Sebert's story

Sebert was diagnosed with prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. at the age of 69 years. He underwent a radical prostatectomyThe surgical removal of the entire prostate gland., followed by courses of radiotherapy and hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy.

Going to see my doctor

The very first step in my own patient journey was going to see my family doctor. For some months, I had been having episodes of dizziness and light-headedness, almost feeling faint on occasion.

I told my doctor about these 'funny turns'. She thought that I should be referred to a consultant neurologist at the hospital to have this checked out. I also mentioned some pains I had been having in my lower abdomenThe part of the body that contains the stomach, intestines, liver, gallbladder and other organs., so she also thought that we had better do a PSA check. Symptoms and signs

Two days later, the results of the PSA test came back and my doctor thought that it was a bit higher than it should be. She arranged for further tests with another specialist, this time a consultant urologist. I had some private medical cover, so at this point I contacted the insurers and arranged for a private consultation with both the neurologist and the urologist.

The urologist put me through the routine bloodA fluid that transports oxygen and other substances through the body, made up of blood cells suspended in a liquid. and urine checks, and also arranged for me to have a biopsyThe removal of a small sample of cells or tissue so that it may be examined under a microscope. The term may also refer to the tissue sample itself., where a snippet of my prostate was taken from inside

Getting a diagnosis

My appointment with a neurologist came through first, a month after seeing my family doctor. He thought that my episodes of dizziness were more likely to be related to my heart than anything neurological, so he referred me to a cardiologist. However, he arranged for some tests (an EEG and an MRIAn abbreviation for magnetic resonance imaging, a technique for imaging the body that uses electromagnetic waves and a strong magnetic field. scan of the brain) to completely rule out any neurological causes.

Even though I never really experienced any problems with waiting lists on the UK's state health service, I decided to see the cardiologist privately to speed up the process at this stage.

I had my first appointment with the consultant urologist two weeks later. This specialist had been suggested to me by my GP, and my own enquiries revealed him to be an expert at treating prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body.. Fortunately, I was able to see this specialist through my private medical insurance - I know that this is not always possible.

The urologist put me through the routine bloodA fluid that transports oxygen and other substances through the body, made up of blood cells suspended in a liquid. and urine checks, and also arranged for me to have a biopsyThe removal of a small sample of cells or tissue so that it may be examined under a microscope. The term may also refer to the tissue sample itself., where a snippet of my prostate was taken from inside. This happened within a few days and was covered by my private health insurance.

Before the results came back, the urologist arranged for me to have an MRIAn abbreviation for magnetic resonance imaging, a technique for imaging the body that uses electromagnetic waves and a strong magnetic field. scan as well, and this was performed at the local hospital. This expensive test was paid for by my private healthcare policy, although I did have to argue my case to them. Tests and diagnosis

Deciding on the best treatment

Two months after first seeing my family doctor, I was told by my consultant urologist that I had cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. of the prostate. He told me that the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. was inside the glandAn organ with the ability to make and secrete certain fluids. and had not escaped, so my diagnosisThe process of determining which condition a patient may have. was localised prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body.. The biopsyThe removal of a small sample of cells or tissue so that it may be examined under a microscope. The term may also refer to the tissue sample itself. showed a GleasonA system used to assess the extent of abnormality of prostate cancer cells. score of 2 and my PSA level was 16.

As part of my own research, I spoke to family members in the healthcare profession, and read about the experiences of fellow prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. sufferers on websites

At this point, the urologist explained to me that there were various ways of dealing with it and essentially it would be up to me to decide what was to be done. He talked to me about several treatment options, including radical surgery, radiotherapy and something called 'seeding'. He told me about the possibilities of developing impotence and incontinenceThe involuntary passage of urine or faeces. after treatment and said that remedies might be able to tackle these possible side effects.

My urologist thought that radical surgery would be for the best, but he and I agreed that I had to make the decision myself.

However, I had to hold off on making a decision between surgery and other options until my heart problems were fully checked out and my doctors thought that I was fit for treatment. This caused a delay of about three months, during which time I was finding out all about prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. and the various treatment options.

As part of my own research, I spoke to family members in the healthcare profession, and read about the experiences of fellow prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. sufferers on websites such as Prostate UK. I also looked at websites about prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. in America because it seemed that a lot more research was happening there at the time.

I also made a list of questions to ask my urologist, including:

  • Is it right that in my case I only have two options to consider: radical prostatectomyThe surgical removal of the entire prostate gland. or radiotherapy?
  • What happens with each type of treatment?
  • How long will I be in hospital?
  • What are the side effects?
  • What will the follow-up consist of?

After all this, I settled on having a radical prostatectomyThe surgical removal of the entire prostate gland., and wrote to my urologist to tell him of my decision. However, I still had to wait for the all-clear for surgery from my cardiologist. Choosing treatments

Having a radical prostatectomy

After some initial tests on my heart, the cardiologist thought that I was fit enough to have treatment (although he did want me to have more tests to diagnose the underlying problem).

I decided to have a radical prostatectomyThe surgical removal of the entire prostate gland., which was covered by my private health insurance. I asked my urologist about his availability to do the surgery and also said what my preferred dates were, as I had to make arrangements for various domestic things.

My private health policy allowed me to choose which urologist I wanted to see, but it was difficult to arrange for the surgery to be done privately at the NHS hospital where he usually operated. This was because the policy did not cover the hospital. I argued my case to the insurance company and they eventually agreed to cover the costs.

Four months after first visiting my family doctor, the date for my radical prostatectomyThe surgical removal of the entire prostate gland. was fixed. A week before the surgery, I had a pre-operative assessment at the surgical outpatients department at the hospital where I was to have the operation. I had more bloodA fluid that transports oxygen and other substances through the body, made up of blood cells suspended in a liquid. and urine tests, and an ECGAbbreviation for electrocardiogram, a tracing of the electrical activity of the heart to help in the diagnosis of heart disease..

My urologist performed a radical prostatectomyThe surgical removal of the entire prostate gland. at the local NHS hospital and four days later I was transferred to a private hospital. Five days later, I went home still having a catheterA tube used either to drain fluid from the body or to introduce fluid into the body. in place. I went back to see my urologist a week or so later for a check-up.

Four weeks after the surgery, I went back to the private hospital for X-rays and to have the catheterA tube used either to drain fluid from the body or to introduce fluid into the body. removed. I stayed in a couple of nights. Around about this time, an appointment for a bone scanAn imaging test that uses radioactive substances to evaluate the whole musculoskeletal system. was made for some months later.

Not long after this, I had more tests on my heart and my cardiologist was able to determine the cause of my funny turns as neurocardiogenic syncope. I was given beta blockers to treat this condition.

Talking to friends and relatives about risk

My urologist had suggested that I bring my son with me to one of our appointments so that they could talk about his risk of developing prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. as it often runs in the family. The urologist advised my son to have an annual PSA test from the age of 40 years onwards, and to know his PSA levels so that he could keep track of them. Risk factors

When I was diagnosed with prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body., I also advised my younger brother to have a PSA test. At first he was reluctant, but he finally agreed to have a test. His doctor thought it wasn't necessary, and so my brother had to change his doctor so that he could have one. Subsequently, he was diagnosed with early prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body., which was successfully treated with a radical prostatectomyThe surgical removal of the entire prostate gland..

As it happens, my elderly neighbour also put off having a PSA test, but I convinced him to have it checked. He too was diagnosed with localised prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. and had a radical prostatectomyThe surgical removal of the entire prostate gland.. Unlike me, he really didn't want to read up on the disease or look at all the options that were open to him. I offered him what advice I could from my own experience, but realised that he was quite frightened and overwhelmed by it all. He preferred his doctors to make all the decisions for him, which meant that it was very important for him to have an expert specialist.

When the first treatment doesn't work

Before having a radical prostatectomyThe surgical removal of the entire prostate gland., my PSA level was 17. Three months after having the radical prostatectomyThe surgical removal of the entire prostate gland., it was measured at 0.2. I had a bone scanAn imaging test that uses radioactive substances to evaluate the whole musculoskeletal system. to see if the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. had spread, and this was also clear.

From then on, my PSA levels were monitored regularly. Six months after having my prostate removed, they began to creep up (from 0.2 to 0.5). My urologist thought that I had some small amounts of cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. left over after the surgery and thought that radical radiotherapy might be in order. He recommended that I be referred to a consultant clinical oncologist.

So, once more I had to go through the whole process of deciding which treatment was best for me - either hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy or radiotherapy to 'mop up' the remaining cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. cells.

Second-time around, I found the decision process to be much less straightforward. Yet again, I talked to my family. Prostate UK also provided some much-needed counsel and support. Through one of the UK's foremost prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. specialists, I was able to contact an expert radiotherapist who was able to answer my specific questions and concerns about radiotherapy.

I also looked at websites about how prostate cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. was being treated in other countries, such as America. It seemed that a lot more research was happening there at the time. In the end, I thought the information I was getting from my family, local experts and my specialists was more relevant as it was related to my own case.

From my own research, I knew that I needed to be certain that my PSA readings were accurate before making my treatment decisions. I asked my doctor to repeat the PSA test so that I could be certain that any potentially unpleasant treatment was truly necessary.

Radiotherapy

In the end, I decided to try radiotherapy to mop up the cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. cells that were left behind after having the radical prostatectomyThe surgical removal of the entire prostate gland.. For this, I saw another specialist and had a type of radiotherapy called EBRT (external beam radiotherapy) at a private hospital. During this treatment, I came into contact with other patients having the same treatment, and found that it could be useful to talk to them about their own experiences.

Unfortunately, the radiotherapy missed the target and wasn't successful. Before radiotherapy, my PSA level had risen to 1.5, and six months later it was at 4.7. My next treatment option was hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy.

Hormone therapy

There were some conflicting opinions as to when I should start hormone therapy. My PSA levels were monitored regularly, and were rising with some velocity. My specialists were advising me that I should wait until my PSA had risen to 15 before I could commence this type of treatment.

I came into contact with other patients having the same treatment, and found that it could be useful to talk to them about their own experiences

However, I was concerned - particularly by how fast my PSA levels were rising. I did some further research, and contacted several experts to ask whether it was best in my particular case to start treatment earlier rather than waiting for my PSA levels to rise.

I also prepared a list of questions to ask my consultant clinical specialists:

  • Are my PSA levels rising very fast?
  • What is my current GleasonA system used to assess the extent of abnormality of prostate cancer cells. score?
  • Why can't I start hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy now?
  • How long does hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy work for?
  • Which drug would be used?
  • Can I have this treatment on the NHS and at my doctor's surgery?
  • Who is overall in charge of me?
  • What new drugs are in the pipeline?
  • Should I have any more tests or scans?

When it did start, my hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy consisted of several cycles of treatment. At first, I would typically see a dramatic drop in my PSA level, which would then rise if I stopped the treatment.

In the first cycle of hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy, I was given tablets to take daily. It was a drug that reduces the growth of cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. cells. Within two months, my PSA level had fallen from 6.7 to 0.1 and I was able to stop treatment for a year. However, 18 months later my PSA levels had risen to 16.9.

My second cycle of hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy used a different type of drug that my urologist thought was getting better results in other patients. This time, a pellet or implant of a drug was injected under the skin of my abdomenThe part of the body that contains the stomach, intestines, liver, gallbladder and other organs.. I had to have repeat implants every three months or so, which further reduced my PSA level and I was able to stop treatment again.

However, my PSA levels rose again (to 31.7), so for the next year or so I had another cycle of treatment and my PSA dropped to less than 0.1. My doctor reviewed my PSA levels and decided that I could stop taking the treatment again. I was advised to have a further PSA test in three months, in the hope that I could pause for a year or so before maybe having to resume.

I also had a bone scanAn imaging test that uses radioactive substances to evaluate the whole musculoskeletal system. at this stage, which found a possible hot spot of cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. in my pelvicRelating to the pelvis. bone. I knew that the hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy may not have reversed the spread of cancerAbnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. to the bones of my pelvis, but I was still very relieved at the dramatic fall in my PSA levels.

Eight months after stopping hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy, my PSA levels rose quite dramatically to 47. My urologist advised me to have a fourth cycle of hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy with implants. Six months later, following a second implant, my PSA levels had fallen to 0.2. My urologist advised me that I could stop treatment, and to have my next PSA test in three months. I will also have another MRIAn abbreviation for magnetic resonance imaging, a technique for imaging the body that uses electromagnetic waves and a strong magnetic field. scan to check on the hot spot in my pelvicRelating to the pelvis. area.

How I feel now and where I go from here

Throughout my treatment (after surgery, through radiotherapy and all the cycles of hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy), I have remained quite fit and healthy. I have had a slight resurgence of my heart problems, probably down to stressRelating to injury or concern., so I am having ongoing cardiac and neurological tests. I have recently been able to reduce my dosage of beta blockers, with a view to stopping taking the heart medication completely.

I have noticed that each time I start another cycle of hormoneA substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. therapy it does not seem to be as good at lowering my PSA levels as it had been the last time. I am concerned that the implants will stop working and that there will be nothing as effective to replace it. My next treatment option would likely be chemotherapyThe use of chemical substances to treat disease, particularly cancer., which I am not keen to start, although I have been told that it can be very effective.