likely to have PC

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

Morning Lola.
You are no more "psychologically weak" than the rest of us. Cancer is a HUGE and frightening word and causes a lot of us to panic initially.,

It's the not knowing that is hard to take. Once a confirmation of cancer is made and treatment offers decided on you will probably find that you settle into a new "normal".

It's true that life is never the same after the diagnosis, even for those who have non aggressive cancers and are able to go on the Active Surveillance treatment because that becomes their new normal.

We are all different but believe me when I say that we do all understand. You are not being boring or repetitive, you are being a
very worried wife whose husband prefers not to talk openly about his possible cancer.

Perhaps he thinks he is protecting you by not opening up old wounds. Our men can sometimes be very obtuse and I often wonder if they really know us, even after many years of being together.

You don't have to pretend with us at any rate. Panic away on here!!

Best Wishes and good luck to you both

Sandra

****

Edited by member 14 Feb 2017 at 18:41  | Reason: Not specified

The funny thing is that he has survived cancer before and probably feels quite calm because this is not a new situation to him. Kidney cancer is usually much more aggressive than prostate cancer so hold on to that thought - he beat it before and will beat it again.

Even if he does have some extra prostatic extension, he may still be suitable for surgery or radiotherapy, both of which are curative treatments. If the doctor and your report both say the lymph nodes look clear then these are good signs as well.

Edited by member 14 Feb 2017 at 22:21  | Reason: Not specified

Ah Lola, you are Spanish, after GB, my favourite country in the whole world is Spain. You come from La Coruña. Galicia, one of my most favourite parts of Spain, the best seafood in the whole world and the Albarino grape, heaven on earth.

Hi Lola
Please remember that you won't find out anything today, so don't build up any expectations. Just support your husband - the biopsy is uncomfortable but not painful - I have had 3 biopsies over last 13 years.
Good luck.
Chris

buena suerte Lola

Bri x

Hi
I had mine removed on Jan 4 17 by Robot in Leicester. Mine was small and it initially I was deemed contained but after it was deemed T3 . My op went really well . I've not seen anywhere where it can't be used if it's too big.
Al the best

Hi
I'm not Spanish I'm from Italian stock lol

Others will be along Lola but it looks good to me.

Not really - they are both G7 which is intermediate risk.

Lola,

I haven't had either a radical prostatectomy or radiotherapy so I don't have an opinion. However, I see you both seem to have already made that choice. 

Hey Lola,
From your biopsy results it seems that you have options when it comes to treatments. Your friend sounds like a great resource for you and i would take his advice and not make a decision until you have heard all the options and can compare them to see what is best for Paco.
So far our Da Vinci experience has been good and i am keeping my fingers crossed that his post op PSA comes back undetectable. After that we will deal with his anxiety.
Julie

Lola, it seems that the system is so different in Spain that we cannot give you any useful information. Paco has already had more scans than my husband has had in 7 years! In the UK, it varies from hospital to hospital - some would give every man a bone scan while others would do it only where there is reason to suspect bone mets.

In your case, you already know that they do not suspect bone spread ... they would not have offered him the operation if they weren't absolutely convinced that it is contained in the prostate gland. It would be good if you could get some help to develop some strategies for being less panicky.

Lola,
I am very pleased to hear that you have ongoing support available to you and also that your anxiety has subsided, at least for the time being. I continue to try and get support for my husband, one day he will be ready to accept it.
Julie

Hello Lola. It's probable that although you don't have the results of the scans, those who phoned you do.

They would not have offered  an operation if there is spread and remember they already have the previous MRI and biopsy result showing no seminal or node invasion.

Edited by member 25 Mar 2017 at 15:49  | Reason: Not specified

Hi there.

I want and need to share last news: Paco's bone and abdomen scan are clear, therefore date for Da Vinci is confirmed on April 25th.

The consultant has been explicitly and nice. At asking him about Paco's prognosis he said "que sí, mujer, que todo irá bien" (Yes, woman, it's going to be OK)

I'm aware of the possibility of Gleason to be upgraded on post operation histological results, but from MP MRI and other image tests the PCa doesn't seem to be spread. Crossing our fingers.

During the procedure they will take frozen samples into lab so they can decide what is necessary to be removed or spared.

Thanks for your support. Wishing to read good news from all of you.

Now on a trip to Western Spain, close to Portugal to meet our siblings and enjoy the beautiful spring there, in Extremadura, the place we both come from despite living in Galicia.

Best wishes,

Lola

Thoughts are with you Lola. Having a plan really helped us and it sounds like you have a great set of doctors and a robust plan.

Enjoy the time with your family

Clare

Lola, chemo is only used for men who are incurable as prostate cancer cannot be cured with chemo.

RT and HT would only be used if your husband's surgery failed.

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?

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

Edited by member 23 Apr 2017 at 12:17  | Reason: Not specified

Keep strong today Lola.. big hugs

Clare

Wishing you both the Best of Luck.

Hope everthing goes ok.

Steve

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.

*********

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

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

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?

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.

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

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

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

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.
-

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

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.

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.

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.

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.

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 19:21  | Reason: Not specified