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User

Posted 29 Oct 2014 at 22:21

I had a robotic prostatectomy on 30th August 2014. the cancer was contained and there was no spread to my bones or lymph nodes. How astonished was I to learn during my 8 week post op appointment this week, that instead of having a zero PSA which is what usually apparently happens, it was 1.9. I have looked in vain for posts relating to others that have experienced this and can't believe I am the only one. My consultant was at pains to reassure me by explaining it may be: that I'm a slow decliner or maybe there are cancerous cells left behind in which case they will just "zap them". Frankly, I' m worried. I'm having another PSA blood test next week and another appointment the following week. Any comments please?

User

Posted 30 Oct 2014 at 06:55

Hi sorry you confused me at first as there was someone else on here with the name country boy.

What was your pre op PSA. What did the histology say about the prostate.
You can request a copy of your pathology report.

To be honest 1.9 is rather high post op. Personally I don't think it's because you are a slow decliner but that is just my opinion and I'm not medically trained.

I would wait to see what the next blood test is. There are men on here who have been in similar situations who I am sure will comment.

If it hasn't gone down at your next appt it may be worth discussing HT to suppress it until you can have some salvage RT again just my opinion.

There are scans available that could potentially pin point where the PCA is (if this is what it is). Look at Roy L's profile

Try not to panic.See what happens at your next appt and keep posting on here

Bri

User

Posted 30 Oct 2014 at 09:14

Hi Jim,
I don't remember anyone with a ZERO after surgery, saying that I know that mine rose after surgery, and again after RT, and yet again after Chemo, see my profile, so a rise isn't unknown, but as Brian says, wait until your next PSA and ask WHY if it is still more than 1.0 .

Chris.

PS. Try to ensure that all your blood test are taken and assessed in the same place as different machines can give different readings.

User

Posted 30 Oct 2014 at 09:19

PPS, Yes Brian there are actually 4 different Country Boy listings as members.

Chris.

User

Posted 30 Oct 2014 at 10:11

Frankly Countryboy I am a little shocked that you have not been put on a HT/RT path immediately. This is called adjuvant treatment and is used where it looks likely that the surgery didn't get it all out. Medical norm is that you should have a PSA of less than 0.2 post-op so you are quite a way from that. The fact that you are seeing the consultant again so soon indicates that he is treating this seriously so wait and see what he says then.

In the meantime, you should be able to get lots of info about other members here who have been in the same boat - use 'adjuvant' and 'recurrence' in the search box, or read some of the threads on RT. You could also search 'salvage' although this is slightly different as it is used to describe treatment that is needed when the PSA rises again a while after the treatment.

When surgeons have to report their successful ness, one of the criteria is the % of men who need adjuvant treatment so my guess is that your consultant will be hoping like mad that your PSA is lower than 0.2 next week.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Oct 2014 at 10:12

Having said all that, we don't know whether you have any other medical conditions that might affect your PSA which could be why the consultant wanted to retest.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Oct 2014 at 10:16

Hi Jim

You state that there was no spread and the Cancer was contained, was this proven by the pathology of the removed organs or was it your initial diagnosis which relied upon the scans you had at the start. Was nerve sparing carried out or were they removed. After my RP my PSA came back at 0.42 rising to 1.6 after 6 months so I was advised to have a PET/CT scan which is able to pinpoint spread at low PSA levels, so if your PSA does not reduce then I would enquire whether you could be referred so that you know where the spread is and not be treated on assumptions. If you click on my name you will see my profile and look back at my posts regarding my journey. If you have any specific questions please ask away.

Al the best

Roy

User

Posted 30 Oct 2014 at 23:16

Hello, and thanks to you all for replying. It's really reassuring and I appreciate all your constructive comments.

I had a PSA of 14.5in March rising to 16.? pre-op and had a T2 grade 4 lesion Bri.
Chris, when I mentioned expectation of zero PSA post op, I meant close to zero or at least in line with the <1 norm.
I have no Idea why adjuvant treatment wasn't offered Lyn, the consultant did say, as mentioned above, that if the reading is accurate and is still at a high level he will find the problem and fix it. I should have requested a blood test then and there which would have saved a week, but I was a bit dazed from the news and wasn't at my mental best then. I have no other conditions which would affect the reading that I am aware of.
The pathology report showed that the problem was in fact contained within the gland. he reported that he had spared all the nerves on one side and half on the other side which I was pleased about (still got severe ED, not a twitch yet). I've not had time yet Roy to view your profile but will do so tomorrow. Thanks for the invite.
Finally, further to your comment Chris, I have added an avatar to hopefully avoid any confusion.
So, I'll just have to wait (again) for the further results and see where we go from there.
Thanks again,
Jim

User

Posted 31 Oct 2014 at 00:56

Hi Jim, I think you meant <0.1 rather than <1 - might seem pedantic but there is a massive difference unfortunately :-(

Good luck next week

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 31 Oct 2014 at 18:33

Hi Jim,

It would make the best sense to follow Roy's example and ask for the PET/CT tracer scan if at all available. Even if it means you travelling to another hospital for it. You may be offered an MRI but after the surgery this might not show the problem clearly enough , nor where it is if there should there be a problem.

It is possible that some tissue has been left behind, benign or otherwise. But to see a psa of that figure post surgery is certainly of concern. Are you certain the words - positive margin are not used in the report ?

I think your consultant wants to know if psa is rising, stationary, or dropping. That needs a couple of weeks or so monitoring time, so don't fret over that.

I'd suggest you don't want to start any HT before such scans. The scans could well help target any problem area in accuracy. So push for the best available.

All this is of course assuming the psa doesn't drop to be below the 0.1 level.

Edited by member 31 Oct 2014 at 18:33 | Reason: Not specified

User

Posted 24 Nov 2014 at 17:05

Just an update: PSA has now risen to 2.1 so have been for a pet/ct scan at St Thomas's. As the appointment came through quickly, I rang Guys and asked for an earlier appointment which I was surprised to get. It will be very interesting to hear the result. I imagine, given the consultants comment on zapping last time, that I will probably need RT. As always, it's the waiting that gets you. Still, not too long until tomorrow week. I will post the results.

For anyone else being treated at Guys, I have just heard on the news this morning that London Bridge rail station will be closed for 16 days over Christmas and the ongoing building works will mean disruption for ages. Happy days :-)

Jim

Edited by member 24 Nov 2014 at 17:07 | Reason: Not specified

User

Posted 09 Dec 2014 at 14:33

I really don't know what to think now.

Post RPA my PSA has gone from 1 .9 to 2 .1 and now the latest is..... It's gone down to 1.5. It has my consultant stumped. He has referred me to a colleague of his and I am to have another PSA before seeing him. My pet scan revealed little and my consultant said there was a shadow around the pelvic area.

I haven't found any posts of men who have had similar. Any ideas?

Jim

User

Posted 09 Dec 2014 at 14:55

There's at least the theory that post RP , P.Ca. cells are floating around the system. i.e. not all are ever scooped out by the surgery. But the immune system deals with these cells ( or some of them ) which haven't had the chance to form tumours.These cells are considered vulnerable to the immune system action as they have been suddenly taken from their original growing area ( the prostate ) & are a bit lost where to grow.

That's the gist of what I understand.

The telling part is of course your future psa figures.

User

Posted 10 Dec 2014 at 18:50

Hi Rob,
The theory you mention certainly makes sense and I hope it is the case. I questioned my surgeon as to how the cancer got out when it was apparently contained, hadn't spread to my Lymph nodes and my bone scan was negative. He agreed when I rationalised that it must have got out before my RP. My brother in law suggested I give up dairy products which I have (almost) and he is convinced the drop of PSA is due to that. I read you have tried various diets extensively so I would presume you may well agree. Also, my wife plys me with Pomegranate juice and a glass of red wine every day, we call it my medicine and I am coping very well with it :-)
Your dietary journey reminded me of Mahatma Gandhi who, in his excellent autobiography, followed a not unsimilar path.
Thanks for taking an interest and replying.
Jim

User

Posted 11 Dec 2014 at 16:18

Jim,

The pomegranate route has in the past year been shown to have no curative or preventative effect, but if it tastes good stick to it. Ditto red wine, I'm afraid, but it will certainly make you feel better about life so go for it! If you are put on HT (=ADT) watch the calorie intake with these two as they may contribute to weight gain which can occur with the supressing of testosterone in your body. It will be important to exercise more also as the HT can induce some lethargy, thus inactivity. If you're alert to the possibility you can prevent it!

Good Luck

OC in Northants

User

Posted 11 Dec 2014 at 17:14

Hi Jim,

My diet is not that strict really. I just avoid certain foods & others as much as reasonably possible. Nothing like as strict as say the Gerson diet which would be too much for me to manage.

I'm not sure about diet changes causing a drop in psa. What I do believe is that it slows progression and spread.However, it doesn't actually kill off P.Ca. cells; just slows their ability to progress. Same with some supplements. Which can buy valuable time if you are inclined to do so.

It's becoming accepted now that the P.Ca. is never fully contained in the prostate. With surgery, P.Ca. cells float about in the general bloodstream for a while after. Very often mopped up by the immune system as those cells have suddenly been wrenched from the prostate during surgery. And are not developed enough to disguise themselves away from the immune system. The high volume of blood supply to the prostate means this travel can happen all of the time pre-treatments of course. It's only as P.Ca.cells develop that they ( usually ) creep into the lymphatic system and thus travel around more-so.

Same with R/T. Some cells will escape the effects and either move further afield in time or re-form tumours in the prostate. Odd cells are less likely to survive or cause a problem. Helping the immune system with a good diet & avoiding the bad stuff obviously makes sense.

For yourself, it is the PSA which will guide your next step if required. I hope it drops further for you.

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