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User
Posted 13 April 2017 06:52:04(UTC)

Thanks, Chris, I quite understand what you are explaining above.
I wonder why the surgeon didn't mention adjuvant RT. I can see it is likely to be neccesary. Or maybe he'll mention it at next appointemnt before surgery.

I know I must be prepared for everything.

Regards,

Lola.

User
Posted 13 April 2017 06:58:33(UTC)

Thanks, Chris.

I really appreciate your advices and answers to my frequent questions. You all are being a great support to me. I've got nobody around to talk with and I really need it.

Regards,

Lola.

User
Posted 13 April 2017 07:55:54(UTC)
Originally Posted by: Online Community Member

Thanks, Chris, I quite understand what you are explaining above.
I wonder why the surgeon didn't mention adjuvant RT. I can see it is likely to be neccesary. Or maybe he'll mention it at next appointemnt before surgery.

I know I must be prepared for everything.

Regards,

Lola.



No Lola, you are letting your imagination run wild ... based on the current information it is not likely that Paco will need adjuvant RT. Remember that when you first gave us the results of the MRI we couldn't tell whether it translated as 'evidence of minimal extraprostatic extension' or 'minimal evidence of extraprostatic extension' which mean different things.

In the UK, when the prostate is removed it is encased in a wax block by the pathologist. The wax block is then sliced very very thinly so that each thin layer of the prostate can be inspected closely. If any cancer cells are touching the wax edge it is called a positive margin because it means that there is a possibility that some cancer cells were also left inside the man. Some men who have a positive margin don't have any further problems and their PSA stays nice and low. Some men have adjuvant RT because the wax slice shows that cancer cells were definitely left behind in the man. Some men (like my husband) have positive margins but wait to see whether the PSA goes up and if it does they have salvage RT 2 or 3 or 5 or more years later.

Some hospitals in the UK send a bit of the prostate to the pathologist during the operation to help the surgeon check for margins - I think they also do this in some European hospitals. You could ask the specialist whether they do that in Spain but don't assume that Paco will need further treatment as everything you have been told so far indicates that it is a very small tumour.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 13 April 2017 09:02:48(UTC)

Lyn, as usual, your words are wise and calming to me. Thanks for reading and responding my posts. I guess you can feel my anxiety by means of Internet, really perceptive. But I'm glad Paco and I are doing well: gardening, enjoying our grand son etc. etc. I mean I don't seem to be making him overworry, I'm behaving myself ;)

Yes, the surgeon said samples would be frozen and taken into lab while in theatre.

Very interesting the stuff about the wax block, had no idea. I don't think many doctors are so knowledged as you.

As far as my first translation of MP MRI I think I can properly translate it now: the report said "there is possibility of minimal extraprostatic afectation", from what I assume there could be some small extraprostatic afectation?

Thanks again. Have a nice thursday. It's holyday here but it doesn't really make any differenceas Paco is retired.

My best wishes to you, OH and Dad.

Lola.

User
Posted 20 April 2017 05:22:07(UTC)

Well, we are already I'm Madrid. Counting down to the next Tuesday.

Everything is ready for OH prostate removal.

Appointment and talking with surgeon yesterday. I asked him why he had never mentioned RT or any other treatment after op. He said his expectations are to solve the issue just by surgery but in case the PCa was upgraded from post op biopsy, maybe low dose RT. We will see.

He also said Paco would stay all night at UCI and that two bags of blood were ready just in case. It all sounds scaring, but I understand this is the usual way the procedure goes.

Crossing fingers and trying to enjoy family here during the previous days .

Lola

User
Posted 22 April 2017 20:31:27(UTC)

Hi all.

Information about post Da Vinci surgery would be appreciated.

How long are they supposed to stay at the ICU after op?

I'm confused. Shall I stay all night in the hospital while he is at ICU ? I don't know how it goes, when I can see him in his bed etc.

As days goes by I m becoming more and more nervous.

Three days left.

Regards,

Lola

User
Posted 22 April 2017 21:03:55(UTC)
Lola

I can only give you my own experience in a UK Hospitial. I went into theatre about 0830 came round in the recovery room about 1230 had a cup of coffee and two slices of toast and was in the Urology ward by 1330.

My wife came to see at about 1800. I was tired and slept quite alot. The ward was quite noisy at night and I did not get much sleep in the night.

We keep telling you to relax, it is a major operation but most guys are home in one or two days.

My wife enjoyed a couple of good night's sleep while i was being looked after in Hospitial.

Take care and stop worrying.

Thanks Chris

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User
Posted 22 April 2017 21:17:31(UTC)

John's operation started at 4.30pm and finished around 10pm - the hospital told me to go home and come back later! He had a cup of tea about 2am before he was transferred to the ward. He was in hospital for 5 days I think, but his was open surgery not Da Vinci.

It may be another difference between the UK and Spain but over here, we wouldn't expect men to be in an ICU after RP. They are taken from the operating theatre to a recovery room where they wake up from the anaesthetic and then they go back to the ward (or their room if they have one). If someone ends up in intensive care after RP it is usually because something went very wrong :-(

I imagine the nursing staff would rather not have you there all night?

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


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User
Posted 22 April 2017 21:38:52(UTC)

It seems to be different.

The consultant said after surgery Paco would be taken onto " some kind of ICU" that they have for resuscitation" (is this word correct? It sounds awful :( )

He also said I could see him for a while and then I'd rather go home, but i wouldn't like to be absent on his coming back to his bedroom.

To be honest it results to me a bit strange him staying the whole night in that place.

I hope more information will be provided.

Thanks for your help.

Best wishes

Lola

User
Posted 22 April 2017 21:48:31(UTC)

At Southampton they have ITU wards where you go immediately post op , which is completely different to ICU altogether. Just better care for the first couple of hours and not emergency care. Fingers , toes and everything crossed for you x




If life gives you lemons , then make lemonade
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User
Posted 22 April 2017 22:00:14(UTC)

I guess it must be something like that, Chris. Some place we call «reanimación»

My sisters and my brothers in law are concerned about the operation and they are traveling to join us. And my children, of course. I'm happy I'm not going to be alone.

Thanks to the three of you for helping.

Lola

User
Posted 23 April 2017 10:17:13(UTC)

Reanimacion - the best translation i can see is recovery room. This is where everyone goes after an operation to make sure they wake up normally after the operation. There are also ITU's or HDU's high dependency units where he could be taken for a few hours after the op particularly if there has been any bleeding to make sure he is fit before going back to the ward. This is not the same as ICU intensive care.
In our case OH went down for his op at about 12:30 and was in the recovery room before 17:00. His surgeon then phoned me to let me know everything had gone well and give me the details of the surgery. He also told OH the same but he didn't remember any of it as he was still a bit sleepy.
He then came back to his room at about 19:30.
As OH was in a side room on his own i was allowed to wait there for OH to come back although I did go out in the afternoon for a few hours. He then had some food and a cup of tea and I left at about 21:30 much to OH's horror as he was still panicking quite a lot.
The next morning OH was up and and walking and left hospital about 18:00 the day after his operation.
Don't​ worry. Paco will be well looked after and remember blood in his catheter is perfectly normal if a little alarming at first.
All the best. Julie

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User
Posted 23 April 2017 10:35:46(UTC)

Julie, that's very clarifying to me. Thanks.

I was told he would stay at recovery room all night long.

Surgery will start at about 16:00. It will be finished at 20:00 or so, I reckon. Maybe they want Paco at recovery room as it will be night and in case of any problem, the ward staff is reduced during the night?

Or maybe because he's 68 or whatever...

The surgeon said I'd rather go home but I'd like to stay in the room as it is possible since we are going on private insurance , not on the "Seguridad Social". But my daughter and sisters don't want me to, so I'll go back to the hospital very early in the morning.


How is OH doing?

My regards,

Lola

User
Posted 23 April 2017 11:42:45(UTC)

Lola, wishing you and Paco all the very best for Tuesday!

Un gran abrazo y beso para ti!

Pablo

User
Posted 23 April 2017 13:53:49(UTC)

Thanks, Pablo.
Tuesday will be am important day in our lives as it was 30 years ago when his left kidney was removed because of the same issue. Cancer twice. Despite all, I don't think we are entitled to complain.

Un abrazo grande desde Madrid

Lola.

User
Posted 25 April 2017 08:57:29(UTC)

Well, now it's time to go to hospital for hub to be admitted and then taken to theatre.

Hard day


Lola

User
Posted 25 April 2017 08:59:00(UTC)

Hey Lola,
thinking of you and Paco today. Hope all goes well.
Julie

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User
Posted 25 April 2017 12:19:26(UTC)

Keep strong today Lola.. big hugs

Clare

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User
Posted 25 April 2017 12:45:54(UTC)

Be thinking of you and Paco today. All fingers and toes crossed! Tom

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User
Posted 25 April 2017 15:21:41(UTC)
Lola,

Wishing you both the Best of Luck.

Hope everthing goes ok.

Steve
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User
Posted 27 April 2017 08:17:00(UTC)

Hi all

As some of you know Paco was operated last Tuesday. The procedure was long as the lesion was larger than expected.

The surgeon came inform an said he had removed left seminal vesicle, nerve and inguinal nodes. In panic I asked whether capsule had broken. He said "no, I don't mean so. Keep calm".

Next morning, when coming to see how Paco was going I asked again about inguinal nodes: were they affected? He said of course all the stuff would be analyzed but he didn't think so, an said again we must keep peacefully.

Now he is calmly listening to the radio. He has been a little in pain during night because of CO2 inside, but he is feeling better now.

Hard evening fur us too while waiting for OH to be taken into ICU after op, in the room for family and visitors. Besides our own anxiety and concern, an old lady happened to pass away and family didn't stop crying, screaming , getting out of control, getting sick and being attended by medicals etc etc.

Thanks to all for your supporting and help.💛🌹

Love, Lola.

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User
Posted 27 April 2017 13:08:29(UTC)

Ah Lola, what a stressful time you have had.

The worst is over now. Paco will recover, maybe slowly, but he will recover.

It is sad that somebody else lost a loved one and that you had to listen to their distress, and I am sure you are grateful that you aren't in that situation.

You are doing well for your Paco and family. Be strong and continue to be brave. He is a strong man and he will be well again I'm sure.

*********

We can't control the winds - but we can adjust our sails
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User
Posted 27 April 2017 13:19:01(UTC)

As Johsan says the worst is behind you, you can now see Paco getting stronger each day. All the best. Julie

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User
Posted 27 April 2017 14:16:14(UTC)
Hi Lola
The op is now over and so Paco needs time to recover as this is major surgery but you need some time to relax as well. Paco will probably be pretty bruised and a bit tender for a few weeks so it's maybe a good time for you both to maybe just sit and chill for a bit. Everything is now just a waiting game and you can't do anything about what might happen tomorrow so try to just get as much out of today as you can.
Between you you will cope so now just a step at a time.
Look after each other.

Kevan
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User
Posted 27 April 2017 22:18:40(UTC)

All best wishes Lola . Fingers crossed for a smooth recovery and back to family times xx

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User
Posted 29 April 2017 18:45:20(UTC)

Hi all.

Updating Paco's recovery from da Vinci.

Still in hospital since Tuesday.

He was going to be discharged tomorrow but he will not due to some lymphatic fluid in the place his nodes used to be before removal 😏

Still blood in urine and drenaje catheter

No problem to poo.

Awaiting biopsy results. I don't know for how long 😕.

Scared because of the fact that nodes were finally removed.

Long days here.

I miss my house but mainly I miss a life disease-fear-free.

Thank you all your support.

Regards,

Lola

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User
Posted 29 April 2017 19:43:09(UTC)

Hi Lola
Very stressful for you but well done hanging in there !! I was in hospital 14 nights mainly because my drain was quite excessive ( I had 18 lymph nodes removed ) , and then it got infected around the tube into my body. Oh and I threatened to throw myself out of a window because my bipolar meds were withdrawn overnight , but that's a different story. I hope so much your results are clear x




If life gives you lemons , then make lemonade
User
Posted 29 April 2017 20:49:35(UTC)

It wasn't easy for you, Chris. I personally know, in adition to undergo OH cancer twice, how poorly one feels when suffering a mental disorder. Everything gets magnified and the suffering is unbearable.

Hope you are dealing well with both issues. I assume you are on treatment? Lithium?

I must take lots of pills to prevent anxiety and COD
Otherwise I couldn't stand this situation.

There are times in life when you don't think you can carry on.

I sympathize with you.

Something strange has just happened to Paco: he suddenly needed to pee. He then let it go and, despite the catheter, he started to pee freely. I wonder whether this is a good or bad matter.

Regards and my best wishes to you, Chris.

Lola

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User
Posted 30 April 2017 16:54:53(UTC)

Hi there,

OH has been discharged this morning. Not really feeling too poorly, but awaiting for final biopsy results is not an easy matter to deal with.

He is not so pesimistic as I am,

I am devastated, really scared by reading the discharge report.

I'll try to translate it the best I can.

Carcinoma 4+3 Gleason (high risk) (I thought G 7 was medium risk)

"Radical postatectomy",

"bilateral lymph nodes removal",

and a scaring word that is new to me. I don't know how to translate it.... "amplified", "extended". ("Ampliada" in Spanish) referring to prostatectomy.

"Awaiting for final histopathology results".

I'am afraid it all sounds really scaring, doesn't it?

The, uro had told us not to worry, but after having read this paper I am in panic.

Best wishes,

Lola.

User
Posted 30 April 2017 19:14:19(UTC)

You should try to calm down Lola, you seem to find it very difficult to trust the doctors even though they have many years of experience and know what they are doing. If the surgeon had opened Paco up for surgery and seen loads of spread to terrible places, he would have stitched him up again without doing the operation. If there is some small breach well that is no big deal really - they would just talk to you about the possibility of radiotherapy or hormones.

The important thing about the word 'extended' is what is its context ... what is the whole phrase or sentence?

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


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User
Posted 30 April 2017 19:36:26(UTC)

In Spanish "prostatectomía radical ampliada", something like "radical increased prostatectomy"

User
Posted 30 April 2017 19:43:49(UTC)

Referring to the operation itself.

User
Posted 30 April 2017 20:47:06(UTC)

I think it might mean either radical prostatectomy with lymph node removal or radical prostatectomy with nerve bundles not spared.

Since the surgeon already told you that the nodes had been removed and had mentioned that the nerves had been removed (possibly on one side?) this is not new information for you. He also told you that he didn't think the lymph nodes were affected so hold on to that thought until you get the proper results.

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


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User
Posted 03 May 2017 07:59:13(UTC)

OH 's recovery going on well. Concerned on too much fluid coming out from drain wound? Went to emergency. No.problem, normal and clean fluid, they said.

Still awaiting for post operation biopsy. Don't know whether they will phone or email us or we have to wait until next appointment, in .seven or ten days when we are supposed to meet surgeon again and have the catheter removed.

One question, are lymph nodes often/always removed in this surgical procedure? Does nodes removal mean nerves have not been spared?

Regards and thanks for your support

Lola

User
Posted 03 May 2017 08:35:42(UTC)

Hi Lola, in the UK we usually get the biopsy results at an appointment about 6 weeks post-op and not many men get to see their consultant in 7 to 10 days so it must be quite different in Spain, I think.

Re lymph nodes - in England it depends on the surgeon and hospital. Some remove the nodes near the prostate automatically and some remove them only if they are suspicious. At our hospital, they do not remove the lymph nodes in keyhole or robotic RP so if they think the nodes need to come out you have open surgery. Removing the lymph nodes can happen with the nerve bundles saved, and removing the nerves can happen with the lymph nodes left in place, or they can all be removed.

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


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User
Posted 03 May 2017 09:49:24(UTC)

Hi again, lovely Lyn.

Just an appointment confirmed: on the next Tuesday we'll meet the surgeon and he will let us know everything including post operation biopsy..

I'm afraid some RT or anything else will be needed.

I'm trying hard to become familiar to the journey we are starting these days.

I appreciate the helping support I'm getting from this site and pretty much from your care and knowledge.

Hug,

Lola

User
Posted 03 May 2017 20:05:29(UTC)

Hi all.

My husband had da Vinci 8 days ago. (tuesday). He was discharged on the last Sunday, 5 days after.

His drain catheter was removed.

Today, eight days after surgery, still leaking clean and not stinky fluid . Is this something we must worry about?

In emergency, he's was said it was normal as far as it was clean fluid, but it seems to be a big amount of fluid.

Information and advice would be appreciated
We are considering the fact of going to emergency again.

Thanks in advance

Lola

User
Posted 03 May 2017 20:49:23(UTC)

They have already told you it is normal, you should really try to trust the specialists more as they are in a better place to judge than we are!

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


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User
Posted 06 May 2017 05:30:01(UTC)

Good morning there.

Thinking of Eleanor and OH.

Now that I've been in this site from February I am concerned about all of you as if we are a great family helping each other.

The news hasn't been good lately here and it makes me feel sad.

As Paco is concerned, he is still feeling poorly in pain. The catheter is supposed to be removed on the next Tuesday. I haven't told him how painful the procedure is, according to want I have read here.

The pathology results will also be told to us that day but we feel more calm now that a friend of mine who is a consultant at a different hospital has got to know from her colleague at our hospital that the tumor was not spread. Anyway expecting for the appointment in three days.

Looking forward to coming back home and see my garden, my dog and everything there.

Best wishes to all,

Lola

User
Posted 06 May 2017 05:57:01(UTC)
Lola

Because of my ongoing problems I have been catheterised on about ten separate occasions over the three years, the removal of the Catheter has never been painful, it has varied from a strange sensation to feeling nothing. We keep saying this, stop worrying.

Thanks Chris
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User
Posted 06 May 2017 08:14:54(UTC)

Hi Lola don't worry to much about the removal of the catheter I never felt anything when mine was removed other than a sense of relief

 

 

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User
Posted 06 May 2017 13:51:52(UTC)

Hi Lola,

When I had a catheter I was in hospital and the sister asked a student nurse if she'd like to remove it. I was worried but she told me she'd done it and I didn't realise it was out.

Arthur

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User
Posted 10 May 2017 08:00:09(UTC)

Hi all,

Yesterday Paco had his first appointment with uro after operation.

The pathology results quite good :) Tumor contained inside the prostate. pT2a.

We were told that in some hospitals OH would be offered low RT since, despite being a contained tumor it's 4+3=7 Gleason, but not in that hospital and in his opinion. Frequent PSA tests and if under 0,4 (hope I got it right), no problem.

There is something in the biopsy I didn't like: perineural invasion. However the consultant didn't seem worried about it. Said it was much usual in this kind of tumors, do you know st about it? I've been googling but nothing clarifying found. Anyway, the uro said it was ok and, as Lyn says, I must beieve doctors and not let my imagination and fears fly.

No pain when catheter and stitches removed. Actually, as I had been said on here by some friends, he felt a great relief.

Almost continent first day.

PSA test in six weeks time and nwe appointment with uro.

Does it all sound correct to you?

We are happy we chose this nice and experienced surgeon. And a great hospital too, in Madrid.

Thanks to all of you for the support you have been giving me during these hard period. I'll continue to update and, as far as I am able, to help others with the experience now I have got.

Best wishes,

Lola.

User
Posted 10 May 2017 08:05:55(UTC)

So glad it's all good news for you so far Lola. Long may it continue

We can't control the winds - but we can adjust our sails
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User
Posted 10 May 2017 09:31:48(UTC)

Lola
All sounds really good so far. Especially total removal and good continence. The rest will come with time. Best wishes




If life gives you lemons , then make lemonade
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User
Posted 10 May 2017 13:22:11(UTC)
Hi Lola
Everything is sounding really good so I hope you and Paco will relax a bit now.
Great news.

All the best to you both.

Kevan

User
Posted 10 May 2017 20:49:15(UTC)

Thank you for the update Lola. All the best

Clare

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User
Posted 13 May 2017 05:33:17(UTC)

Hi all.

Back home wirh OH's prostate missing. It's good that getting rid of some part of of your body means a relief of worry and concern.

The RP has gone quite well and 5 days after catheter removal Paco is almost continent. Only when he sneezes or stand up etc etc he will leak a bit, so really happy.

I have a question. The consultant was quite happy about surgery and prognosis but there is something I read from the biopsy report I'm not sure about : "Perineural invasion". Maybe some of you may clarify.The doctor didn't seem to be concerned about it, but I wnat to know so far.

Thanks for your unvaluable support and best wishes to all of you.

Have a nice weekend.

Lola.

User
Posted 13 May 2017 11:33:44(UTC)

It would depend on the rest of the phrase Lola. Does it say "there was no sign of perineural invasion" or "there were signs of perineural invasion" or "the perineural invasion was extensive"? As you can understand we can't tell you what it means without you telling us the context.

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


User
Posted 14 May 2017 06:24:00(UTC)

Hi, Lyn, I'll try to translate the biopsy report,
Hope you may now understand. Sorry for my English. Moreover technical words are sometimes hard to translate.

-Radical Prostatectomy:

.Prostatic Acinar adenocarcinome grade Gleason 7 (4+3)
-Tumor takes up 10% volume of the prostate.
-Localised on left hand lobe of prostate.
-Extraprostatic extension is not identified.
-All margins are clear.
Perineural invasion is identified,
Vascular invasion on deferent conducts and seminal vesicles in nor identified.
.pT2a


-Vesical neck:prostatic tissue with no evidence of tumoral lesion
-Vesical neck, medium lobe: `prostatic tissue with no evidence of tumoral lesin
-Linfadenectomy: five nodes isolated (? insulated, separated???) with no met in any of them.

May all have a nice Sunday,

Lola.
-

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