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User
Posted 15 Mar 2017 at 19:00

We have met two different urologists today.

The first one recommended da Vinci. He said in case of RT, it would be necessary a constant control of him. On the other hand, if RT doesn't work it would be likely that surgery couldn't be done on a prostate that has been treated with RT.

And moreover he mentioned that since Paco has one only kidney it was better that way. I assume it's due to possible risks of blaming his one kidney or next areas?

Second urologist was more conservative and didn't want to decide yet. He said he first needed ganmagraphy and scanner and then will recommend options available.

Paco is determined to get rid of his prostate. I agree.

I would like to have your opinions or suggestion.

Best to all,

Lola

User
Posted 16 Mar 2017 at 08:04

Hi all.
My last post didn't appear here. I'm not sure it will later appear, anyway I'm rewriting it. Sorry if it is duplicated.

We're met two different urologist yesterday.
Dr. X said the best option is Da Vinci as if RT, Paco would have to be all the time been tested. He also said that because of his age, 68 (don't know whether he meanr old or young), much better like this. On the other hand, because of his having one only kidney. (I assume that RT might be dangerous for it or next areas?? ). And he also said that if case RT wouldn't work, it is likely that his prostate couldn't be removed later. He ordered a Gamma and TAC. He said "this is the right way to proceed, but I guess both Ganmagraphy and TAC will be OK". This fact made the matter softer to us.

The other urologist, in the afternoon, said he needed TAC and Ganmagraphy before suggesting treatment.

Paco has decided to get rid of his prostate and I agree with him. Not sure whether it is the right decision but we are so scared...

I would like to read some suggestions and advices from you.

Best to all of you.

User
Posted 16 Mar 2017 at 08:56

Originally Posted by: Online Community Member


Paco has decided to get rid of his prostate and I agree with him. Not sure whether it is the right decision but we are so scared...


I would like to read some suggestions and advices from you.


 



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. 

User
Posted 16 Mar 2017 at 09:35

Whether he has RT or surgery, he will always have to be tested for the rest of his life Lola so don't let that cloud your decision in any way.

In the UK, men wouldn't have all these scans, TAC and gammas that Paco is being told he needs.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Mar 2017 at 10:07

I know, Lyn, he will have to continúe to be tested all the time. I am not sure what the urologist meant by that. Paco had kidney cancer thirty years ago when he was thirty some, and he was strictly tested despite his kidney having been removed.

Concerning to tests being done in Spain I'm afraid my translation wasn't good enough. I think they1similar to the British ones, different names.

They are doing him bone scan. Nuclear test. We call it Ganmagraphy. And TAC, it stands for "tomografía axial computarizada". Kind of many RX images of his abdomen "in small pieces".

Right now driving back to our city. Paco is supposed to talk with an oncologist in La Coruña. Our best friend has been the manager at Oncological Centre up to a few months ago and had asked an oncologist from there about Paco's biopsy results and, actually, he said on the phone ". Wait, don't make a decision, meet and talk to me first".

I'm not sure its the right decision but... We are scary.

We have the feeling that surgery is more likely to work..
There is a big mess in my mind anyway.

Thank a lot for your replies. I'm lucky to have found out this site and these wonderful people. You are helping me a lot.


Best wishes to all of you,

Lola

User
Posted 16 Mar 2017 at 11:21
Hi Everyone,

I am a first timer on here so excuse any errors.

I am 44 years of age and its looks like I will be given a PCa diagnosis soon.

I went to the docs and had some blood work done and they actually tested my psa in error - it cane back at 3.25.

I was sent to a urologist who found a nodule in the apex region and wanted an MRI.

The MRI is now back and the nodule is 9mm and cancer can't be ruled out.

I am now waiting to be booked in for a biopsy

I have no family history ans don't sit in any of the high risk groups

Can anyone advise what % of biopsy find cancer and if a 9mm nodule is small, medium or large.

Thanks you all - with two small kids I am beside myself

Lee
User
Posted 16 Mar 2017 at 11:53

I'm sure someone more experienced than me will soon give you some response.

My husband has just started this journey. His nodule is 11mm. I didn't think yours is that big.
Don't panic, in any case there are many options for treatment. That's what we've been said.

I'm bumping it up so you (and I, by the way) get replies from these nice helpful people.

Good luck!!

Lola

User
Posted 16 Mar 2017 at 11:57

Hi Lee,
I would copy your text in to a new post of your own so that it doesn't get lost here and people will be better able to answer your specific queries.
In the meantime to give you some reassurance my husband also 44 and with 2 kids had a very similar diagnosis to you. He opted for a radical prostatectomy (da Vinci) and had his prostate removed mid Feb. He will have blood test next week and follow up with consultant the week after to find out if it was successful or he needs follow up treatment. From his pathology report his tumour was 95% Gleason 3 and 5% Gleason 4. Max dimension of tumour was 17mm and contained within the prostate. With this in mind we are hopeful that for us the removal will be the end of treatment.
He is also fully continent and thanks to a very skilful surgeon and full nerve sparing is also having very few issues in the erectile disfunction department.
All the best
Julie

User
Posted 16 Mar 2017 at 12:21

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

User
Posted 16 Mar 2017 at 12:29

Thanks, July.
We'll talk with that oncologist
I don't think Paco refuses to talk, allthoug he seems to have made a decision.
We are arriving home in a couple of hours so I guess he will give a phone call to our friend.
It's sad how suddenly life can change. I was expecting spring time to garden and see flowers blooming. Now i don't care about it.

Lola

User
Posted 16 Mar 2017 at 14:04

I know it is very difficult and for my husband like you more so. But i am looking out of the window now and the sun is shining, the blossom is coming on the trees and i am still looking forward to the summer. A time beyond the surgery when we can again enjoy time as a family in the fresh air. Here life has to go on, our children who are only 5 & 7 demand it, you too will come through this time and the difficulties of the present will fade.
Julie

User
Posted 16 Mar 2017 at 14:51

Julie, that's just what I am looking forward now: to enjoy summer with my children and grand children, to look at life as I used to, to feel the sunshine and and care my flowers, but this dark cloud doesn't let me do. My family is my life, my focus, my everything.

You have almost made some tears slide on my cheeks.

I went through this scenario when my children were the same age as yours currently. Paco had a kidney cancer. We took long time to become certain that it was CURED, as the urologist said to me. Now again.
I know how you're feeling. Despite the different moments in my life, it's again the same nightmare.
I hope both your family and mine are doing well and have the possibility to enjoy life again.
I can see from what you wrote that hubby is going OK. I'll follow your updates with all y heart.
My best wishes. I really appreciate your post.

Love,

Lola

User
Posted 20 Mar 2017 at 21:08

Hi all,,

On the next Wednesday my husband is having his bone scan, then on the Thursday. CAT. Does somebody know how long the results take to come out?

Are these tests always done or it means there is high suspect of cancer spread to bones and other places in the body.

I'd appreciate some response, I'm scared.

Xx

Lola.

User
Posted 20 Mar 2017 at 22:20

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Mar 2017 at 02:22

Thanks, Lyn.
You are so knowledged, supporting and helpful!
I've got awake in the middle of the night. Bad nightmare.

Lola

User
Posted 21 Mar 2017 at 03:21
Hi,

I hope you manage to get some restful sleep and no more bad dreams.

Take care of yourself.

Steve
User
Posted 21 Mar 2017 at 14:03

Hi Lola,
I hope you managed to get some more rest. You said in one of your previous posts that you have had psychiatric support in the past. Have you been back to your doctor recently for some new help given the recent events. If you haven't maybe it is time to go back and discuss it with someone so that you can give your husband the best help you can and also get some help for yourself. For someone with anxiety the waiting and testing and waiting routine is very difficult to manage and even now that Paco has his diagnosis it doesn't stop. It is almost 2pm now and my husband still has not got out of bed because he is too scared that he will do something wrong. The reason for this is that he had his post operative PSA test yesterday and now has to wait for the results which has sent his anxiety spiraling out of control. This is far worse for him than it need be because he is refusing any psychiatric support. A little boost of treatment for you now could make all the difference for you. I know that counselling has helped me get through the last few months.
All the best
Julie

User
Posted 21 Mar 2017 at 14:55

Hi, Julie.
I appreciate your advice and, in deed, you’re right. I’m afraid I am similar to your hub. You’re like my husband: strong, confident etc.
I’ve been on psychiatrist treatment for years and I continue to be, due to my permanent anxiety. Anyway , believe it or not I'm feeling better now despite having Paco’s diagnosis of Pca. Actually we are currently driving to Madrid for his bone and pelvis scan and no anxiety now. Fear, of course, but I can control it.

I know I must be strong enough to help my hub go through this situation and not be an extra burden to him.

In case there came a moment when I can't bear my fear and am unable to help him I immediately would come back to my psychiatrist and ask for help again.

By no means can you persuade hub to ask a psychiatrist for help ? Tell him from me that we sometimes distort reality and suffer more than supposed to. From an anxious lady to an anxious gentleman : )

Thanks again for caring Paco and me. You are extremely supportive. All people here are.
My best wishes for you and hubby. Let's hope everything is going to be OK.

Lola


User
Posted 21 Mar 2017 at 14:57
Thanks, great runner! Great man!




User
Posted 21 Mar 2017 at 15:23

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

User
Posted 25 Mar 2017 at 05:49

Good morning there.

Yesterday my OH had a phone call from the hospital in Madrid. They have given him an appointment for Da Vinci surgery on April 25th.

Still we don't have the post biopsy results : bone and pelvic scan. We are meeting the surgeon next week (coming back to Madrid again). He recommended Da Vinci. I hope he doesn't change his mind about this surgery because of supposed bad results of theese tests. I can't help thinking to myself that something new is going to be shown in his bone and abdomen despite de MP MRI previous to biopsy (4+3 Gleason) said no seminal or nodes alterations.

Just wanted to share it with you.

Have a nice day,

Lola.

User
Posted 25 Mar 2017 at 11:50

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 14:49  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 25 Mar 2017 at 11:57

Your may be right. Your points of view, suggestions and help already bring me some relief :)

I hope once I get used to the new situation I will also be able to help other members with my words.

Thanks a lot.
Lola

User
Posted 27 Mar 2017 at 08:33

Hi all,
I have a new question -always trying to get information from you-. Why has the surgeon offered Da Vinvi before getting the bone and pelvic scan results? I'm afraid once they come out he changes his mind because of bad results.
One's mind cant stop wandering (wondering?). We are seeing the surgeon on wendsday and I am very nervous.

Are the parmetric MRI and biopsy conclusive enough to make a decision?

Wishing you a nice week, worries free and calm.

User
Posted 27 Mar 2017 at 09:33

Lola,


Only the surgeon can answer your question. I can't. Sorry but you do seem keep focusing on the worst possible outcomes rather than hope for the best. I can't believe this is doing any good for you or Paco.

User
Posted 27 Mar 2017 at 09:52

Don't worry about it, I keep my bad thoughts and worries to myself. Actually today is our 41th wedding anniversary and we are celebrating it . He is seeing me watching tennis on tv, enjoying our grandchild Jaime who lives 14Km, from home etc etc.

But I can't help doing so inside me, and well, I tell you, members here, about my concern and it helps a lot. You are my suppor and shoulder to lean on at present time. This way I can keep positive in the presence of him.

Thaks a lot for your suggestion and advice. Anyway I'll care about not doing bad to Paco.

Best wishes,

Lola.

User
Posted 29 Mar 2017 at 15:36

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

User
Posted 29 Mar 2017 at 16:13

Really pleased to hear your news Lola. I hope that this gives you some peace so that you can enjoy this break with your family.
Julie

User
Posted 29 Mar 2017 at 16:16

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

User
Posted 29 Mar 2017 at 18:32

Brilliant news Lola. Enjoy your holiday.


Hugs


Eleanor


x

User
Posted 30 Mar 2017 at 15:49

Excellent news Lola.

Time to accept what the specialist says and just enjoy the next couple of weeks. Enjoy your holiday with family and friends.

We can't control the winds - but we can adjust our sails
User
Posted 04 Apr 2017 at 11:29

Hi al.

Maybe what I'm asking is a silly question as it all depends on what will be found from da Vinci op . Anyway: the surgeon had not mentioned RT, HT or chemo. I assume some of these therapies may be necessary?

His last PSA was 4,2 and 4+3=7 Gleason.

Best to all

Lola

User
Posted 04 Apr 2017 at 12:33

Sorry, me again.

My husband wants me to ask about Da Vinci post operation. Any information from someone who has gone through this would be appreciated . Was it painful? Could you easily pee, for how long did you have the catheter, etc. The date is coming closer and closer, like a scary zoom :(

Thanks in advance,

Lola.

User
Posted 04 Apr 2017 at 13:00

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Apr 2017 at 13:02

Thanks, Lyn. You're anyways wise and supportive.
Hug

Lola

User
Posted 04 Apr 2017 at 13:58

Typo
Anyway= always

User
Posted 04 Apr 2017 at 16:03
Hi Lola
After the operation I was walking around in the ward about an hour after arriving there from recovery but was taking pain killers. My testicle were bruised and swollen and there was discomfort in this area for a couple of weeks. I wouldn't say that I experienced any pain just some discomfort. I had the catheter in for 8 days. I had no problem peeing or any discomfort from the catheter. After the catheter was removed I had incontinence for about 5 months and leak even now if I sneeze or cough violently.
We all have different experiences post op but he needs to remember that it is major surgery so he must give himself time to recover.
All the best.

Kevan
User
Posted 04 Apr 2017 at 16:38

Thanks a lot for narrating your experience.

I'm translating it for my husband and letting him know, as you say, he shouldn't forget it is major surgery.

Good luck with your PSA.

LOLA.

User
Posted 07 Apr 2017 at 15:39

Hi there,

As usual I've got a question for you, those who may know and have a response about it for me.

My husband's PSA previous to biopsy was 4'2. Three weeks after biopsy it has shot to 4'82. There could be any relation between biopsy and PSA increase after 3 weeks?

Regards
Lola.

User
Posted 08 Apr 2017 at 00:20

Hi Lola,

As you know I have no medical training so only have our experience to report.

We were told a PSA after a big biopsy was pointless because the biopsy would make the prostate very unhappy until it recovered.

My husband had to wait 3 months after the biopsy before they did another PSA.

Regards

Clare

User
Posted 08 Apr 2017 at 04:40

Thanks, Clare, Very clarifying.

How is OH doing? Still in the US?

Hope everything is going well.

Hug from Spain,

Lola.

User
Posted 10 Apr 2017 at 00:15

Hi Lola,

Back in England now and OH doing well thank you. He has blood in the urine as expected and a dull aches from time to time. The consultant said no heavy lifting and zero exercise apart from walking. He is back at work tomorrow but keeping his diary light all being well. The consultant said his prostate will be swollen for around 3 months.

He also has reacted to the low dose Cialis 5mg per day to help blood flow - he got the list of side effects! .. Rash, headache, back ache, leg ache! So we e mailed the US team and they replied to stop straight away so medication wise he is just on his flow max ( the alpha blocker) now. No further issue of retention, no incontinence and flow improving but still not back to speed. Reverse kegals help when he is peeing!

I hope you are OK

Regards

Clare

User
Posted 10 Apr 2017 at 06:13

Hi, Clare,

Back to work? That's great.
I'm glad OH is doing well and consequently, your concern and worries are relieved.

Sorry, what does "kegals" mean? Maybe pelvic exercises or something like this?

On my part, we are awaiting the date 25th. We'll be going to Madrid on the 18th so OH has some last test before operation and meet the surgeon. I hope Paco will do as well as your OH.

Congrats!! You've overcome the dread. Now, enjoy life but keep care.

Regards,

Lola.

User
Posted 10 Apr 2017 at 22:08
Thank you Lola, it's v early days and of course my OH had no symptoms so wasn't ill in anyway before the procedure. So yes he has gone back to work today but trying to be sensible whilst his prostate forgives him for the rough treatment it has been put through!

Kegels are pelvic floor excercises and he was taught to do three in reverse so as to completely relaxthe pelvic floor a few times each day and then when peeing so as to help with the flow during recovery. He finds it very helpful as his flow is still not back up to pre procedure speed but is improving.

Good luck with Madrid We are getting on with life with fingers crossed for next PSA test ( first post procedure PSA) .

Big hugs Lola

Clare
User
Posted 11 Apr 2017 at 08:19

Hi all.


I often read here about "clear margins" post operation. I don't know what that means. As my OH is shortly having Da Vinci surgery I'd like to know what it is. I guess it has something to do with histology, PCa being spread and so on? I'd appreciate if someone explained it to me.


 


Regards,


 


Lola.

User
Posted 11 Apr 2017 at 11:58
Lola clear or negative margins generally means the surgeon has got all the cancer cells . Positive margins mean there are cancer​ cells near or at the edge of the organ/ tissue that is removed. If the cancer cells are at the edge of the removed tissue there is a chance that there "might" still be some cells left in the surrounding tissue that is not removed.

Some hospitals now offer RT soon after surgery if there are positive margins. I had my DaVinci three years ago and unfortunately the PSA has risen and I have just started salvage RT.

Hope all goes well.

Thanks Chris
User
Posted 13 Apr 2017 at 06:53

Thanks, Chris.

I've read your profile. My husband is also Gleason 4+3=7 PSA 4.2 an then , after biopsy procedure, 4´7

Off the MP MRI previous to biopsy seminal vesicles, nerves and nodes din't seem to be afected but the report said there was a possibility of minimal extraprostatic afectation. Does it mean margins might be positive after surgery?

Sorry for asking so many questions, but the Da Vinci is coming in a few days and as time goe I'm becoming more and more nervous.

Thanks again.

Regards, Lola.

User
Posted 13 Apr 2017 at 06:55

Sorry, I still have one more question: did you have, or do generally people have biopsies during operation?

Lola.

User
Posted 13 Apr 2017 at 07:12

Hi Lola
The prostate gland in its entirety is removed as skillfully as possible. I watched a video and it's really difficult work. The whole organ is surrounded by muscle , tissue , nerves etc. it defeats me how they do it at all. When they take the gland to the lab they check for cancer cells wherever the scalpel has made a clear cut. Obviously if they find cells on the edge then it's likely they have left cells behind in the body. Also the gland is re biopsied and the Gleason score is often upgraded under lab precision and conditions. It's not a nice disease and a difficult operation. 50% of men that have the op go on to need radiotherapy at a later date like Chris above and many others on this site. And even after RT up to 40% get further recurrence. As Lyn said , at her hospital they offer the op immediately followed by RT which is called adjuvant treatment rather than salvage treatment.
Best wishes and fingers crossed for you


If life gives you lemons , then make lemonade
User
Posted 13 Apr 2017 at 07:45
Lola

I think there was one guy who had a "live" biopsy during his op, in simple terms I think they take a sample of tissue during the op and test it while the patient is still on the table too see if they have got it all.

As CJ has said they check the prostate post op and regrade it etc.

Does "extraprostatic extension mean positive margins ?" Not really sure I can answer that, my assumption is that even though it means the tumour has broken out of the capsule​ if they cut it all out the margin at that point would be negative. Of course it could be positive it another part of the removed tissue. I am sure someone will have a definite answer.

Hope all goes well and try to stop worrying.

A couple of tips for the first days post op, Do not get constipated and no straining to pass the first motions. Keep mobile but no running marathons.

Thanks Chris

Edited by member 13 Apr 2017 at 07:47  | Reason: Not specified

 
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