Monday, 28 February 2011

An Irish victory by 3 points but yes, it was worth being there. Especially meeting up again with Nathalie, Laura P, Ken, Chaz, Catriona, Maggie, Laura H and all the others I can't remember! Beverley's first international and I'm glad she enjoyed it so much, because there's a few coming up over the years :-) I was thinking on Sunday morning that I needed 'hair of the dog', but when I looked in the hotel room bin, I think I'd eaten it the night before!!

Another research paper below regarding PSA...very interesting and food for thought...take a look.....

Rapid Rise in PSA Levels a Poor Predictor of Prostate Cancer: Measuring changes over time leads to unnecessary biopsies, researchers say
Blood tests that indicate prostate-specific antigen (PSA) levels are rising rapidly over time are of little use in detecting aggressive prostate cancer and should not be done, a new study indicates.PSA is a protein produced by cells of the prostate gland. High levels of PSA can be a marker for prostate cancer, although it's far from a perfect screening tool, experts say. Men with both high and low levels of PSA can have cancer or not have cancer.
The thought was that since high PSA levels are correlated with prostate cancer, rapidly rising levels of PSA, called "PSA velocity," from one year to another would also be an indicator of prostate cancer.

However, the new study found that PSA velocity doesn't add any useful information beyond what physicians can already tell from other methods of prostate cancer screening, including the one-time PSA level test and digital rectal exams.

Current screening guidelines that recommend biopsies for men who have high PSA velocity but no other signs of prostate cancer -- such as a suspected abnormality during a digital rectal exam or high PSA level during a single test -- are leading to many unnecessary biopsies, the researchers said.

"We found there was no strong association between PSA velocity and prostate cancer, and virtually none with aggressive prostate cancer," said study author Andrew Vickers, of Memorial Sloan-Kettering Cancer Center in New York City. "The velocity didn't add anything more to detecting aggressive prostate cancers."

The study is published online Feb. 24 in the Journal of the National Cancer Institute.

The whole issue of prostate cancer screening -- including the PSA test, the digital rectal exam and PSA velocity -- has been controversial, said Dr. Otis Brawley, chief medical officer of the American Cancer Society (ACS).

Part of the difficulty is, while current screening methods are good at detecting cancer, they can't distinguish between aggressive, life-threatening prostate cancers and those that are slow-growing and relatively benign. And many prostate cancers are just that -- of little risk to men during their lifetimes, Brawley said.

Current ACS prostate screening cancer guidelines recommend that men make an informed decision with their doctor about whether to be tested for prostate cancer. "Research has not yet proven that the potential benefits of testing outweigh the harms of testing and treatment," according to the ACS.

As for PSA velocity, the ACS doesn't have a position on what PSA velocity warrants a biopsy.

But the National Comprehensive Cancer Network and American Urological Association guidelines do recommend biopsies based on high PSA velocities, even in the absence of an elevated PSA or a suspicious digital rectal exam, according to background information in the study.

And many internal medicine and primary-care doctors, in part because of fears of litigation, do order biopsies based on fast-rising PSA levels, Brawley said.

"It's something that has become almost a community standard. If a guy has a PSA of .8 last year, and a year or so later you've repeated it and it's 1.9, because it has increased by a factor of 1 he gets sent to biopsy," Brawley said.

In the study, researchers used data on more than 5,500 men in their 60s and 70s who took part in a drug trial for a prostate cancer prevention drug. The men in the study were all from the placebo arm, meaning they had not received the drug. As part of the trial, all of the men agreed to have a biopsy at the end of the trial, needed or not.

Researchers did find a statistical association between PSA velocity and the chances of a biopsy coming back cancerous. But when they factored in other things that can influence risk, including a family history of the disease, being older, being black, PSA level and results of a digital rectal exam, there was virtually no association between PSA velocity and biopsy outcome.

"PSA velocity measurement is not useful," Brawley said.

Grace Lu-Yao, a cancer epidemiologist at the Cancer Institute of New Jersey who wrote an accompanying editorial, said she agreed with the authors' conclusions that PSA velocity does not seem to be a good predictor of prostate cancer.

In addition, tracking PSA levels overtime can also cause anxiety to men, who often worry if their PSA level has suddenly shot up.

"According to the data, PSA velocity does not add any value, but it may add more anxiety," Lu-Yao said.

SOURCES: Andrew Vickers, Ph.D., associate attending research methodologist, department of epidemiology & biostatistics, Memorial Sloan-Kettering Cancer Center, New York City; Otis Brawley, M.D., chief medical officer, American Cancer Society; Grace Lu-Yao, Ph.D., M.P.H., cancer epidemiologist, The Cancer Institute of New Jersey; Feb. 24, 2011, Journal of the National Cancer Institute, online 

Friday, 25 February 2011

If you have any questions on Prostate Cancer, Bill Carlin, a Macmillan Cancer Information Nurse Specialist, will be holding a live Q & A session, to kick off PCa awareness month in March.
Had blood sample taken for PSA today. I'll collect the result on a print out at the surgery reception on Wednesday morning. Here's hoping for a little fat '0'. I'm back at Addenbrookes on 11th March and if I get a '0', well, less than .02, then I won't have to go back there again in the near future.

So to take my mind off things, I'm heading up to Murrayfield to watch the Scotland v Ireland International, which Ireland should win convincingly! Come on Ireland!!!

Wednesday, 23 February 2011

Here is a link to the Scottish Prostate Cancer site which is VERY good if you are new to all this.
If you have just been diagnosed, think very carefully before you chose a hospital or surgeon. The outcome of your surgery could depend on it. This Link might help you

Tuesday, 22 February 2011

The Prostate Cancer Charity  

This might be of interest if anyone is interested in regional variation on cancer treatment - the best source for regional comparisons on prostate cancer services would be the National Cancer Patient Experience Survey from 2010, which looks into perceptions of treatment and care by PCT.

Monday, 21 February 2011

Below is an extract from Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer
It is a very useful book, before, during and post treatment; available from Amazon.

PSA Anxiety:
The Downside of Ultra- Sensitive PSA Tests

You've had the radical prostatectomy, but deep down, you're terrified that it didn't work. So here you are, a grown man, living in fear of a simple blood test, scared to death that the PSA- an enzyme made only by prostate cells, but all of your prostate cells are supposed to be gone - will come back. Six months ago, the number was 0.01. This time, it was 0.02. You have PSA anxiety. You are not alone.

This is the bane of the hypersensitive PSA test: Sometimes, there is such a thing as too much information. Daniel W Chan, Ph.D., is professor of pathology, oncology, urology and radiology, and Director of Clinical Chemistry at Hopkins. He is also an internationally recognized authority on biochemical tumor markers such as PSA, and on immunoassay tests such as the PSA test. This is some of what he has to say on the subject of PSA anxiety.

The only thing that really matters, he says, is: "At what PSA levels does the concentration indicate that the patient has had a recurrence of cancer?" For Chan, and the scientists and physicians at Hopkins, the number to take seriously is 0.2 nanograms/milliliter. "That's something we call biochemical recurrence. But even this doesn't mean that a man has symptoms yet. People need to understand that it might take months or even years before there is any clinical physical evidence.

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. "You cannot reliably detect such a small amount as 0.01," he explains. "From day to day, the results could vary -- it could be 0.03, or maybe even 0.05" -- and these "analytical" variations may not mean a thing. "It's important that we don't assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it's less than 0. 1, we assume it's the same as non-detectable, or zero." 

Sunday, 20 February 2011

My daughter Sasha , who lives in London, is going to the hairdressers next week, to have her hair returned to its natural colour. Guess how much? It costs me £7 when I go in Penrith, and it takes around 4 minutes. The guy who cuts my hair is from Iran, and he always remembers that I have a 3 on top and a 2 up the sides. I listen to Iranian pop music as he sheers me like a goat, and then whizzes the cut-throat razor like a helicopter blade around my ears and under my nose. He then blows all the loose hair from my head, and no matter how tight I have my shirt collar, he blows most of it straight into the gap, where it eventually settles in the belt-band of my underpants. He seats the next person as I'm getting my money out, and after checking there is no blood, I pay him. Sasha's hair experience will last 3 hours and cost £250! I could get an ear transplant for that!

If anyone discovers the whereabouts of my other 2 daughters in London, please send them my love and give them my contact details! :-) xxx

The Blog? It's about to become a book! Well that is as soon as I have found out how to achieve that. Having written and kept it it daily since diagnosis, I then slipped into weekly editions. Now, however, the frequency seems to be stretching and I am afraid it will just die one day, without anyone noticing. 

What will I call the book? Beverley suggested 'Prostate Cancer - My Waltz with the Angel of Death!' I like that. Researching how to do all this may take time, so get in touch if you have any previous knowledge of that kind of stuff. I'm told that 'self published books' never go anywhere. Is that true? How do you get a publisher interested? Maybe they won't be!

The British Legion sent me £100 in vouchers to spend at my local Morrison's. Why? Because I am an ex soldier and I had been diagnosed with prostate cancer. Had I asked immediately for help, they would have paid for my travel and accommodation whilst attending Addenbrookes, but they will pay nothing retrospectively. Macmillan said exactly the same. They would have given me £500 if I had asked back in June last year, but nothing now. It's funny because back then, I was only thinking about cancer and if I would live or not, my expenses didn't come to mind! But hey, I'm just glad that things are working out for me just now and that Arsenal managed to beat Barcelona!

I have written to Helen Kelly today (Local hospital trust), asking when the enquiry there will be concluded. She was great when she came to our support group meeting a few weeks ago, even though she had a tough time from the audience. Unfortunately, being diagnosed with Prostate Cancer and living in Cumbria is still not a good idea. You have to head south if you want a chance of success. There are exceptions and there was just one at our meeting that evening, who was full of praise for the local hospital. The majority were very critical of the administrative set up, and communication with patients.

The thing that has made me more annoyed than anything over the past year, is how some Doctors and Consultants locally, just because they have that title, seem to think they are some irreproachable gods, aggrieved that they have to breathe the same air as us. If we speak and they don't agree, then we are wrong; that is their thinking!

This is a copy of a letter that I sent to my doctors practice last week.

18th February 2011
Dear Anne,
Thank you for answering my question in your letter of 9th February.
Having now corresponded extensively with the Cumberland Infirmary, where an enquiry is due to report back later this month, I have now come to a conclusion, and one which I would like you to share with the doctors at the Birbeck Medical Practice in Penrith.

From diagnosis on 18th June 2010 and until recently, the hospital has always assumed that my doctors had kept me informed of what was happening to me. In turn, my doctors had always assumed that the hospital was keeping me informed. In reality, I was not being kept informed adequately by either!

Any information that I received, by letter, at the surgery or by phone, was always instigated by myself and with often having to ‘badger’ for this information. Nobody was looking after my case, looking at my files to check where I was up to and how I was doing. I was just floating through a system, in charge of my own progress. This left me in a terrible state of anxiety for long periods of time. I suppose it comes mainly from having a modern practice, where a patient doesn’t have a dedicated doctor anymore. We all see a different practitioner every time, so no doctor feels that intimate responsibility for his or her patient.  A pool of doctors, looking after a sea of people!

As I said from the outset, my intention was not to get anything out of this, other than to make doctors and hospitals realise that their systems do have faults, and we the patient, are not always wrong when trying to highlight these.

Yours Sincerely

Daniel Sencier.

Tuesday, 15 February 2011

This is my Interview on BBC Radio Cumbria, 11th February 2011. I had already read excerpts from my Blog in the morning and evening, Monday to Friday. When I listened back to this myself, I couldn't believe how 'down' I sounded! But then this was really the first time anyone had asked me to revisit the last 9 months and talk about my feelings. So at the same time as I was answering Tim, I was remembering just how bad I felt at the various stages. I have also found it hard to come to terms with possibly being cured, because there are so many people who I know personally now, who have not been as lucky. I feel guilty but happy! Can you understand that? But this was all about trying to get a message out to other men in Cumbria, and I feel that this was achieved. A BIG thank you to my friend Chaz for showing me how to put sound clips on here, it was not as easy as I thought it might be. See you in Edinburgh for the big game my friend!

Saturday, 5 February 2011

When I went out this morning to post my brother Paul's birthday card, my mind was on other things. As it slipped from my hand, into the letter box, and before the muffled 'clunk', I realised that I had forgot to put the stamp on! Will it get there? Not sure! HAPPY BIRTHDAY PAUL and many more mate!!!

I was thinking of the letter from Addenbrookes, which arrived this morning, because seeing it for the first time, in black & white, I began for the first time to realise just how lucky I had been. I have copied it in below.............

Oh but before I forget, this is why I live in Cumbria ........

Fantastic and I might just frame this. When I was diagnosed on 18th June last year, this would have been the 'dream ticket' that I would have hoped for, and here it was. Better than a letter from your first girl friend, better than receiving your driving test pass certificate or your negative chlamydia result!

Thursday I went to Radio Cumbria to record more excerpts from my Blog. It is going out on 95.6FM, 96.1FM and 104.1FM every day, Monday to Friday next week, at 9.45am and 5.45pm. Then I am interviewed at 1010am on Friday morning. This is great because even if one person decides to have their PSA checked, after hearing me talk about it, then it will have been worth it.

Six Nations Rugby - the first match was last night. England beat Wales in an amazingly aggressive performance. Can't wait to get up to the Scotland v Ireland match later this month and meet up with Chaz again. I know Ireland will win, and the party before will be a riot! I never experience anything like the build up to an International rugby match. It's a day when both sides of supporters sing and dance, joke and drink, without a hint of trouble. Some of my best times ever have been at these games..... 

You know, I used to like Oak trees! Some of my best memories have been either climbing up, falling out of, or laying under them. Not anymore! After doing a 2000 word essay on, 'Identifying species of Oak, using only their leaf characteristics', they don't push my buttons anymore!. Did you know that ....... Q. Robur grows in wetter and more alkaline habitats, whereas Q. Petraea is more drought resistant. (Muir et al., 2000)   Ahhhrrgghhhhh...give me Pine every time!

We are now in the year of 'The Rabbit'! This is very good, because I was not only born in the year of the Metal Rabbit (1951), but 2011 is the first time that the Metal Rabbit has come around again! The next time will be when I am 120 years old, by which time, incontinence will probably be the least of my problems! Think I'll celebrate this year! Have you looked up your Chinese animal and element? You could be a Wooden Ox, a Fire Sheep or a Water Rooster! But could you live with not being something as cool as a 'Metal Rabbit'?

I am also a Sagittarian and proud of it.......
Sagittarius is the sign of the zodiac mainly concerned with philosophy, higher education and global thinking. It is ruled by Jupiter, the planet of expansion, benevolence and luck/fortune. Individuals who have a strong Sagittarian influence are typically interested in expanding their horizons through traveling abroad, learning foreign languages, or immersing themselves in unique cultures. These individuals thrive on higher education; once they find a subject(s) they’re passionate about, they will search relentlessly for more answers and more information to build on what they know. They are also fond of ethics, as it appeals to their philosophical nature and is a subject that is so contextually dependent that they’re skilled at being flexible in applying sound philosophical observations to complex situations.

Because Sagittarius is a mutable sign, they are generally very adaptable philosophically because they seek to understand the world from a higher perspective and are perspicacious in finding higher meanings through their varied encounters. They tend to be optimistic and have a great capacity for faith, as it is this good-natured faith that usually plays into their fortunate endeavors. They are not usually known for their reliability (unless they also have a significant Capricorn influence) because their attentions have a tendency to be scattered.
Sagittarius is a fire sign, which imparts a fiery enthusiasm that shows through their (blunt) sincerity, honest convictions, and drive for independence. They enjoy adventures and are partial to the great outdoors.

Mmmm! Well most of it fits :-)