At MAC we believe that every survivor has a story worth sharing. We are here to provide peer support for those affected by Prostate Cancer. If you require assistance or have any questions, please don’t hesitate to reach out.
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Prostate Cancer Survivor Stories
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*NB: images are stock photos for illustration
Diagnosis : 2009 – Prostate Cancer: Gleason 6
Treatment: Active Surveillance
In 2009 age 62, I went to my GP on to get my blood pressure checked. He took blood samples that I thought were just routine.
About a week later he advised me that there were some high blood test readings, and he would like me to see a urologist. At this stage I didn’t realise what the readings were, or what they might mean. The urologist explained what the prostate gland is, what it does, and what PSA readings can tell. The jump in PSA readings from 2.9 to 4.5, was a cause of concern. He recommended a biopsy. After a TRUS biopsy, I was asked to come back to the urologist and bring my wife with me.
At the visit the consultant informed me that I had low grade prostate cancer with cancer cells in 1 sample of the 12 taken, classified as Gleeson 6 on the Gleeson Scale (6-10.).
This was a total shock as I had no symptoms or any difficulty with my urinary function. My options were surgery to remove the prostate, (which carried a risk of incontinence) or Active surveillance, which involved getting a blood test every 6 months to monitor my PSA and visiting my urologist every 6 months and getting a Digital Rectal Examination (DRE) to monitor the status of the cancer. I talked over the options with my wife, and I decided to follow Active Surveillance as I did not wish to risk incontinence, unless it was absolutely necessary, and I could always opt for surgery at a later stage if I changed my mind. I also explained my decision to my three adult children.
The most challenging issue for me was accepting that I had prostate cancer. I felt I hadn’t caused it, didn’t drink or smoke, and exercised regularly. On the plus side, it was unlikely to cause me any difficulty or to kill me. About 80% of men who reach the age of 80, will have prostate cancer but it will not kill them.
I found great comfort and support in meeting and talking to other men, diagnosed and treated for prostate cancer and who were living normal lives 15 years+ after the diagnosis.
Further TRUS biopsies in 2013 & 2015 both showed no cancer in the samples. In 2019, I got an MRI which showed a tumour and the Transperineal Biopsy confirmed Gleason 6. In 2021 another Transperineal Biopsy showed 3 samples positive out of 42 samples, still Gleason 6.
So, now in my 70’s, my PSA is in the range 5 to 7.5, I am in good health, continue to be monitored. And I have avoided any of the side effects of treatment.
Diagnosis: 2021 – Enlarged Prostate + Early-Stage Cancer
Treatment: Prostatectomy – Robotic Keyhole surgery
I’ll start my story in my early 60’s – I’d had an enlarged prostate for many years and was seeing a urologist to treat that and to alleviate the accompanying bladder problems. Examinations had always shown enlargement, but no unusual shape and my PSA was never elevated for my age.
In 2019 my consultant recommended an MRI just to be on the safe side. This showed something he was concerned about, so he arranged a biopsy, which was clear, and the plan was to continue to monitor things. A further MRI & biopsy in early 2021, showed early-stage cancer. My consultant’s initial advice included the usual surgery and radiotherapy options, but he also advised that I could “do nothing for a year if I wanted” and continue to monitor things – known as “active surveillance”. While I never considered that as an option, it was some comfort as it suggested early detection and that things were not very serious at this point.
I took a bit of time and weighed up the “surgery/radiation” options though I was pretty much focused on surgery from the outset. I was concerned about the side effects of radiation and the fact that surgery was not subsequently an option if radiation didn’t work. Getting rid of it once and for all seemed to me to be the best option.
I read up on the implications of surgery, likely after-effects, etc. while awaiting my operation, which happened in Summer 2021. Ahead of surgery, communication was good with the consultant, the anaesthetist, etc.
Robotic keyhole surgery was successful, and I was discharged on day 3. Recovery went well, and I was able to walk a reasonable distance (c10,000 steps), albeit slowly, within a couple of weeks. I started physiotherapy after a few weeks and started doing my own exercises all of which helped to improve bladder control. I’d have to admit though, that it’s not as good as it could be as I didn’t persist with the exercises. This is something I’d strongly advise other men to do – keep doing your pelvic floor exercises.
It’s not nice wearing pads, but it’s part of my life now. I have to visit the loo more than I used to, but so be it. Follow up PSA tests turned out “undetectable” so (fingers crossed) all has gone to plan. Through personal contacts, I was able to talk to someone who had been through the whole thing already and I found this very helpful. I’d strongly recommend peer support for all men going through this.
Diagnosis: 2002 – Intermediate risk prostate cancer
Treatment: Androgen Deprivation Therapy & Radiotherapy
Following diagnosis with Intermediate risk prostate cancer, I started Androgen Deprivation Therapy (a.k.a. Hormone Treatment) a few months before my radiotherapy commenced. I expected to remain on ADT for at least a year. The radiation oncologist told me that I would experience a range of symptoms as a result of ADT. In my late 50’s and still sexually active I was told to expect impotence, hot flashes, and fatigue among others. He also said that the radiotherapy could also impact on sexual functioning.
I learned that prostate cancer can be a two-person disease. I explained these likely changes to my wife. At that point she was much less concerned than I, at the likely impact of ADT on our sex life and was more focused on mortality. ADT had the predicted effects: impotence and loss of libido, hot flashes, and fatigue. But the bright side was that within a few months of completing my radiation treatment the PSA was undetectable. My oncologist asked if I would like to cease the ADT and I agreed. Potency returned in less than two months and other ADT symptoms also faded away. The resumption of sexual relations was also aided by Cialis (which is longer lasting than Viagra).
However, about 4 years after my radiotherapy my PSA readings began to climb steadily. When the PSA reached 6.5 ng/ml, the oncologist said it was time to go on ADT again and this time it would be permanent. The subsequent negative impact on sexual functioning again created difficulties in our relationship. I feel this is a greatly underestimated aspect of ADT and should be highlighted more.
About a year later, I came across the concept of Intermittent Hormone treatment. I discussed this with my radiation oncologist & it was agreed to follow the protocol for intermittent ADT. I stopped the ADT and found that sexual functioning returned although it needed the assistance of Cialis. The plan was that when my PSA rose to the pre-agreed level of 10 mg/ml I went back on ADT again. This cycle of being on/off ADT continued for several years, but the periods when I was “off” were getting shorter as my PSA tended to climb more quickly. As often happens, the question of continued sexual activity was overtaken by events as my wife developed a terminal illness. I now stay on ADT to ensure continued control of the cancer.
Diagnosis: 2020 – Gleason 8, T3 tumour
Treatment: Robotic Assisted Radical Prostatectomy; radiotherapy and Androgen Deprivation Therapy (ADT)
I was diagnosed with prostate cancer almost by chance. Apart from having to get up to the loo at night I didn’t have any other symptoms. My GP had been checking my PSA since my mid-50’s just as a precaution and it was always very low for my age. In 2019 I was in hospital for a coronary procedure and in the weeks afterwards noticed some blood in my urine. My PSA was still low at this stage, so I wasn’t too worried and once I’d recovered from the coronary procedure, I was referred to a urologist. The thinking was that I had an enlarged prostate but there was still no concern about cancer at this stage. However, my PSA level then doubled in the space of a few months. A biopsy showed that I had a high-risk prostate cancer (T3, Gleason 4+4) with about a third of my prostate having cancer cells. There was no history of prostate cancer in my family so the news was completely out of the blue and shook me quite a bit.
As the cancer was high-risk and my PSA had doubled in 3 months, I had no hesitation in opting for surgery immediately. I had a radical prostatectomy in early 2020 and had 25 lymph nodes removed. The operation went well, and my first PSA test 2 months afterwards was ‘undetectable’. However, the next test 3 months later showed rising PSA and a further month later it had doubled again. This is known as a “biochemical relapse” – in ordinary language it meant all the cancer hadn’t been removed and it had started to grow again.
I was then referred to a radiation oncologist and commenced on ADT & had 35 sessions of radiotherapy. I’ve just completed the ADT after 2 years – the side effects are unpleasant: fatigue, hot flashes, weight gain, reduced sexual functioning. On the bright side the treatment has got my PSA down to 0.00 for the past 18 months. So, overall, I’m now hopeful for the future but also realistic, in that I may require further treatment at some stage if the cancer starts to grow again.
I take a vitamin D supplement every day and do weight-bearing exercises a few times a week to strengthen my bones as one of the long-term effects of ADT can be osteoporosis & muscle-wasting. The exercise is also good for lifting your mood and wellbeing.
I’m very satisfied with all the clinicians involved in my diagnosis and treatment though I think it would be a great improvement to have much more information and discussion at the point of diagnosis on the impact that prostate cancer and the various treatments can have on your overall psychological and mental wellbeing. I felt very unprepared for all of that. It was only when I joined a prostate cancer peer support group (ARC Cancer Services) during my radiotherapy that I felt I was getting the information and support that I needed.
I was diagnosed with Prostate Cancer when I was 59 years of age. My PSA had increased but at that time I wasn’t very well informed about what that meant. The first oncologist I saw recommended surgery. I had my biopsy and got septicaemia from the procedure which lasted about 3 months and wasn’t pleasant. My Gleason score was high, and surgery was the only option. Fortunately, my cancer was contained within the capsule of the prostate. My preference was for robotic surgery as it seemed to offer the best chance of getting back to work quickly. There was a delay for 2 months in getting my surgery as I wasn’t happy with the urologist, so I changed to a different urologist and hospital.
The operation went very well, and I was back at work in 3 weeks! My PSA tests after the surgery were good but the following year, my PSA increased, and I had to have radiotherapy.
This lasted for 37 sessions, and the most difficult part was when one had to drink 2 pints of water before the procedure. If there was a delay in having the session it was excruciating waiting around. The radiotherapy was successful and since that time I have been able to lead a full life. I play tennis, cycle, and walk. Now in my early 70’s, my PSA is checked yearly and so far, the readings have been in the right range (less than 0.05) which is where they should be. I would never have detected the increase in my PSA if my wife who is a nurse hadn’t insisted on having it done as part of a general health check when I was 59. I hope that all men will get their PSA checked regularly when they reach their 50’s, and earlier if there is a family history of prostate cancer.
Having had urination frequency problems during 2016, I had some blood tests which yielded high PSA results. I then had a TRUS biopsy which showed prostate cancer in all 12 samples, and I was diagnosed with ‘aggressive’ prostate cancer in November 2016. I then had three scans around Christmas/New Years (CAT, Bone and MRI scans) and was diagnosed with advanced prostate cancer in January 2017. The exact diagnosis was Gleason Score 4+5=9, T3b, NX, Metastatic localisation more bone than lymph, Low Metastatic Burden. I was in my early 60’s at the time. I had done some research and the diagnosis was not a total surprise, but the advanced (or ‘metastatic’ or ‘secondary’) diagnosis was a hammer blow, and I can look back now on 2017 as a time of huge uncertainty when life’s horizon seemed very near.
I was put on hormone therapy with a twice-yearly ADT injection (Eligard). I also had 6 sessions of chemotherapy (every 3 weeks) followed by 37 sessions of radiotherapy. I experienced several problems during the chemotherapy, including fatigue and loss of taste but I was on other medication to combat nausea and bone pain, and this medication was very successful. I experienced some hair loss with noticeable thinning (to myself at any rate). I can’t say that the radiotherapy caused any great problems apart from the inconvenience. Surgery was never an option as there was no point closing the stable door after the horse had bolted.
In March 2017, I also elected to take part in a trial involving another ADT drug (Abiraterone) and have been on these tablets daily ever since. It is given with steroid tablets which help reduce or eliminate side effects. Abiraterone is usually given with (or after) other types of hormonal therapy drugs. Hot flashes (a consequence of ADT) were a recurring problem during that first year but are now less frequent. I had some night-time accidents before and during chemotherapy, but these abated before the end of that treatment and did not recur since.
I still experience some tiredness occasionally but maybe this is just a consequence of the ageing process – I am now in my late 60’s. I also take tablets to combat urination frequency, so this is not really a problem now. Overall, the greater problem remains the loss of libido which is one of the main consequences of ADT. During 2017 my PSA levels fell rapidly and by mid-2018 they fell to an undetectable level (less than 0.05 ng/ml), staying thus until mid-2021 when they began to slowly rise. The levels are now at around 0.20 ng/ml which is not a cause of concern. I have a blood test every month and attend the hospital quarterly for a check-up and a re-issue of my 3-month course of tablets.
Significantly at the time of my diagnosis I failed to have contact with anyone in my situation, despite seeking out such contact. When the Covid pandemic arrived in 2020 I started to meet, in group sessions online (ARC Cancer Services), a few other men who have had a similar diagnosis to my own, some of them further down the road than me and that has given me reassurance that there is a life after diagnosis. I have also become a peer-to-peer support volunteer with the Irish Cancer Society and hope that I have enabled some men, newly diagnosed with advanced prostate cancer, to fill that information/support void that I experienced following my own diagnosis.
Now life is not so bad. Seeing my grandchildren growing up and being able to participate in their lives is a real bonus. I am grateful to be able to continue with my hobbies including extensive walking. Medical advice is that physical fitness has real benefit in dealing with cancer. I had already retired prior to my diagnosis and my wife, and I have travelled quite a bit over the past few years. The loss of libido remains an ongoing issue, but medication has helped. Looking back, I regret not having my PSA checked well before symptoms started and the current Europe wide campaign, supported by the EU Commission, for early detection through national screening programmes is to be welcomed. Hopefully over the next few years this will significantly reduce the incidence of advanced/metastatic prostate cancer.