Really Worried

User

Posted 18 Jun 2014 at 23:49

Well we saw the Consultant yesterday and it was well worth the money as we were with him for nearly one hour as he explained everything and confirmed the best option for Paul is surgery so Paul's operation is set for the beginning of August, this is going to be done with a laparoscope.
We feel very happy with everything the Consultant said and he answered all our questions before we had time to ask them! This guy is a experienced surgeon who has done many of these procedures, he told us that he did part of his training in America and now teaches other up and coming surgeons so we do feel confident with him.
We asked about nerve sparing and he explained that the cancer is on the left side of Paul's prostrate so he will have to cut some nerves to make sure it's all out. We also spoke about incontence issues and erectile dysfunction problems which really has worried Paul. However, tonight Paul spoke to a member of this forum on the telephone who had his operation a few weeks ago and he really helped and reassured hubby. I was so grateful to him!

One thing I want to ask is: when the consultant said he could do the operation in August he saw the look on my face and our daughter's as we were hoping it could be done in July (mind you I am quite an impatient person) and he obviously read our minds because he said he would give Paul a hormone to take whilst he's waiting for his op. He said it wouldn't disturb his testosterone levels but it would slowly kill the cancer cells. He added that Paul would get slight breast pain and might have some hot flushes. Has anyone else had this before their operation? He then looked at me and said that should put your mind at ease!

Paul has said he is going to enjoy these next few weeks and I know he will remain positive and up beat. He has now started to read this forum so maybe he will start to post himself.

Many thanks to everyone who has posted on this thread.

Wendy

User

Posted 19 Jun 2014 at 06:58

Personally, I would avoid the hormones and be less impatient. From now to the beginning of August is no time at all if you use the 6 or so weeks in between to get him as fit as possible, to do all your post-op shopping and try to maybe get a holiday in or at least time to do lots of what couples do! If the sex side of things is so important to him, I am not sure why he would want to take hormones that could reduce his libido to zilch in the short time when he knows it all still works. The specialist mentioned breast pain, did he also mention that small breasts may begin to grow and this side effect is sometimes permanent? Other side effects can include muscle weakness, joint pain and breathlessness although being on them for only 6 weeks, the muscle wastage might not be such an issue.

He may not get any of these side effects but it is better to know what he might be letting himself in for and then it isn't a shock if it happens.

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

User

Posted 19 Jun 2014 at 08:49

Hi Wendy,

my Gleeson reading is 4 + 3 and I have chosen to have the operation.my specialist here in Manchester has years of experience in these types of operations and he has given me the choice of either robotic or laparoscope. I asked him his opinion and the prefers the latter for the following reasons.Firstly there is no reliable evidence yet that the robotic method is better in any way.The NHS has stopped buying them until research proves that it is better. What he tells me is that you chose the surgeon not the method. The robot enables less experienced guys to do the operation and even then he is dependant upon the assistants to follow his instructions. he prefers the laparoscope way and that's what I have chosen. he has told me that I should have it within 3 months so I have chosen to go on my holidays first and have the op in September.I hope this helps. Good Luck

Raymond

User

Posted 19 Jun 2014 at 14:31

Thank you Ray, keep in touch and have a wonderful holiday.

Wendy

User

Posted 20 Jun 2014 at 21:15

Hi Wendy
Very similar stats age 62, gleeson 7, PSA 7.7, diagnosed in dec 2013 op was 28th April 2014. My surgeon advised me to wait for the new Da Vinci robotic that was installed in Feb 2014 at Nottingham city Urology. You need to feel confident with your surgeon , I looked at several options but kept coming back to the same surgeon and the Da Vinci robot. Catheter removed after 10 days , 99 percent dry after 4 days. Leaked less than 5 mm a day . Now had totally dry pads for 3_4 weeks. The wife and I can not agree if it was the skill of the surgeon or 4 months of pelvic floor exercises. I did not have nerve sparring too much disease so ED likely to be permanent. Today we got the prescription for Viagra and a pump. We have already enjoyed some incredible experiences without full erections, I did at times consider doing nothing, what an idiot. Three weeks after op I was told the removed prostate had positive margins, on Tuesday this week I got the all clear so positive margins can be misleading.

Hope all goes well Chris

User

Posted 21 Jun 2014 at 00:18

Hi Chris,
Viagra doesn't usually work unless you have retained some nerves. Did the person that prescribed the Viagra know that you had non-nerve sparing? Some find that the pump is all they need to be fulfilled but if you can't get on with it, worth asking about Muse or Caverject both of which can work without nerves.

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

User

Posted 21 Jun 2014 at 13:58

Hi Lyn

The ED consultant who prescribed the Viagra was aware that there was no nerve sparring. They are actually Sildenafil which is still Viagra ? The ED guy was a lovely person to deal with and the three of us had quite a laugh. When I saw my surgeon \ consultant he did say he would be surprised if Viagra would be effective. Took the prescription for the pump in today. Our relationship has strengthened and become more loving and intense since the op without any aids. I hope your own situation continues to improve.

Thanks Chris

User

Posted 02 Sep 2014 at 13:46

Hi it's Paul's wife Wendy here .

I thought I would update you on Paul's progress. He had his prostrate removed by laparoscopy on the 28th August. We went into hospital at 7pm on the Wednesday evening and Paul was first on the list the following morning.
Our consultant said that the operation normally takes 3 hours but he did Paul's just under 2.5hrs. He told us he was absolutely delighted with how it went, the cancer had not gone out of the capsule and he was able to do nerve sparring.

Paul came home on the Friday with his catheter and has been doing really well. He does tire easily but I make sure he goes to bed every afternoon for a good sleep. He is coping well with his catheter and it is due out shortly. I am injecting Heprin nightly to prevent blood clots.
The District Nurse has called and she was really pleased with his wounds etc the staples are coming out on Friday and our son is going to do this.

Paul has found this whole experience much better than he thought it would be and I have to agree. It has helped enormously that through these forums we have met a couple who had the operation done in April and they have been in daily contact giving us help and advice.

We go back to see the consultant in 2 weeks for the Histology.

I will update again after this consultation.

Regards to everybody going through this experience and if we can help anyone please feel free to contact us

Wendy

User

Posted 02 Sep 2014 at 14:12

That's good news Wendy. So very pleased for you and your husband.
Jane

User

Posted 02 Sep 2014 at 16:06

So pleased for you both, great to hear some good news, long may it continue, Fiona.

User

Posted 16 Oct 2014 at 16:42

My husband had his histology results yesterday after having his prostate removed and we were told his tumour was a little larger than they first though but his lymph nodes were clear and his margins were negative ( hope I have said this right) so it was good news.
His Consultant then went onto explain that he had to tell us about a trial that was being offered to men who had just had their prostrate removed. It seems there was two groups and one group would have a course of radiotherapy and the other group would have nothing. If you agree to sign up for this trial there is no way at the beginning of knowing which group you will go into. The Consultant said that we could go and listen to a talk on the subject first to get an insight into why they are running this trial etc

We are now confused and unsure whether my husband should do this, has anyone else been offered this and if they had what was their thoughts on the subject?
The Consultant said with my husbands results he wouldn't be offering radiotherapy and only would do so if my husband's PSA went up.

Grateful for any comments, thank you

User

Posted 16 Oct 2014 at 21:10

Hi Paul,

The purpose of the trial is to consider whether there is benefit from from early follow up RT after RP. Until the trial is concluded it is not possible to make an assessment. If your husband is keen to have RT fairly soon, the only way he stands a chance of getting this from what your consultant has told you would be if he is draw into the RT arm of the trial or after his PSA begins to rise, should this be the case. RT following RP is thought to improve the outcome of RP in some cases but it has to be established whether it is better to have the RT soon after RP or wait until PSA rises (if that happens). RP does the job for some men who may not need RT so they might be having radiotherapy they don't need in a bid to improve their overall chances of ending their cancer. Rather depends on how a man sees it.

Barry

User

Posted 16 Oct 2014 at 23:50

Thank you Barry, my husband does not want to go on the trial as he doesn't see the point unless his PSA rises. It's my daughter and myself who thought we should at least go to the lecture and listen to some of the facts. What we won't do is pressure him in anyway as it has to be his decision entirely.

I would love to hear if anyone on these forums has gone on these trials.

User

Posted 18 Oct 2014 at 10:35

Just a quick update, Paul has just had the results of his first PSA blood test and it was 0.001 undetected! Such wonderful news after so many months of worry.

User

Posted 18 Oct 2014 at 11:01

Excellent news for you all. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Have a great weekend.

Dave

User

Posted 18 Oct 2014 at 12:29

Originally Posted by: Online Community Member

Just a quick update, Paul has just had the results of his first PSA blood test and it was 0.001 undetected! Such wonderful news after so many months of worry.

Brilliant news!

During one consultation before my surgery the RADICALS trial was mentioned to me...

However, during my follow up consultation after surgery together with my histology report the subject was not mentioned again, so I assume I was either not eligible or it was deemed not appropriate?
My PSA levels at 6 weeks post op were < 0.01 ( undetectable ) so I was happy to leave things as they were and not inquire about the RADICALS trial....

Best Wishes

Luther

User

Posted 18 Oct 2014 at 23:06

Congratulations Luther, we have decided not to do the trial as my husband said he has enough and just wants to concentrate on the incontence and ED.

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