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Prostate Cancer Network
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Hello

Well I’ve had an interesting introduction as Opaque and Opaque 1

Tried to cancel ine and ended up with none

So going to try one last time and then I’m giving up. So it’s hello everyone from Sharprick.

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Hello Sharprick. What is your situation? Diagnosed with PC? How old are you? Gleason score? PSA?

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I’m 65 diagnosed March 16 with Gleason 3+4 psa 7.4 T2b

Radical Prostatectomy Bournemouth Hospital in April following pathology Gleason 4+3 T2c 0.01

Salvage radiation June 17 psastayed .05 until this October when went to .09. Now panicking

Hope to have a psma scan in the new year but onco now tells me I’m incurable.

What about you?

Dai

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Hi Dai

I am way behind you in respect of RP diagnosis and treatment. I am also in UK (West Scotland) and currently in the hands of the NHS..., however, many (most) contributors to this site are from the USA. I have found over the past few months that there is a plethora of good sound and undeniably very useful information regarding PC on this forum. Your own experience will no doubt assist others as well, as there are new members joining regularly who can benefit from the experience of those who have traveled this rout in the past.

From my perspective I found out earlier this week that RP is out for me as a treatment. My PSA is 30+ and has been rising since my first GP visit last April. My cancer team advised me that the lesion had broached the prostate capsule but thankfully does not appear to have reached the Lymph Nodes yet. So my route is NADT then EBRT. I have my next meeting with the cancer nurse on 5th Dec, where I will be updated with the results of this weeks x-ray - old spin injury that they are concerned about, and how high my PSA has climbed in the past couple of months.

Onward and upwards....

StuartS

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Why is RP out of the question? Personal preference? I would think in your case it would be the best choice. I see so many responses from people who have such long-lasting postop side effects from brachytherapy and other radiation. With RP (DaVinci) you will get ED and some incontinence, but both can improve over time, and I rarely hear about other longterm side effects from RALP when done by a competent surgeon. My opinion is that RP gets rid of the prostate, and you get a more accurate staging. It is very common to see preop Gleason 3+4 go to 4+3 postop. That is a big difference. Just my opinion. Best wishes to a Scot. My ancestors were Sinclairs/St Clairs in Caithness. I'm American.

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You have to understand that in the UK, they have nationalized health care called the NHS. Prostate Cancer treatment (or any cancer treatment) is up to a panel of experts (what some smart asses called "death panels" when this subject came up years ago in the US). They do not leave it to the poor sucker who has just been diagnosed and know absolutely nothing about PC and how to treat it. Yes, we have the wonderful system where the person who knows the least gets to make a decision on how to treat his cancer. Not exactly the sanest approach, but it is the one we have.

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Thank you, David1958. I am well aware of the NHS and fervently hope that we can get something even half as good in the US. With our federal system of different state, county, local, and federal governments, it is a challenge. I should hope that the "poor sucker" who knows the least will take ownership of his healthcare and do due diligence in determing his course of treatment and the appropriate healthcare team. I did the work involved to get the best treatment for me. After all, nobody is as concerned about his health as much as the person himself.

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I agree with you Jeff85705. You have to admit that it is a very steep learning curve and sometimes, time is of the essense. I too wish for something like the NHS, or just Medicare for all. In the meantime, we make do with what we have, drinking information out of a fire hose. Yes, the individual has the most at stake in whatever decision making is made. It is similar to the idea that all the pilots in the airplane are dead, there are no other pilots onboard, and you have been selected to get the airplane safely on the ground, better get up to speed quick!

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That's a good point, David1958. A steep learning curve and time being of the essence in aggressive or late-diagnosed cancer. I'm not sure the NHS method of pretty much telling you what is best in your case is the best way to go (their panels of experts). There are advantages to the American version, which is basically that you are responsible for your health. I worked in the medical field (hospital) for most of my career, and that was the direction: patient bill of rights and taking ownership of your health. Maybe the "expert panels" show the "nanny" aspect of the NHS?

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Surgeon on the team considers that PSA level indicates RP would not be fully successful. Route strongly recommend by team is NADT and EBRT. Decision date is 5 Dec and unless I can be convinced otherwise..., that will be the route decided. FYI I am of the Dewar clan..., born and spent my informative years in Edinburgh now residing in West Scotland.

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Hi Stuart S

I am no expert but have done hundreds of hours research and do not regard myself as unable in terms of understanding

Although your cancer is obviously spreading it looks as if you would benefit from the op and possible follow up HT then rads

Possible that way round not so easy after primary radiation

I think its always worth a second opinion

Changing the subject its great to meet our American cousins but need to talk to British men as our medical system is so different to theirs and so need advice on dealing with the NHS and Bupa for those who have it

Also I am interested in finding the best uk oncologists and centres of excellence and have no problem with travelling.

One if the reasons I have had my salvage so early was that I am in Bupa and they approved it

I am hoping to get a PSMA scan in January so they can find any hot spots and treat them

Whatever happens I have the feeling that I am here for the duration

I would like another twenty years of quality life ......... please

Dai

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DAI, are you sure you're not off by a decimal for PSA? Isn't anything under 0.1 PSA considered undetectable/negligible? Also, is it normal to so salvage radiation with Gleason 4+3? Were your margins clear? Am I missing something?

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Hi jimbay

No my decimals are right

When I went up to .03 my onco said I had movement and the earlier the better

Unfortunately as I have now gone from .05 to .09 in three months so I guess I’m back on the journey Thanks for asking. Dai

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Even my Urologist here in the US said any increase of 0.02 and above was reason enough for intervention.

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Thanks. That's why this group is so valuable. I learn important, like life-saving level important, things all the time.

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Hi Sharprick

What is your PC situation thus far? Once known I am sure you will receive many supporting responses to your PC quiries.

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Hi Stuart see my history plus response to David 1958.

I’m very new to all this but look forward to getting and giving support

Not a club I wanted to be in but .......

Best Wishes Dai

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Hello Dai. I read your numbers and am sad to say, 'Welcome to The Reluctant Brotherhood'. None of us want to be here, but here we are. Your numbers indicate an intermediate level of cancer. You didn't mention the margins the pathologist found from your RP or if they think it has spread. My doctor never used the words 'I can cure you'. The discussion revolved around managing the disease to minimize the impact on my life. Cure is not a word that can be used a lot with our disease. There are cases, but one never knows. Additional scans and test are needed to determine where your treatment needs to be directed next and which treatment can provide the best results. If your doctor has 'written' you off as a lost cause, I would really consider getting another doctor. Cancer impacts all us in different ways. I was diagnosed by a urologist that was not that familiar with prostate cancer. After the dx, I got a new urologist that specialized in prostate cancer. It is way too early to give up. As has been said many times in history 'I have just begun to fight'. I know you wanted a doctor to tell you that 'We are finished with treatment and you don't have cancer any more'. I am sad to say, I don't think I will ever hear those words either. I still wake up and carry on and so will you. But it sounds a little like you need better medical advice and a more positive outlook from your medical team.

I am with an on line support group that has men that were treated almost 20 years ago. They still test and watch never knowing if it will return. Information is power and will always help.

Rich J

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Sharprick, I live in the US and I was 52 when I was diagnosed. My journey started when some urinary problems got my attention. I had frequency problems where I was waking up at night many times (sometimes 4 or 5 times) to go to the bathroom. I had urgency problems where it was so acute, I thought I would never make it to the bathroom in time. After about six months of dealing with this, I told my doctor (primary care) about it. He recommended seeing a Urologist and he supplied me with the name of one. In January 2011, the Urologist ordered a PSA test. It came back at 5. Then he did a digital and felt something he did not like (something firm, not pliable). Next came a biopsy. Gleason score of (3+4)=7. When he told me he felt something firm he did not like, I kind of knew where this was going. When the results came in he called me into his office. Here in the US we are all like a deer in the headlights when we hear the words" You have cancer". He gave me all sorts of publications on how to treat PC. I already knew what I wanted to do. I read everything he gave me and then told him I wanted RP. That happened in June 2011. Ever since my PSA has been "negligable". No radiation follow up. No other follow up treatments. The ED has been permanent. I have tried everything under the sun to cure my ED. The pump was the best, the pills were problematic, and the trimix shots were the worst. However, I am 7 years post op and still cancer free!

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Hi David

Well I am younger at 65 and really lucky ED wise as I recovered in about 8 weeks However not so lucky in as much as my psa continues to rise

Will just have to conquer my fear and fight on

Dai

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