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User
Posted 20 May 2017 at 11:51

I just realize my last post has disappeared or maybe I did something wrong.

I was asking for some information.

OH had Da Vinci 25 days ago and catheter removed 12 days ago. He soon stopped bleeding when going to the loo. Now he bleeds again a little bit when starting and finishing his pee. Is it normal or we should tell the consultant?

Thanks in advance.

Best wishes,

Lola

User
Posted 20 May 2017 at 13:02

This is tough for someone to answer as you have to use your own judgement Lola. Many people including myself had episodes of bleeding post surgery. One day I did a massive blood wee but had overstretched my bladder. There are wounds healing and scabs moving so some bleeding is inevitable. Just monitor it but heavy bleeding needs A&E

If life gives you lemons , then make lemonade

User
Posted 23 May 2017 at 22:34

Hope its getting better Lola

Scary times I know

Clare

User
Posted 13 Jun 2017 at 13:16

Hi there.
I have a question. I'd appreciate it if someone could give me some information.

After seven weeks from RP my hub's PSA is 0'04. Is it ok or it should be undetectable,?

Best wishes,

Lola

User
Posted 13 Jun 2017 at 13:48

Hi Lola,
the guidance here in the UK is that it should be less than 0.1 so it's looking pretty good. What did your consultant say? Is he still happy with the way everything went and the pathology report after the operation.
My OH results were 0.01 at 6 weeks and 0.004 at 16 weeks down from a starting point of 3.0

PSA has quite a long half life so it can take some time to completely clear the system and your next result may still come down further. As Lyn always comments the tests at these very low levels are also not always as accurate as we might hope and so a result of 0.04 at one hospital could actually be the same as 0.01 at another.

Be happy, enjoy the summer and get another test done in 3 months that will hopefully be the same or less than this one.

All the best Julie

User
Posted 13 Jun 2017 at 13:57

Thanks, Julie. You are helpful and nice, as usual.

We are seeing the consultant on the next week but we have got the results this morning. We are taking them to Madrid for the appointment. Paco had his blood test in our city.

Hope you are doing wel, GREAT WIFE.

Love,

Lola.

User
Posted 13 Jun 2017 at 14:18

Sounding just Rosy to me at 0.04. The stuff that dreams are made of. And a happy , care-free long hot summer ahead. Just enjoy

If life gives you lemons , then make lemonade

User
Posted 13 Jun 2017 at 14:22

Thanks, Chris. Hope you're doing better.

Best wishes

Lola

User
Posted 21 Jun 2017 at 09:58

Just updating OH latest news.

We saw the uro yesterday.
He said everything is OK as PSA level is 0,04.

Full continent.

Next control by November.

He recommended Cialis 5mg. One pil a day.

When going to have sex, 20mg.

Wish all the best to all of you. May you enjoy summer. We all deserve it.

I'm grateful to this site and people on here that have made our journey easier.
Lola

User
Posted 21 Jun 2017 at 10:23

Glad the results were so positive Lola.

Time to appreciate the here and now and not worry too much about what might or might not happen in the future.

Enjoy your time together

We can't control the winds - but we can adjust our sails
User
Posted 22 Jun 2017 at 10:54

Great news Lola. A happy consultant is a very good thing. Have a great summer.

User
Posted 22 Jun 2017 at 19:16
Hi Lola,

Just the news you wanted.

Have a celebration drink.

Take care.

Steve

User
Posted 08 Dec 2017 at 17:03

Hi there:

Just came on to the site to congratulate Chris on his journey. So happy to hear such good news.

And by the way, I'd like to share something: My OH PSA test six weeks after RP was 0.04. Nowadays, few days before next visit to uro, it has come up to 0.05. Do you think it's something to be concerned o scared about?
You knou you can't help your mind going round and round.

Best wishes to all of you,

Lola.

User
Posted 08 Dec 2017 at 21:55
Lola

That rise is so small I would,put it to the back of your mind and forget it.

Thanks Chris

User
Posted 08 Dec 2017 at 22:53

Thanks. You have brought me some calm to face the night.

I really appreciate your words.
xx
Lola.

User
Posted 08 Dec 2017 at 23:14

Lola , this cancer is so worrying always. It’s nasty in that it can be so long without cure. The results you are showing at the moment should be neglected in reality. In honesty most hospitals won’t offer RT until 0.2 is reached or if 3 rises are amseen in a row!! And here I am at PSA12 and my Onco isn’t wanting to nuke me nor castrate me , and I still feel safe in his hands ....
Get through xmas ——its mostly a slow growing disease and I aint worrying !

If life gives you lemons , then make lemonade

User
Posted 08 Dec 2017 at 23:27

Thanks for answering, Chris. Really appreciate it.

And remember: when I say I'm glad to hear of your good news, it's a real feeling that comes from deep inside me. I have always been following your journey. And at the same time, thankful for your help and support.
I wish you the happiest Xmast.

Lola.

User
Posted 09 Dec 2017 at 23:34
Hi Lola,

Hope you can take the great advice you had here and enjoy the Christmas period. Easy to say I know but really meant - here is wishing you peace

Clare

User
Posted 10 Dec 2017 at 00:15
Feliz Navidad, Lola. One of the very few Spanish phrases I know.

Ulsterman

User
Posted 26 Dec 2017 at 10:10

HI there.

First of all: Merry Xmas.

My best wishes to all of you - of us- fighting PC or worried about it, awaiting for results, suffering, trying to get some relief, concerned about it in general.

In Spain we say "el miedo es libre" -fear is free-. Sometimes we can't help feeling fear stil if this f**** desease doesn't seem to be getting worse.

May next year bring good news and comfort to our souls.

Tomorrow the uro is seing OH for the second time after surgery, seven months ago. His PSA has risen from 0.04 to 0.05, but I'm trying hard not to give much relevance to this fact and enjoy Xmas with my family. We'll see what the uro says about it.

Your help, since the moment this journey started and panic took over me, has been amazing. That's why now, about to see the doctor again, I want to say THANKS for having teached me to manage fear, to get some knowledge on this topic, to share a part of my live with you, because we are in the same boat.

Big hugs xxx

Lola.

User
Posted 26 Dec 2017 at 12:24
Hi Lola

Hope you are enjoying your Christmas and hopefully the New Year will start off with some good news for you. The PSA readings are under 0.1 so basically undetectable and let's hope it continues that way.

Wishing you and your family a very happy New Year.

Kevan

Life doesn't have to be perfect to be wonderful 

User
Posted 26 Dec 2017 at 12:49
Big hugs to you Lola, xxx
User
Posted 27 Dec 2017 at 13:01

Hi there
Just want to share it with you: OH has just seen the uro in Madrid. He wasn't concerned about PSA rising from 0.04 to 0.05.

Six months from now new blood test and, in this occasion , CAT will also be done.
I wish you all there best, from the bottom of my heart xxx

Lola

User
Posted 27 Dec 2017 at 13:13

It's good news Lola that the Consultant isn't concerned.

Time to relax, see in a New year with hope in your heart.

Best Wishes to you and yours X

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Dec 2017 at 16:36

Hi there,

The urologist has recommended 9H an ointment for ED. The commercial name in Spain is Viridec. Alprostadilo is the active ingredient. Can someone provide information or experience? It's absolutely new to me.

User
Posted 27 Dec 2017 at 16:41

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4977016/
A link to the product.
It's said to work at 83%
I don't know. Just recommended two hours before.

User
Posted 04 Jan 2018 at 05:57

Hi friends,

I have a question: my hub, DP Da Vinci last May, has just had seven months test after surgery. everything was ok but last night, he suddenly found blood in his urine and some discomforo at his postate bed. He says that yesterday, due to circumstances, he had had to contain his urine for a while as there was no possibility of going to a bathroom, but anyway, it seems scary to me.
On the other hand, just today he is suppossed to have a colonoscopy done. We don't know what to do about it. What could that bleeding be due to? Is it ok still having the colonoscopy? Going to emergency service first? Taking the antibiotic his consiltant gave him in case he had some discomfort or temperature?
The doctor who operated him doesn't belong to the SERGAS (National Health Care) and in aditionto this, his hospital is in Madrid; so, starting again in SERGAS? No, my God!

The day is about to start and we are confused and concerned, can someone here tell us something? I woul'd really appreciate it.

Thanks in advance.

User
Posted 04 Jan 2018 at 08:44

Hi Lola, Viridec is called Vitaros in the UK and there are quite a few posts about it on here - some people find it effective.

Can't help with the blood in the urine thing except that he might have a bit of an infection. In the UK that would definitely not be an emergency hospital thing but perhaps just mention it to the specialist doing the colonoscopy. Fortunately the bladder and the bowel are not connected so hopefully it won't stop the appointment from going ahead.

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

User
Posted 04 Jan 2018 at 09:03

As usual , Lyn, you have been extremely helpful. Thanks.

That's just what we were about to decide. Now, there's no doubt.

We'll mention it to the doctor before he starts with the colonoscopy and, also, he'll take the antibiotics the uro had given to him in case he felt some discomfort. He has bacteria but not so many .The uro said it's OK as far as he doesn't feel poorly or has temperature,
Thanks again, Lyn!! Xx
Lola

User
Posted 08 Jun 2018 at 07:36
HI all.

For all theese months since I first joined this friendly site,I've been quietly following your comments on your travel, your fears, your joys, etc.

Now I'm her again to tell you abour oh's last news. I'm really scared. As I wrote above, my husband's psa a few weeks after RP was 0.04. Six months later it was 0.05. The uro wasn't concerned about it, but yesterday we got the results of his last PSA,one year after surgery. It has risen to 0.08 and still being below 0.1, the fact that is has been increasing is scary.

Appointment with uro will be on June 27 and I know I must wait to hear his comments, but your opinions would be really appreciated.

I would like Paco to have the blood test again, but on the one hand I'm sure he''l refuse, and on the other hand I'm afraid the laboratory machine is ok and the result would be the same.

Thanks for reading.

Lola.

User
Posted 08 Jun 2018 at 10:06
Ah I can empathise with your worries! I think you should get that retest before your appointment.

Unfortunately you are probably in a grey area regarding salvage treatment, this is because the current guidelines talk about recurrence at 0.2 but there is a body of evidence that supports earlier intervention as soon as there is a clear rising trend, my onco said they wouldn't do anything until it got to 0.1 fortunately my last test went down.

So I would at least get a second opinion from an oncologist and research salvage radio therapy on this site and others so you can make an informed choice about what to do next.

User
Posted 08 Jun 2018 at 10:13
Thresholds for intervention may be different in Spain though.

Lola, no point arranging a second PSA test. Even if it was slightly lower you would still worry that the new test was wrong and the 0.08 was correct.

His body may just be settling back into what is a normal level of PSA for him. Women that are breastfeeding could have a PSA of 0.08! Wait to see what the specialist says, and also what the normal point is for salvage treatment in Spain.

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

User
Posted 08 Jun 2018 at 10:40
Posted 08 Jun 2018 at 10:16

 

Thanks for your response.

 

Do you mean your psa rised and then came down again? Do you think there's any chance my husband's psa goes the same way as yours and becomes lower than it is being currently, by itself?

 

Wel, I'm going to try to convince him to retest his PSA before his appointment.

 

Many thanks for your piece od advice.

Lola.

User
Posted 08 Jun 2018 at 11:47
Oh, Lyn, by accident I have deleted the post I had written to you. I was trying to delete another one that, again accidentally , was duplicated.

First I was saying thank you from my heart. Yo're allways there to help and support worried people.

You may be right. It's no good to have a blood retest. Apart from being so highly knowledged on this subject, you seem to be aware of my frequent anxiety and fears, and yes, I would possibly continue to be suspiccious about the new test fiability.

You said that PSA might be fluctuating until the body settles and get to the real PSA? Do you mean it could go down again?

The hospital's my oh is being treated criteria is that no treatment will be done as far as PSA is under 0.04, but I'm afraid most hospitals' critera is 0.02.

So, if I have understanood your words the right way, isn't it all that bad? I hope yes.

Luckily, now I'm capable of keeping my concern to myself and not let Paco know about it. I remenber you often used to advise me so. I'm behaving properly. Thanks also for your warning me on that.

Best wishes xx

Lola.

User
Posted 08 Jun 2018 at 11:57

I saw the first post so don't worry. And it is good that you are trying to behave!!! You have typed the numbers wrong here though - you meant 0.4 and 0.2.

If your hospital does not trigger salvage treatment until it gets to 0.4 then that is the way it is - no point you worrying that in England the NHS says 0.2 ... maybe the machines doing the testing are slightly different, or maybe the people who pay for treatment (is it private health insurance companies in Spain?) won't pay until it gets to 0.4. And yes, it can fluctuate a little so Franci's PSA went up a bit and then down a bit and my husband's has gone up to 0.11 and then back down to 0.09 and seems to just hover between the two at each test.

I don't think 0.2 or 0.4 would make much difference to the outcome - my dad is now up to 0.7 and his urologist is fine with him not wanting to have radiotherapy or hormones yet.

Edited by member 08 Jun 2018 at 12:27  | Reason: Not specified

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

User
Posted 08 Jun 2018 at 12:05

https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-laughing.gifI'm so glad to know that your men are doing well!

User
Posted 08 Jun 2018 at 16:38

Lynn

I believe the 0.2 threshold for BCR post RP s an international standard.

The study you can down load from here:

https://www.europeanurology.com/article/S0302-2838(17)30655-3/fulltext

Discusses the optimum (inc never) time and application of SRT to various post RP prostate cancer risk factors.

Other studies I have read seem to be saying the same thing - very low risk post RP (ie undetectable PSA with supersensitive test, PT3A or less and Gleason 7 or less) can chance it and wait for SRT, medium risk should get it done straight away and very high risk probably have no benefit.

 

User
Posted 08 Jun 2018 at 19:51
Rather irrelevant though since the threshold at Lola's OH's hospital is 0.4. It doesn't really matter what the threshold is for determining biochemical recurrence; it is the threshold at which a specialist, hospital or insurer would agree to start salvage treatment that can be variable.

The two thresholds are not necessarily the same. Take a man who has had radical RT / HT. The threshold for biochemical recurrence is 2.0 but based on the experiences of members here, the point at which an onco will restart treatment is usually 5 or 10 (or in Bri's case, the onco says 20 is the threshold and in another example on here this week, either 20 or 50)

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

User
Posted 08 Jun 2018 at 21:59

Irrelevant?? Lola may chose to go somewhere else or seek a different consultant if armed with knowledge she decides her current treatment options are not optimal. . BTW I am not saying they are! But isnt wider knowledge, experience and mutual assistance not the primary functions of this site??

User
Posted 09 Jun 2018 at 06:24

Thanks Francij1 and Lyn for your comments and help.

I've been reading the stuff from the link you posted, Feancij1, and yes, it seems to be 0.2. Also it is in most hospitals in Spain, and I think at our National Health Care aswell, I'm not sure. Actually I have asked myself why our uro insists on this criteria". Shall I think there is some reason for this? I hope they are doing correctly at this hospital (also an important hospital in Madrid), but on the other hand, something Lyn said (is it private health insurance companies in Spain?), makes me be suspicious. I mean, is this attitude a way to save money? We belong, apart from the National Health Care,as every Spaniard, to a pretty well known and reliable insurance company and, on this occasion, we are using it. (We only had to pay for the DaVinci), and now I'm afraid Lyn could be right. In case we came to that bad situation (cross fingers), I'm now taking account of that.

More opinions from you and from other members would be appreciated.

 

Best wishes,

Lola.

Edited by member 09 Jun 2018 at 06:26  | Reason: Not specified

User
Posted 09 Jun 2018 at 13:26

Hello Lola,

I realise I’ve had different treatment to you husband but my last four PSA results are - 0.01, 0.04, 0.08 and 0.18

My oncologist doesn’t seem too concerned and thinks it might even out, she said that unless it reached 2.0 they wouldn’t take any further action on my behalf.

Just to keep any eye on things she wants to see me in 4 months instead of the 6 monthly appointments I’ve been having.

Best wishes,

Arthur

Edited by member 09 Jun 2018 at 18:21  | Reason: Not specified

User
Posted 09 Jun 2018 at 18:51
Thanks for your response, Arthur. It helps me keep calm at the time I'm getting more information on this subject.

I'm glad to see you're doing well.

Best wishes,

Lola.

User
Posted 25 Jun 2018 at 06:50

HI all:

Two days from now, wednesday, my hub will meet his uro.

We've just got the result of his abdominal CAT he had done here, where we live. Taking it to Madrid tomorrow,  for the doctor to see. It seems to be clear... prostate bed, liver, pancreas, bones, etc. But my concen continues to be his PSA rising from 0.04 to 0.08 during this year. He had Da Vinci one year ago.

I  am scared. I'm imagining sitting at the uro's desk, facing him and listening to what he says.

I have a doubt, what is considered as "undetectable PSA"? 

I'm not sure  this blood test machine is "ultrasensitive" or a simple one. I'm a bit confused about it.

Comments would be appreciated.

Best wishes,

Lola.

User
Posted 25 Jun 2018 at 07:59
Ultrasensitive PSA test is anything that mesures below 0.1 so your figures are Ultrasensitive.

Pre Ultrasensitive less than 0.1 was considered undetectable simply because you could not detect PSA below this level. Many people still consider less than 0.1 as undetectable.

 
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