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Old 07-29-2012, 03:34 AM   #16
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Re: Confused, Anxiety, All so fast - what next?

Quote:
Originally Posted by starr15 View Post
Interesting Eddie. MR imaging after the diagnosis of low grade low volume prostate cancer is not done commonly in the USA. I think the UK and some other parts of Europe are on the leading edge in the use of MRI in prostate cancer. Prostate MRI in the US is steadily increasing but still not widely available.
I was just wondering if an MRI for low grade low volume cancer found on biopsy was standard practice in the UK.
Dont know if its standard. Just back from voluntary work running a jamboree for Scouts & Guides for the week. My letter was waiting, MRI date is 7th August. It says Abdomen and Pelvis. Lets see what the results say.

All the best Eddie

PS - Third Edition of Walsh and Washingtons book Guide to Surviving PC has arrived. A big read.

 
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Old 08-07-2012, 02:01 AM   #17
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Re: Confused, Anxiety, All so fast - what next?

I have just started to read Dr Walsh's book Guide to Surviving Prostrate Cancer (3rd ed). I was amazed to read that each biopsy needle only samples one one-thousandth of the prostrate. So I can see now why it is so easy to miss cancerous cells and why emphassis must be placed on PSA and other screening. The UK Guidelines from NICE and operated both on NHS and privately recommend AS with 3 monthly PSA testing. I have already had two PSAs 4.2/5.3 - they didnt give me my FreePSA score after the last test. Suspect I will be due another early September, though I will still be debating my choices and getting second opinions then.

Will keep the board and yourself updated.

Many thanks

Eddie

PS - going for my abdomin and pelvic MRI's this afternoon.

Last edited by Administrator; 08-07-2012 at 11:46 AM.

 
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Old 08-16-2012, 05:56 AM   #18
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Re: Confused, Anxiety, All so fast - what next?

Ah well - had my meeting with the Urologist yesterday and he confirmed that the MRI says the cancer is organ contained.

He is not recommending Active Surveillance despite the fact he staged it as T1c and it has a Gleeson 3+3=6.

He wants to do a Nerve-Sparing Radical Prostatectomy via keyhole, he had a preference for that over radiation. However when I asked what nerves he will save he said left side only and used the excuse that he couldnt guarrentee clearing all the cancer if he left in the right bundle of nerves. Am not happy as I queried this as it goes against everything i have read.

Suspect there is something I am not being told. I asked for my prostrate volume and he said it was 33. If this is correct then Epstein's research would say my PSA should have been around 3.3 and it was 5.3 - that would indicate an aggressive cancer not a low risk. Also the Density would be 0.16 again indicating aggrerssive. Also my freePSA was only 8% which would also tie into these findings.

Could be that this is why they dont recommend AS and want to do surgery - but it all didnt add up.

Am getting a second opinion and will be quizzing the new consultant. In the meantime I am in a holding pattern of Active Surveillance.

Was a little annoyed as the urologist couldnt give me any idea of how much caner was on the MRI's and locations.

 
Old 08-16-2012, 08:12 AM   #19
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Re: Confused, Anxiety, All so fast - what next?

What type of MRI procedure?

Mine was one of those mutil parametrics, it showed 8mm suspicious spot - central zone. How accurate that was I don't know. I will find out this coming Monday when my Uro gets back from vacation (biopsy done on Aug 3rd).

mP

Last edited by Akai; 08-16-2012 at 08:13 AM.

 
Old 08-16-2012, 11:18 AM   #20
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Re: Confused, Anxiety, All so fast - what next?

I dont know. I think it was a 3|T machine. They did an Abdomen MRI followed by a Pelvic one. When I go for the second opinion I am going to ask for detail of the MRI results. Just doesnt add up.

 
Old 08-16-2012, 11:38 AM   #21
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Re: Confused, Anxiety, All so fast - what next?

Eddie, Please keep us posted on your second opinion. As I mentioned in an earlier post, my stats are similar to yours and I am following AS. I asked my Urologist about doing an MRI, his comment was it wouldn’t tell us anything. I read that a MRI cannot pick up small amounts of Cancer. The tumor has to be large enough usually in stage T2. Is this true, can anyone confirm or elaborate on this???

 
Old 08-16-2012, 01:55 PM   #22
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Re: Confused, Anxiety, All so fast - what next?

Hi Eddie,

In my experience urologist-surgeons are often a pain in the keester to deal with, and some of the best ones are the biggest pains, unfortunately.

You wrote:
Quote:
he confirmed that the MRI says the cancer is organ contained.
You should understand that there are many different kinds of MRIs. I suspect that all they were looking for for you was a bulge in the prostate that would have been a good clue if there were any extra-capsular extension going on. Not finding that, or any obvious lumps in your prostate, there is a very high probability that the cancer is fully contained, and that your stage is T1C. As cancer diagnoses go, your stage, grade and insignificant amounts of cancer are all good signs.

There are several so-called parametric MRIs (e.g., diffusion-weighted, spectroscopic, T2, etc.) that are done with an endorectal coil in place in your rectum to focus the magnetic lines of force. They may be able to see some of the larger nodules. They were not required in your case, because they already detected some cancer with the biopsy. They are sometimes used when the biopsy is negative yet PSA remains suspiciously high.

If it were me, I would still send the biopsy slides to a lab specializing in reading PC slides (e.g., Bostwick or Epstein). You would not want to react to something that may not really be there.

Quote:
He is not recommending Active Surveillance despite the fact he staged it as T1c and it has a Gleeson 3+3=6... He wants to do a Nerve-Sparing Radical Prostatectomy via keyhole, he had a preference for that over radiation.
Typical uro-surgeon response. Based on the insignificant amount of cancer in your biopsy, you are certainly a good candidate for active surveillance, since you match all the Epstein criteria for "very low risk." You might want to visit a center that has a good Active Surveillance program. Also, you might want to meet with a radiation oncologist to explore other treatment options. Another option is focal therapy, which may at the very least extend your time on AS.

Quote:
However when I asked what nerves he will save he said left side only and used the excuse that he couldn't guarrentee clearing all the cancer if he left in the right bundle of nerves. Am not happy as I queried this as it goes against everything i have read.
I infer from his comment that the core with the cancer is in the right base. If that is the case, what he is telling you is true.

Quote:
If this is correct then Epstein's research would say my PSA should have been around 3.3 and it was 5.3 - that would indicate an aggressive cancer not a low risk. Also the Density would be 0.16 again indicating aggressive. Also my freePSA was only 8% which would also tie into these findings.
I'm afraid that that Epstein's formula is not that precise and there is a great deal of variance. PSA density is just not that good an indicator on its own. Even the measurements of prostate size are not very accurate when compared to the actual prostate volume after RP. Also, Gleason 5 cells will often put out less PSA than Gleason 3 cells, so it is not a good predictor of aggressiveness. The Gleason score and the volume of cancer found on biopsy are your best measures of aggressiveness. .16 is a borderline value and tells you almost nothing.

Quote:
Also my freePSA was only 8% which would also tie into these findings.
Again, free PSA is a useful indicator of whether or not to have a biopsy. You've already had one and know what's in there, so free PSA is not very useful to you now. Free PSA is not very sensitive to cancer and there is a great deal of overlap with BPH.

In Europe, you can get a new test called the Prostate Health Index (PHI) based on a form of free PSA called [-2] ProPSA. It is far more sensitive and specific than PSA or free PSA (it incorporates both) and varies more with Gleason score. Again, it is moot, because you have already had a biopsy and know what you are dealing with. However, it may be a good measure to add if you decide to go on an AS program.

Another measure that is pretty good at distinguishing cancer from BPH is the PCA3 test. A new test called TMPRSS2:ERG fusion may get approved by the FDA this year. It may be able to distinguish indolent cancer from aggressive cancer. However, not all prostate cancers express these indicators.

On many AS programs they recommend a second biopsy after a year to check for progression and sites of cancer the first biopsy may have missed.
Was a little annoyed as the urologist couldnt give me any idea of how much cancer was on the MRI's and locations.
MRIs won't show that unless the tumors are quite large, which yours apparently isn't. There are other tests like color doppler ultrasound that can see many of the smaller lesions, but reading those is something of an art and is not very widespread.

- Allen

 
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Old 08-17-2012, 05:00 AM   #23
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Re: Confused, Anxiety, All so fast - what next?

Tall Allen, I know your response was to Eddie but there is a lot of us out here that appreciate your comments and knowledge. Thank you.

 
Old 09-20-2012, 12:52 PM   #24
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Re: Confused, Anxiety, All so fast - what next?

I had a second opinion privately last monday with a top urologist in the UK. He was sent all the information from the hospital including the details from the MRI. He confirmed that they had also found cancer in the central zone - this had shown up on the MRI. Putting that to on side we went through all the treatment options and the log terms pros and cons. We also went through my own health and family history.

A key factor that we established was that my wife and myself dont want anymore children. So a question to ask was , if we dont want children why would I want to retain an organ in my body thats only useful purpose was in fertilization and now had cancer in it that at some time could break out.

Knowing I have a family history - my father - it didnt make sense.

So - if I could have a chance at a 'cure', have a chance to minimise side effects, incontinence, at retaining sexual function (though no seminal fluids) .. would it not be worth going for it?

Being young, 52, healthy - never been in hospital before, i also climb mountains as a hobby, dont smoke. The odds are stacked in my favour.

The surgeon I was with does keyhole and robotics, but he has also done over 2000 RP's of which he has done over 400 with bilateral nerve sparing - one of the largest caseloads in the UK. His patient outcomes are all monitored and measured. I would fall into his index cases for long term monitoring.

It was a no brainer really - there was no way I fancied the radiation treatment and anyway, if surgery failed then radiation can come later.

So did I want keyhole or robotics ? Or did I want his technique at bilateral nerve sparing.

I have opted for the Open Radical Prostectomy with Bilateral Nerve Sparing. Am going to have a go at what they call the golden ticket. Then I dont have to have the anxiety of AS. Its going to be 5 days in hospital and a longer recouperation at home, but hey, its leading up to christmas.

Thing I like most about all of this. After all the books and whitepapers I have read and all the online advice, it boils down to trust in your surgeon. I have found one who i have every confidence in. If things dont go as planned, he will have given his best shot at it.

I am happy.

I go in for my op on 9th October 2012.

( By the way - the UK NHS lined me up for a second opinion in December !!! )

Last edited by Administrator; 11-22-2012 at 08:31 AM.

 
Old 09-20-2012, 04:19 PM   #25
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Re: Confused, Anxiety, All so fast - what next?

Quote:
The surgeon I was with does keyhole and robotics, but he has also done over 2000 RP's of which he has done over 400 with bilateral nerve sparing - one of the largest caseloads in the UK...So did I want keyhole or robotics ? Or did I want his technique at bilateral nerve sparing...I have opted for the Open Radical Prostectomy with Bilateral Nerve Sparing.
The experience of the surgeon at performing that specific technique is the single most important factor in determining the outcome, and it sounds like you've found a very experienced surgeon. I'm a little confused by what you said. There are three kinds of radical retropubic prostatectomy:
  1. open
  2. laparoscopic (keyhole)
  3. robotic laparoscopic (Da Vinci)
Surgeons usually prefer one or the other for various reasons (e.g., less blood loss, quicker recovery, haptic feedback), but the only factor that makes a difference in the long run is which the surgeon is experienced in. There is a steep learning curve, in switching, say, from open to robotic. A surgeon proficient in one is usually not proficient in another. Rule of thumb is that experience of about 1000 in that technique is necessary.

The other aspect that the surgeon gets better with over time is getting negative margins. The best surgeons get a positive margin rate approaching 10% while beginners may get positive margin rates of over 20%. You can ask your surgeon for his personal stats on % positive margins in the last year.

Nerve sparing is available with all three kinds of surgery. In fact, most men who have laparoscopic or robotic surgery get it done with bilateral nerve sparing.Whether erectile function is maintained after nerve-sparing surgery is a crapshoot and we are only beginning to understand the causes. It seems to be a good idea to start penile rehabilitation (ED meds) even before surgery. Permanent atrophy of penile tissues can begin immediately after surgery, so preventing it with ED meds may help retain full length and function.

By the way, salvage radiation after surgery carries much worse morbidity than primary radiation therapy, just as salvage surgery after radiation has worse morbidity than primary surgery. There are other better options for salvage. With any luck, salvage treatment will not be an issue.

I hope you get that "golden ticket" -- what a great Xmas present that would be!

- Allen

 
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Old 09-21-2012, 03:12 AM   #26
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Re: Confused, Anxiety, All so fast - what next?

Allen

Thanks for the reply. I agree with you and with regard to the crapshoot thats why I have looked for one of the best shooters in the UK. My surgeon works out of a major NHS hospital in the UK in the Midlands, plus he has multiple private practises, including a centre of excellance both in London and Birmingham. He set up the Birmingham practise. He does all three RP's but I left it to him to decide what I should have as he is the expert and I am in his hands. I note your comments on bilateral nerve sparing, but my research on this indicated that success is on the surgeons skill - my previous surgeon was only offering me single nerve sparing with wide margins - I wasnt willing to put my faith in that surgeons hands ( and he was going to do keyhole ).

My new surgoen is Alan Doherty

He is very well known around the UK and people on the UK support forums all speak highly of him.

On the positive margin issues this fits in with his categorization of the patient - he has lots of information in this respect and we went through all of this. He is one of the only surgeons in the UK who is using analytics to measure patient outcomes.

Your not the first person I have spoken with who has talked about penile rehabilitation before surgery and meds straight after. I have just had to answer a whole series of questions from his team concerning my abilities in this area and assume when I meet them pre the op on 4th Oct it will be a discussion then.

Thanks for all your advice, its valued.

Eddie

Last edited by moderator2; 09-21-2012 at 05:31 AM. Reason: please do not post a doctor's website, as per the posting rules.

 
Old 10-23-2012, 07:20 AM   #27
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Re: Confused, Anxiety, All so fast - what next? -UPDATE

All

Its been a few weeks since I have posted on the board so I thought I would give you all an update.

I went into hospital on 9th October and went into theatre at 08:15am for my Open Radical Prostatectomy and was I believe in intensive care by 11:30am. I woke up shortly after midday on the same day.

Spent a day and a half in intensive care being monitored and was then taken to a private ward. The operation was according to the surgeon successful and he did bilateral nerve sparing and saved both nerve bundles. I did lose nearly a litre and a half of blood during the operation but didnt need a transfusion.

Pain relief was great, I had an epidural as well as IV and tablets.
Came off epidural day 3 in afternoon and took my first steps along the hospital corridoor that day. Day 4 I was wlaking up and down the staircase.

Problems with constipation kept me in for 6 days but the medical team sorted it out.

I have been home just over a week. Am walking up and down the lane each day and doing physio and Pelvic exercises. Have stress continence that I am sorting but which I am managing with one pad a day.

I can achieve a semi erection and dry orgasm - not yet on any medication.

I go back to the hospital for my first outpatients and histology report on friday.

Havent worked out when to go back to work yet, still have lots of internal soreness and tightening of muscles when I exercise or do any stretching. Also as I do long distance ( 4 hours ) driving to get to my place of work and spend lots of time in hotels living away, I want to be spot on before going back to work.

Best regards everyone and thanks for helping me get through this.

Eddie

 
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Old 10-23-2012, 10:46 AM   #28
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Re: Confused, Anxiety, All so fast - what next?

Just curious Eddie; did the Drs recommend any lifestyle changes?

 
Old 10-23-2012, 01:27 PM   #29
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Re: Confused, Anxiety, All so fast - what next?

No none.
I am an IT worker, high stress and travel a lot, but I do voluntary work for the UK Scout Association and take youth mountaineering so I am pretty fit. Also I dont smoke and hardly drink. I had already started to look at my diet.

I am seeing the consultant friday so if there are any recommendations I will post them.

regards

Eddie

 
Old 10-25-2012, 05:15 AM   #30
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Re: Confused, Anxiety, All so fast - what next?

Eddie, Thank you for keeping us posted on your treatment dicision, how your surgery went and your healing prosess. I am sure this whole cancer thing is behind you and hope over time it will only be a memory. Please keep us posted on how you are doing going forward.

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