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jamie2009

Prostate Removal v Radiotherapy for Prostate Cancer.

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My treatment was slightly different. After initial diagnosis by my GP I asked to be referred to a particular Urology surgeon who is the recognised a the leading expert in prostate cancer in the region. He worked out of Manchester Royal Infirmary. After biopsy and CT scan (I'm unable to have MRI scans), the surgeon told me that I was unable to have surgery as the cancer had spread to my seminal vesicles. He then referred me to Christies, where he had previously worked.

 

The consultant oncologist mapped out my treatment which consisted of 18 months of hormone therapy (injections in my abdomen every 3 months) and, 6 months into that treatment, a course of radiotherapy which consisted of 5 sessions per week for 4 weeks.

 

Prior to receiving the injections I was given an experimental treatment, which consisted of a course of hormone tablets which was said to prevent a flare up of the cancer due to the hormone injections. Unfortunately, 10 days into the course of tablets, I had a massive heart attack (I later discovered that the tablets came with a list of contraindications including "may cause heart attacks", cheers for that!).

 

Soon after starting my hormone injections, my PSA dropped to zero, but so did my sex drive!

 

Radiotherapy was quite unpleasant as it caused my haemorrhoids to flare up causing a lot of discomfort and bleeding and I was admitted to Christies as an inpatient for the last 2 weeks of my treatment.

 

After ending the hormone treatment, it took another 6 to 12 months for my libido to return.

 

It's now 10 years since I started my treatment, My PSA is always around 1, latest test came back at 0.65. I have no problems with my waterworks and lead a completely normal live.

 

In summation, it was a struggle for 2 years but well worth it.

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1 hour ago, jamie2009 said:

Cystitis, which kicked in 6 months after treatment,very painful but with watching what I eat, limited my intake of spicy food and  drink, definetly no caffeine drinks, no carbonated drinks, very limited amount of alcohol it has eased up. They recommend you drink litres of water a day but the more I did the more it irritated me took other variants of liquids. 

Ask your specialist about Hiprex (Methenamine) tablets as they have been shown to help relieve cystitis problems, esp where it can be caused by a bacterial flare up in the bladder (for example).

 

Very often the actual cause of cystitis is unknown and new research has suggested that this fairly harmless drug can help. 

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1 minute ago, xylophone said:

Ask your specialist about Hiprex (Methenamine) tablets as they have been shown to help relieve cystitis problems, esp where it can be caused by a bacterial flare up in the bladder (for example).

 

Very often the actual cause of cystitis is unknown and new research has suggested that this fairly harmless drug can help. 

I have/had Radiation Cystitis, it is not a bacterial infection, I had a urine test yesterday and it was clear.

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3 minutes ago, jamie2009 said:

I have/had Radiation Cystitis, it is not a bacterial infection, I had a urine test yesterday and it was clear.

I had "cystitis" about a year after my treatment finished. Was re admitted to hospital under my urology surgeon. Diagnosed Non Specific Urethritis (NSU). Had the full bank of tests but nothing found. Put on a course of Ciprofloxacin which cleared it up in days. Remained on Ciprofloxacin for 3 months which led to me developing Achilles Tendonitis, which took me a couple of years to rid myself of that.

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1 minute ago, Spidey said:

I had "cystitis" about a year after my treatment finished. Was re admitted to hospital under my urology surgeon. Diagnosed Non Specific Urethritis (NSU). Had the full bank of tests but nothing found. Put on a course of Ciprofloxacin which cleared it up in days. Remained on Ciprofloxacin for 3 months which led to me developing Achilles Tendonitis, which took me a couple of years to rid myself of that.

The only treatment mentioned on the The Prostate Cancer UK Website is a Bladder Wash. A liquid is injected through a tube in your penis to the bladder, you hold it for around 40 minutes, this process is repeated weekly I think until the problem eases.

Currently mine has eased significantly hopefully and providing I stay away from caffeine drinks and strong alcohol I am managing,If it kicks in I take Ibuprofen, I did try Paracetamol but that didn’t appear to have any affect.

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6 minutes ago, jamie2009 said:

The only treatment mentioned on the The Prostate Cancer UK Website is a Bladder Wash. A liquid is injected through a tube in your penis to the bladder, you hold it for around 40 minutes, this process is repeated weekly I think until the problem eases.

Currently mine has eased significantly hopefully and providing I stay away from caffeine drinks and strong alcohol I am managing,If it kicks in I take Ibuprofen, I did try Paracetamol but that didn’t appear to have any affect.

I had the bladder wash when first admitted to hospital, involved inserting a triple catheter, which was excruciatingly painful, as my prostate was inflamed and made it worse.

 

I probably had it a lot worse than you as I was on Morphine, 4 hourly.

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1 hour ago, Spidey said:

I had "cystitis" about a year after my treatment finished. Was re admitted to hospital under my urology surgeon. Diagnosed Non Specific Urethritis (NSU). Had the full bank of tests but nothing found. Put on a course of Ciprofloxacin which cleared it up in days. Remained on Ciprofloxacin for 3 months which led to me developing Achilles Tendonitis, which took me a couple of years to rid myself of that.

That's the problem with cystitis, because not enough is known about what causes it, and there is a specialist urologist in London who I've been in contact with who is working on problems caused with cystitis and urethritis and why they seemingly are cleared up, but consistently reappear. This despite tests being done and nothing being found.

 

Through the tests he's done over many years, it has been shown that the common/everyday tests done to detect whether there is an infection or not are woefully inadequate and approximately 50% of the time they are not detailed enough to pick up other bacteria.

 

There is also a condition called "urethral syndrome" by which the urethra is almost constantly in an inflamed state, or at least it feels like it, and this is quite possibly due to either a bacterial infection in the past, an inflammatory reaction to another type of "bacteria" or as a result of damage done as a result of operations and catheters etc.

 

On the subject of ciprofloxacin and all of the family of fluoroquinolones, well I've had three instances of them causing tendon problems, the last one being the adductor longus tendon which rendered me immobile for some time, this as a result of taking the latest one, sitafloxacin.

 

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2 hours ago, jamie2009 said:

I have/had Radiation Cystitis, it is not a bacterial infection, I had a urine test yesterday and it was clear.

As you will see my previous post Jamie, cystitis can be just inflammation caused by something unknown/undetected or it can be caused by a bacteria.

 

The drug I mentioned is often described as a "bladder/urinary disinfectant" and for whatever reason, has helped people with cystitis, even when no bacteria has been detected. In fact for people with frequent cystitis, this drug can be a boon.

 

As I seem to be suffering from some sort of cystitis due to too many catheters/cystoscopies/operations I am in the process of trying to locate the drug here, and I've been told it is only available at hospitals.

 

Also, some research done on the "urethral syndrome" does suggest that anti-inflammatory drugs may be an answer.

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18 minutes ago, xylophone said:

As you will see my previous post Jamie, cystitis can be just inflammation caused by something unknown/undetected or it can be caused by a bacteria.

 

The drug I mentioned is often described as a "bladder/urinary disinfectant" and for whatever reason, has helped people with cystitis, even when no bacteria has been detected. In fact for people with frequent cystitis, this drug can be a boon.

 

As I seem to be suffering from some sort of cystitis due to too many catheters/cystoscopies/operations I am in the process of trying to locate the drug here, and I've been told it is only available at hospitals.

 

Also, some research done on the "urethral syndrome" does suggest that anti-inflammatory drugs may be an answer.

Come on... Jamie had radiation cystitis, exactly within the expected window after SBRT. A well known side effect, so why would you want it to be something else?...

Worries me because I have a very large prostate (100cc) which increase the likelihood of such unfortunate radiotherapy conditions .

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2 hours ago, jamie2009 said:

The only treatment mentioned on the The Prostate Cancer UK Website is a Bladder Wash. A liquid is injected through a tube in your penis to the bladder, you hold it for around 40 minutes, this process is repeated weekly I think until the problem eases.

Currently mine has eased significantly hopefully and providing I stay away from caffeine drinks and strong alcohol I am managing,If it kicks in I take Ibuprofen, I did try Paracetamol but that didn’t appear to have any affect.

There are more treatment options then that look at this link https://www.ncbi.nlm.nih.gov/pubmed/20212517. There are also some drugs that can help. Are you followed in Thailand?

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21 minutes ago, KiChakayan said:

Come on... Jamie had radiation cystitis, exactly within the expected window after SBRT. A well known side effect, so why would you want it to be something else?...

Worries me because I have a very large prostate (100cc) which increase the likelihood of such unfortunate radiotherapy conditions .

All I was doing was quoting some research on cystitis...……...

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