Men over 50, please read at least the first message - Prostate Cancer Testing

[D860 VICTORIOUS]

I began experiencing difficulties in the " waterworks" area last Autumn.Like a lot of blokes who just about never have cause to see a doctor,I let it ride for a while.Advice from friends was to get checked out,and via a blood test my GP found my PSA index was over 7,she informed me they like it to be below 3.She referred me for an urgent MRI,which took many weeks to schedule,not helped by being summoned for Jury Service while waiting!

To my huge relief,no visible signs of cancer were detected,but I was told that further tests would be necessary to investigate the high index figure.

I know it's the way of the world nowadays,but I've yet to be seen by the Urology Clinic.I have made several phone calls,and was told I was on the list to be seen in May,that was cancelled and no date could be given for when I could have an appointment.My GP and Surgery staff have been really helpful,my GP gave me some meds to try a few weeks back but the side effects were unpleasant and impacted on my ability to work,so on medical advice I stopped them.She then offered another medication option which would take three months at the very minimum before any conclusions could be drawn,I decided against this.In the meantime my GP is trying to chivvy the clinic along.

I've recently reached 64,and have been extremely fortunate to have had good health throughout,and have barely taken any medication in my life.As detailed by some of the previous posts,I have the usual waterworks issues associated with the prostate arena,which can make life awkward/embarrasing at times.

So,rather reluctantly,I have contacted my Private Health Insurance provider,who have said they can certainly help with an initial consultation and further tests,a positive step forward.For me,as well as the physical aspect of this condition,it's affecting me psychologically too.

Best wishes to all of you who are dealing with this condition,

Neil.

[BR traction instructor]

Just back from having my PSA bloods taken. The nurse was keen to ask why I had attended and ran through the list of symptoms that might alert them. Apparently, I had none other the urging of my girlfriend to go and get checked cos she had seen drops of wee on the toilet seat too often. Cycling or other forms of exertion can give a raised PSA apparently (I cycled twenty miles yesterday evening), so this is clearly less than an exact science. On the other hand a genuine raised PSA can occur with no symptoms.

 

Two days to wait for the results.

 

BeRTIe

[PaulCheffus]

On 17/06/2023 at 04:31, BR traction instructor said:

I spoke with my doctor's surgery in Silloth re a PSA test (I am 57) yesterday and as a result, now have an appointment with the nurse on Tuesday next for same (blood sample required apparently). No quibble and exactly the service that I would hope for with the NHS.

 

BeRTIe

Hi

 

I had mine done last week partly because of this thread and partly the constant adverts on TV / Radio,it was like the universe was trying to tell me something. Luckily for me the test was negative.

 

Cheers

 

Paul

[08221]

Well done to those who contribute to this thread - you encouraged me to get a test last Thursday so thank you!

 

I fell into the same trap as @BR traction instructor - I cycled to the test centre (local Lions had arranged them in a tent in a local park) and walked in with my cycle helmet in hand. Immediately met with an "oh have you cycled here" along with an explanation it could increase the test score.

 

Went ahead anyway and got the result back on Friday (how efficient!), score was well under 3 so even the cycling meant I am OK for now. 

 

Will watch out for testing sessions annually from now on and make this a regular thing.

 

Manchester University were also onsite looking for volunteers for a 6 month cancer research project so I signed up there and then to take part - its the least we can do to help others 🙂

[Ian Morgan]

So, the biopsy samples are analysed by looking at the shape and size of the cells. Each sample is given a score between 1 and 5. Scores of 1 and 2 mean there is no cancer, 3 to 5 mean cancer, the higher the number meaning the greater the risk of growth and spreading.

 

There are two numbers, called the Gleason Grade. First is the score that most of the cells have been alloted, the second is the highest score of the other cells. My score was 4/3. Not the worst, but also not the lowest cancer result of 3/1.

 

Cancer cells were found in almost two thirds of the prostate, but more worryingly, some were found near the periphery of the prostate, where they could spread to other organs.

 

So, the next step will be a full PET scan, involving injected radioactive tracers, to see if the cancer has spread beyond the prostate. This should be done in the next couple of weeks at another hospital further away.

 

Depending on the results of this scan, the recommended treatment will probably be the complete removal of the prostate. More on that if/when the time comes.

 

I am not looking for sympathy or best wishes, I am just wanting to record what is happening to me so others can understand, and possibly come to terms with, what may happen to them some day. Again, I am not medically trained, so please search further for proper medical advice if you need it.

 

[davknigh]

FWIW a Gleason of 7 (4+3) was what I got that triggered my treatment.  Your treatment depends in part on your age, the older you are the less likely you will have surgery and more likely to have chemo or radiation. Being over 70 with tests showing the cancer was confined to the prostate I got radiation but that’s what it’s done here in Canada, I’m in the dark as to what the NHS does. Radiation over here is much more focused that it was even ten years ago so less damage and fewer side effects. Best of luck 👍

 

Cheers,

 

David

[Ian Morgan]

1 hour ago, davknigh said:

FWIW a Gleason of 7 (4+3) was what I got that triggered my treatment.  Your treatment depends in part on your age, the older you are the less likely you will have surgery and more likely to have chemo or radiation. Being over 70 with tests showing the cancer was confined to the prostate I got radiation but that’s what it’s done here in Canada, I’m in the dark as to what the NHS does. Radiation over here is much more focused that it was even ten years ago so less damage and fewer side effects. Best of luck 👍

 

Yes, there are various treatments and combinations, each with its own success rate and possible detrimental side effects. External radiotherapy, internal radiotherapy (Brachytherapy), ultrasound (HIFU), cryotherapy, hormone therapy, chemotherapy and others. This choice will be narrowed down following the PET scan.

 

I am 67, and my consultant seems to think removal will be best for me.

 

 

[big jim]

I’ve not had a PSA test but have had ‘the finger’ which didn’t reveal any issues, im only 48 and I had that done a few years back after I was having a bit of trouble with the old water and sewage works, turned out I was just plain unhealthy, overweight and eating and drinking badly!

 

my dad had prostate cancer a few years back but got cured of it and has been clear since thankfully, that was revealed with a PSA test, I think he had the ultrasound treatment to get rid of it 

 

Also as an aside I’m doing another cycling challenge in august to raise money for prostate cancer UK like I did last year, not being as ambitious this year just a 100 mile ride this time, I’ll no doubt add my go fund me page to the cycling thread once I’ve done my other charity ride next week! 

[SteveyDee68]

2 hours ago, Ian Morgan said:

I am not looking for sympathy or best wishes

Sending best wishes nevertheless - and thanking you for making me think about getting a test done (nearly five years on now from my 50 years “MOT”!)

 

Steve S

Edited June 22, 2023 by SteveyDee68

[BR traction instructor]

I've just phoned for my PSA result and been advised that it is 0.65 normal, no action required.

 

BeRTIe

[D860 VICTORIOUS]

A few weeks back,I was informed by the Urology Clinic that a Consultant did want to see me,but that would not be possible until the end of this year/beginning of next.The nurse I spoke to was extremely polite and apologetic,but long waits are how things are.

I'd contacted my Private provider who said they could likely help,and that's exactly what's happened.

I had an initial consultation last Monday,at which I was listened to and given careful explanations of the way forward.

I wasn't keen at first,but I've now started on medication which has the aim of shrinking the Prostate.This will take some while to demonstrate any effect,but I've also been informed that surgery is going to be a likely outcome.

At least I now have some progress,though discomfort will persist for a while yet.

On reading the fact sheet I was given,I was surprised to see how prevalent Prostate Cancer and related problems are.I suppose in an ideal world the NHS could give men of,say,fifty or over,some form of regular check,but I'd say that's not realistic right now.

To reiterate what's been said before in this thread,if you're at all concerned that this problem may be affecting you,get checked out!!

[Ian Morgan]

So, they have had their 'Multi-Discipline Team' meeting to discuss the findings of my PET scan, and I have now seen my consultant to hear the result.

 

Good news is that all my other organs, including lymph nodes which is really important, are clear of any signs of cancer. Bad news is a small mark on my pelvis which may, or may not, be cancer.

 

This changes the recommended treatment. Removal of the prostate could trigger any other cancer to become aggresive. Instead, the treatment plan is to be a combination of hormone therapy and radio therapy to remove the cancer from the prostate and the pelvis at the same time.

 

The hormone therapy is intended to bring on the 'male menopuse' and stop me producing testosterone. The prostate cancer feeds on testosterone, so this should inhibit further growth while the radio therapy kills it off. The hormone therapy starts with 4 weeks of daily tablets to get my body used to things, then regular injections by my GP into my abdomen of 'slow release' stronger capsules. This could continue for some months after the radio therapy is completed. There are risks and side-effects of the hormone therapy, including mental and physical tiredness, susceptability of the skin to sunshine and ultra-violet, man-boobs, mood swings, weight gain, etc, but the range and severity of these effects varies widely from patient to patient.

 

Radio therapy can begin about 3 months after the start of the hormone treatment. It involves a trip to a hospital 40 miles away, 5 days a week for up to seven and a half weeks. The actual therapy only takes 20 minutes, and is quite painless, but beforehand, the bowel must be empty (enema) and the bladder should be full, to keep it out of the way of the prostate. It could be a tiring process on top of any side effects of the hormone therapy. They will also tattoo some dots around my abdomen to help them position me accurately for the machine each day. Tattoos, at my age, really.

 

So, as always, the above is just my understanding of what is going to happen to me, and why. I still have to see the Radio Therapy Oncologist who will carry out the procedure, so things could still change. Meanwhile, I have to take my second tablet now.

 

Still feeling fit as a fiddle, which is the annoying thing. You expect to feel ill, go to hospital and come out feeling better, not the other way round.

 

 

[SRman]

Further to my tests and biopsy, while I am still just a little sore and recovering from the procedure, the results came back as "benign", which is a huge relief for me. The doctor also told me to get another blood test in six months time and gave me the piece of paper authorising that. She said that the elevated PSA readings could have been caused by an infection or inflammation.

It means also that I can now start planning things ahead instead of holding fire in case the system suddenly pops an unexpected appointment on me.

I sincerely hope all the other men on here get equally promising results.

[Chris M]

7 hours ago, Ian Morgan said:

So, they have had their 'Multi-Discipline Team' meeting to discuss the findings of my PET scan, and I have now seen my consultant to hear the result.

 

Good news is that all my other organs, including lymph nodes which is really important, are clear of any signs of cancer. Bad news is a small mark on my pelvis which may, or may not, be cancer.

 

This changes the recommended treatment. Removal of the prostate could trigger any other cancer to become aggresive. Instead, the treatment plan is to be a combination of hormone therapy and radio therapy to remove the cancer from the prostate and the pelvis at the same time.

 

The hormone therapy is intended to bring on the 'male menopuse' and stop me producing testosterone. The prostate cancer feeds on testosterone, so this should inhibit further growth while the radio therapy kills it off. The hormone therapy starts with 4 weeks of daily tablets to get my body used to things, then regular injections by my GP into my abdomen of 'slow release' stronger capsules. This could continue for some months after the radio therapy is completed. There are risks and side-effects of the hormone therapy, including mental and physical tiredness, susceptability of the skin to sunshine and ultra-violet, man-boobs, mood swings, weight gain, etc, but the range and severity of these effects varies widely from patient to patient.

 

Radio therapy can begin about 3 months after the start of the hormone treatment. It involves a trip to a hospital 40 miles away, 5 days a week for up to seven and a half weeks. The actual therapy only takes 20 minutes, and is quite painless, but beforehand, the bowel must be empty (enema) and the bladder should be full, to keep it out of the way of the prostate. It could be a tiring process on top of any side effects of the hormone therapy. They will also tattoo some dots around my abdomen to help them position me accurately for the machine each day. Tattoos, at my age, really.

 

So, as always, the above is just my understanding of what is going to happen to me, and why. I still have to see the Radio Therapy Oncologist who will carry out the procedure, so things could still change. Meanwhile, I have to take my second tablet now.

 

Still feeling fit as a fiddle, which is the annoying thing. You expect to feel ill, go to hospital and come out feeling better, not the other way round.

 

 

Been there with the hormone therapy. Its fair to say that everyone is affected differently but it is good to speak with others who have been through it.

 

This is my experience. The tablets didn't do too much and I thought "this will be ok" . The injections are much harsher. The effects creep up on you slowly as the testosterone reduces. I didn't get mood swings. I did find it harder to concentrate and found my mind would wander very easily including when driving. I did get a sudden harsh tiredness, this can just come on with no warning and I just had to stop whatever I was doing and take a nap. Its all a bit like getting older I guess. I found it was easy to do sit down and nothing which in one way was good during the lockdowns but is really a very bad thing and  something that needs to be fought. I ended up building a new layout and cycling whenever I could which helped a lot.  I got hot flushes, especially in the night, but got no sympathy from the wife or any other women over a certain age. I also found that I suddenly had to go for a wee about three times a night whereas before treatment I almost never had to. Possibly the most concerning side effect is that, whilst I still find young ladies attractive, I can't remember why. I also found my muscles became weaker, especially noticeable in my legs when walking along up a gentle slope - it was much harder work than it used to be. On the plus side I did seem to get some lovely thick hair!  I was on the stomach implants for three years. It is now 16 months since my treatment was completed and I am not fully recovered from these side effects. As testosterone slowly returns the side effects are slowly going. I'm not moaning or complaining about these side effects, just stating what happened to me. The all important up side is that my PSA tests are still showing as effectively zero. The treatment has been an important part of saving my life. An odd thing about this treatment is that you from the outside you look and sound the same as ever and you can do anything you want but your friends and family have to accept that you are not quite the person you were. I was able to take my new layout to a number of exhibitions while having this treatment so it didn't stop me doing anything important! Everything will come back though (I hope!).

 

I found the radiotherapy OK. Getting into the stride of full bladder and empty bowel takes a few days to sort. The full bladder can be an issue because sometimes the radiotherapy is delayed by 10-15 minutes and than can be crucial. I found I had to go for a wee immediately after radiotherapy. Hospital to home was only a 15 minute drive for me but I was absolutely desperate again by the time I got home. In your case I would take an empty bottle with you as you will almost certainly need it on the way home.

 

I hope this helps, the treatment is really not too bad overall and it has had a good outcome for me and others that I know. The most important thing is not to let it get you down and keep a positive attitude. I found National Trust membership useful; it works as a sort of gym membership for wrinklies. I am also going to do the cycle 100 for Prostate Cancer UK although I might be considered a cheat by some as I will be using my ebike.

 

Edited July 24, 2023 by Chris M

[Ian Morgan]

I just realised I did not talk about my experience of having a PSMA PET scan, so here it is.

 

Actually, very little to say. There are various types of PET scan, the PSMA being the type of 'tracer' administered, different tracers to show up different things. The PSMA (prostate-specific membrane antigen) tracer is a sugar base that sticks to cancer cells, but carries a radioactive substance that emits positrons. When these positrons hit another substance, photons are produced, which are detected by either a CT or an MRI scanner. You just lie on the bench for half an hour while you are scanned. However, it takes an hour for the injected tracer to circulate round your body and attach itself to cancer cells first. Add to this the long wait for the tracer to get to the hospital from where it is prepared, and I was there most of the day. The radiation in the tracer has a very short half life, so it has to be prepared and distributed quickly. Mine had to travel down from the midlands.

 

You are still slightly radio-active for several hours after the scan, so you are warned to avoid pregnant women and small children. By the next day, you should no longer be above the level of normal background radiation.

 

So, apart from the injection, no pain or discomfort, just boredom.

 

Oh, and no food or drink beforehand, so with the extra delay, I was starving afterwards.

 

 

Edited July 25, 2023 by Ian Morgan

[Ian Morgan]

Two weeks into my hormone therapy tablets, and two more weeks to go. I have not noticed any of the possible side effects yet, but the injections may have more pronounced effects, hot flushes being the most likely. I was advised to start taking Evening Primrose Oil tablets to mitigate any effects, so I have been taking them daily too.

 

I have just had my first injection, into one side of my stomach area. It was a liquid injection rather than the capsule. The capsule is probably more uncomfortable wheareas the liquid injection can result in a lump for a few days. They have opted for 3 monthly injections instead of the monthly injection option. The injection was similar in pain level to an injection in the arm, but it is now stinging like a wasp sting.

 

Anyway, seeing the new Oncology Consultant Thursday week to discuss the radiotherapy, so next update after that.

 

 

[melmerby]

Today on the BBC news it has been revealed that Nick Owen (former Good Morning Britain & current Midlands Today presenter) has had prostate cancer.

He had no symptons but had a routine PSA test that came out on the high side.

His GP decided to refer him for a biopsy which came back positive so has had surgery to remove the prostate.

It seems to have been caught it in time as post operative tests show no further cancers.

 

As you see it can happen to anyone, out of the blue.

[melmerby]

On 24/07/2023 at 01:20, SRman said:

She said that the elevated PSA readings could have been caused by an infection or inflammation.

Or are just high, like mine have been for at least 20+ years.

Usually around 6 or so (over the 5 threshold for further investigation.)

I had a biopsy some years ago (negative) and had a scan at the end of last year (again nothing to see)

I have the PSA test every 6 months, a steady rise above my "norm" will trigger further investigation.

[Izzy]

 

A high PSA can be the result of urine retention caused by the prostrate squezzing the water pipe which is why you can't empty your bladder properly and need to go more frequently. This can also cause UTI's, which in men are serious as it can easily and quickly back-up into the kidneys causing sepsis. It's another reason to get a PSA check if you have any issues.

 

When my PSA gave a result of 14 I was put on a fast track system by my local NHS trust, had a MRI in 3 days and saw a consultant in 7 days, on a Sunday! Luckily for me tests showed I had benign prostrate enlargement (BHP), was seen 3 monthly over the next year by which time my PSA had risen to 20. I was put on medication to relive the pressure after a further MRI and given the further option of laser surgery, which I took, but involved a 18 month wait - this was just as Covid arrived. This surgery basically 'bores out' the water pipe and now, 18 months after that I am pretty much back to normal. But regular PSA tests are now the norm to ensure I stay that way.

 

I am always thinking of those, including some I have worked with over the years, who have not been so fortunate and so add my advice to anyone to make sure you get a PSA test.

 

Bob

[davknigh]

High PSA can also be a result of being tested within 48 hours of having had intercourse or even a bike ride so should you be on the high normal side it pays to avoid either activity before your test or at least let your urologist know what you’ve been up to to avoid an unnecessary biopsy.

 

Cheers,

 

David

[Ian Morgan]

I had my consultation with the Oncologist. She was not convinced the trace found on the pelvic bone was of concern. If it was just the prostate affected, it would be possible to be treated by a new machine in London that combined MRI and radio-therapy with extra accuracy and safety. This allows higher dosages to be administered, shortening the procedure to just 5 daily treatments.

 

However, because of the uncertainty, she went back to the Multi-Discipline Team for a third opinion. They found the same trace on the pelvic bone on my initial MRI scan so, although they do not know what it is, they have to treat it, meaning I have to have the 'normal' radiotherapy.

 

Before that, the hormone therapy will increase, requiring blood tests every 4 weeks and extra-strength tablets in addition to the 3 monthly injections. After 6 months of this, another scan will determine if I am ready for the radiotherapy. I have been warned to expect more severe side effects, including forgetfulness. However, I have still not noticed any yet from the injection.

 

So, the saga continues, and extends. 

[Chris M]

The effect of the injections builds over about 6 months and takes a lot longer to fade away.

 

I hope its ok to say this here but I have just completed 100 miles in August "cycle the month" to raise funds for Prostate Cancer UK. If anyone feels like making a donation the link is https://cyclethemonth.prostatecanceruk.org/fundraising/chriss-cycle-the-month-august-2023

Edited August 23, 2023 by Chris M

[40F]

After 7 hours in A&E last night going there for an examination as a result of an infection not responding to antibiotics, The result being tests at  the urology center. GET IT DONE

 

It could be a bad infection BUT at least my infection was found and the wheels set in motion  

[VIA185]

About 18 months ago I was diagnosed  with T2 prostate cancer after having my PSA monitored over some years. The process of diagnosis was, for me, the worst part. After an introductory examination at a Fast-track prostate clinic at hospital No. 1. I had an MRI scan at hospital No. 2 which was inconclusive, followed by a biopsy (which is a very unpleasant procedure) performed in a dump of a room in a RAAC hospital (hospital no. 3) . The real low point was being given the (T2) diagnosis late in the evening on a dark autumn day (hospital 1 again) and having a 40-minute drive home . T2 is not life threatening and is treatable but receiving the news is still a serious blow. However, from that point I was under a consultant at my local city hospital (hospital No. 2). I was given a hormone  injection once every 3 months for a year. I was then told by the Consultant, "We can cure this." Despite my dread of hospitals (since a two-week incarceration at age 5) I would have been a fool to say 'No thanks.' I am currently approaching the end of 20 consecutive weekdays of radiotherapy. The worst part of this is having to drink 3 cups of water and fill one's bladder beforehand. It's OK if they run to time but gets very uncomfortable if they run more than 5 minutes late. The radiotherapy involves positioning me in EXACTLY the same position every time ( the final part of the positioning involves shifting me 2mm to my right - it's that precise!). There can be side effects to the radiotherapy affecting one's bodily functions but, so far, I've coped OK. The radiotherapy technology is amazing and utterly fascinating - computer-operated and, so far, entirely by some very caring, charming and delightful young women. There are a number of short films showing the radiotherapy machines - go on Youtube and search Varian Truebeam. I drive myself the 30-minute journey to and from the hospital. The effects of a year of receiving  an artificial female hormone are somewhat worse than the radiotherapy, resulting in some self-identity issues and a tendency to emotional melt-downs. I'm told these will subside after the treatment ends - ie, by Christmas. I hope that by being frank about this treatment more men will be encouraged to get an early check-up as, caught early, it is curable. (CHRIS LEIGH)

[davknigh]

My experience of radiotherapy was exactly like your’s, very caring and sensitive staff who used the three dot tattoos to line me up each time on the laser guidelines. The water was the worst part for me with a small bladder and an enlarged prostate but it’s done and my PSA is down to .69 from a high of 11 before all the fun began.

 

Best of luck with the rest .

 

Cheers,

 

David