waiting at the urology department for my appointment, I read an article that claims that there is a correlation between (long term) use of ADT (Zoladex, Casodex, etc.) and the early onset of dementia.
I did some research on-line and guess what? Out of nearly 10.000 persons that were investigated (of which nearly 2000 were on ADT), it transpired that the ones on ADT were more than twice as likely to develop dementia. For more info see links below:
The reason that it bothered me is that I have been on ADT for nearly 9 years now and my wife has been telling me for more than a year that my memory (especially short-term memory) has deteriorated significantly. So much so that I started to notice it myself. I contributed it to side effects of the medication and I was right, but not in the way that I thought. I am worried that it might very well be the beginning of dementia.
So what to do?
Keep taking the medication and live longer, but not notice it because you don't know any longer who you are, where you are and who the person is who is claiming to be your wife.
Stop the medication, live not as long and be fully aware of it.
Something to think about. I certainly will.
If anyone has similar experiences, please let me know.
As always,........don't let the beast get you down.
I saw the urologist last months and no surprises the PSA has increased again. It is 8 now. I am not surprised but do not like the progressive increase in the 3-monthly value.
Also, she wanted another look at the tumor growing in my bladder. It turns out it is starting to obstruct the exit of the bladder. I.o.w. I will get more and more problems relieving myself. So we decided that it would have to be removed.
Risks involved with this are: bladder infection (easily treatable), bleeding (also treatable) and long term incontinence. It is the last risk that bothers me.
I will have the procedure sometime in November and will keep you updated.
On November 10 I had my surgery to remove some of the tumor that was growing inside my bladder.
After a period of peeing blood (only occasionally now), a burning sensation when peeing (all gone now) and a small period of incontinence (thank God it was only temporarily) all is well now with my waterworks.
I saw the urologist last week to get the post-op results. No surprise the pathologist defined the tissue as prostate cancer tissue. Also not a surprise but still something to worry about is that he gave it a combined Gleason score of 10. Apparently it was rather abnormal and aggressive.
I had hoped that my PSA would have dropped after the operation and it had, but not by much. From 8 to 7.6.
In January I shall see the urologist again and talk about what is next, but she already hinted that there is not much more that she can do apart from continuing as we are.
In the mean time I feel fine and have no pain. Long may it continue!
I will update again in January.
I saw the urologist this week. The removal of (part of) the tumor in my bladder did nothing for my PSA. It had gone up to 9.8. It is not what I had hoped (against all hope) for, but then again it is just a number. I still feel remarkably well.
We (the urologist and I) had a short discussion on what treatment there was left, taking into account that I have refused chemotherapy. The short answer is no other treatment, so I will continue with zoladex and casodex and see how far it gets me. Up till now it got me quite far.
The only other treatment possible is radium 223 to help with (the pain of) bone metastasis. She is of the opinion that it should be used when I start to experience bone pain. I on the other hand think that it might be beneficial to start earlier. Kill it (the metastatis) in its early stage before it gets painfull. Apparently there is no data on this yet. If any of my followers has any info please contact me.
As always, stay cheerful and upbeat for that is half the battle won.
Henk's e-mail address is: henkinenschede AT ziggo.nl (replace "AT" with "@")