Stories and experiences from members of the South Warwickshire Prostate Support Group.
If you have your own story that you would like to share with other prostate cancer sufferers or partners within the group, please send it via the contact information on this website. All entries will be treated with respect and can be anonymous if preferred.
Don’t ignore a pain in the bum
My story begins sometime in 2011 when, at the age of 68, I went to my GP with a ‘a pain in the bum’ which I thought could be linked to osteoarthritis which had resulted in a right knee replacement in July 2005. My ever-alert GP (one of a dying breed I’m afraid), after pummeling ageing knees and thighs, asked me to ‘assume the position’ and then declared that I had an enlarged prostate which combined with urinary difficulties, would need a PSA test, together with a referral to the local GU surgeon.
In 2011, these things happened much swifter than today and within weeks my surgeon was ordering biopsies, a appointment with an oncologist and booking an MRI scan. Within weeks, all this data was collected, and I was sat with the prostate cancer team discussing options – surgery or radiotherapy. A good friend of mine had successfully taken part in a Brachytherapy trial at UCH in London. My nearest Brachytherapy unit in Worcester was only just forming so I was referred to Oxford and booked in for the procedure in one month’s time (yes, still with the NHS)! Unfortunately, the pre-op ultrasound showed my prostate to be over-enlarged and unsuitable for the Brachytherapy procedure.
The next day I picked up the phone to my cancer support team and within 2 weeks I was back with my original GU surgeon discussing surgery and 1 month later, on an early February morning in 2015, I was walking into the anesthetic room at my local hospital for a five-hour session. Yes, I’m still in the NHS!
After three months of catheter-led recovery, followed a year later by post operative infection and bladder stricture, I am on an annual PSA test with, thankfully, a zero PSA score.
1. The NHS always and at all levels from primary care to post operative support treated me with skill, understanding and respect for which I am and will remain eternally grateful.
2. Brachytherapy is an important method of treating cancer. It works by destroying cancer cells by targeting them with radiation and stopping them dividing and growing.
Ian, Warwick 2024
My Option for Active Monitoring
I was diagnosed in April 2022 at age 63 after reporting what might have been a little blood in my urine and minor changes in urinary patterns. I’d been checking PSA since 2016 but it had gone from 3.8 in July 2019 to 5.6 in Sept 2021 (it had been as high as 6.3 in June 2017). This coupled with a family history of cancer (both parents had bowel cancer and one breast cancer too) meant I was sent for an MRI and then a biopsy.
I was completely blindsided by the diagnosis (Stage 2 Gleeson 7 (3+4)) and was recommended treatment (surgery or radiotherapy). Their logic was I was young and healthy and it had been caught early so it was curable. I did a lot of research and spoke to Prostate Cancer UK and to both a surgeon and a radiotherapist. I really didn’t like the potential side effects of treatment- erectile dysfunction and potential urinary incontinence. I also spoke to quite a few guys who’d had it and various treatments. In most cases they hadn’t suffered urinary problems for longer than a week or two in most cases. ED sounded more common.
I agreed with my consultant that active monitoring was not unreasonable (i.e. PSA tests every 3 months and action as and when changes suggested it was necessary. From my initial MRI he thought the tumor could be close to the wall of the prostate (more risk of breakout and metastasizing or spreading), so suggested a template biopsy within a year (double the number of samples). This was done and resulted in the downgrading of my tumor to a Gleeson 6 (3+3).
My PSA was fairly stable at around 5 but then jumped inexplicably to 12 after 18 months. This prompted another PSA test 2 weeks later which came in at 8 & an MRI which the consultant thought better than the first. My most recent PSA in April 2024 was 7, so my consultant sees no need for intervention for at least 2 years- but with quarterly PSA tests to check.
I’m happy with my decision for active monitoring. My hope and expectation (supported by my consultant) is that the regular NHS radiotherapy offering will by then be the 5 higher intensity doses over 10 days currently only available in limited trials or privately, rather than the current NHS standard of 20 or more over 4 weeks. Who knows what other treatments might be developed.
For active monitoring you have to be OK co-existing with a tumor inside you. I can’t say I like the idea but don’t dwell on it and know it’s very unlikely to change suddenly and that I can get treatment if and when it does grow. I’ve changed my diet a bit (cut back on cheese and eggs and chicken and added ground linseed to my muesli) and think this helps a bit, though backsliding is a danger. Had my diagnosis been a 4 +3 rather than 3 + 4, I’d probably have gone for private radiotherapy as I have cover through work. I’ll be long retired and reliant on the NHS when I do need any future treatment, but am comfortable with that.
June 22nd 2024
My Story
I was diagnosed with prostate cancer in 2004 at the age of 55. I had no symptoms but did have a slightly elevated PSA count. My treatment options were radiotherapy or radical prostatectomy. I chose surgery on the advice that if the cancer were to return after surgery, I could still have radiotherapy. If I had chosen radiotherapy, it would not have been possible to follow that with surgery.
All went well for about four years but then my PSA score began to rise. I had an MRI scan to try to locate the site of the cancer, but nothing could be found. As a result, I went on a regime of depot injections every 12 weeks. These were designed to control the growth of the cancer by suppressing my testosterone. This worked for another five years before my PSA began rising. In 2015 the decision was made to have 33 sessions of radiotherapy to my prostate bed, i.e. the part of my body where the prostate had been removed from. It worked!
I continued to be monitored with PSA tests but it was not until 2024 that a PET scan revealed where the cancer had returned. It was found in the prostate bed. Normally the hospital would not do radiotherapy in the same area that had been treated previously. However, in view of the 9 year gap they decided to give me 5 sessions of radiotherapy. This has had the desired effect, and I am back on the regular PSA tests.
The group has been important to me over the last ten years as I have learned to live with prostate cancer.
May 28th 2024
Why South Warwickshire Prostate Support Group?
Joining the Group allowed me to hear the experiences of other members and therefore helped me to negotiate with the ‘NHS’ organization.
The Group gave me the confidence to contact Consultants directly and obtain second opinions increasing my knowledge about Prostate Cancer and therefore helped me move forward with my treatment.
May 27th 2024
My Prostate Cancer Story
The first issue with my prostate occurred in mid-2011 (at age 66) when my GP detected a lump. I had a prostate biopsy in August 2011 which indicated a benign lump. From then on I had a six monthly PSA test which was a steady 4 for many years. I was also prescribed Tamsulosin and Finasteride as my urine flow was poor. Latterly my PSA crept up to 6.
I returned to the GP in July 2023 (at age 77) because I was urinating 3 to 5 five times a night, and still am! He checked my prostate and found a lump which a biopsy confirmed to be a cancerous growth which, upon investigation, had spread no further. My Gleason score was 4+4=8 and I commenced hormonal therapy, which continues, in October 2023.
I met cancer consultant, Andrew Chan, in November 2023 and we talked through the options. As I have quite marked urinary symptoms, we discussed the risks associated with radiotherapy and decided that I should have further investigations of my urology before making any decisions. I have had the investigations and have a meeting with the urology consultant, Maya Harris, in early July. Dr Chan also advised me that, at age 78, I have a 46% chance of living 10 years if I continue hormone therapy with its side effects, and a 52% chance of living 10 years if I have radiotherapy, with the associated risks. The big issue for me is quality of life versus longevity of life.
May 19th 2024.
My Prostate story with PACE nodes so far…
I was diagnosed in late 2022 after going through the usual procedures and receiving an elevated PSA test. For information, my PSA was 5.6, which while elevated from the previous year’s 4.2, I didn’t think was too much of a concern. However, after the no-holes barred biopsy, I was told that I did have cancer, but, ‘nothing to worry about, as it was all contained within the prostate capsule, and there were many options, and that I should go home and read the booklet’.
After reading the booklet that had my biopsy results written in, I began to realise that there was a problem, from a score of 0-10 on the Gleeson scale I was 9 (5+4). This was a major shock to me and took some time to come to terms with, particularly having read the parts in the booklet that refer to what the outcome can be if the said cancer does break out of the capsule. I became obsessed with getting things moving as quickly as possible, as in my mind, it could break out any day. At this point, I decided to reach out to the support group, which not only allowed me to express my concerns openly but without adding any increasing worry to the family, who were struggling with this as much as I was. They were also able to put my mind at ease, to some extent at least, that prostate cancer is very slow-growing and that there was no need to panic.
Well, hopefully, it didn’t break out and I was eventually offered a place on a clinical trial called PACE Nodes. The principal difference between this and normal radiotherapy for prostate cancer is, instead of the twenty plus visits to the radiotherapy machine, this trial proposes just five but at a much higher intensity. As my Gleeson score was so high and there was a possibility of trace cancer permeating the lymph nodes in the surrounding area, it was suggested that these were to be zapped as well.
My options with respect to treatment were quite limited as my prostate was either virtually, or actually attached to the colon wall, this made surgery problematic with potential side effects which could lead to a need for a permanent colostomy or stoma bag. Not an option I favoured.
So PACE Nodes it was. I think it’s true to say that most who opt for the standard radiotherapy get very few initial side effects, with me there was definitely some discomfort in the nether regions, but this faded into insignificance when compared with the issues I had with leg pain, aching and unsteadiness over the following months. This was believed to be caused by nerve damage from the radiotherapy and some Lymphedema from having lymph nodes destroyed. The severity of this went in waves, it could be quite debilitating for a few months and then fade for a week or two, only to return again, mostly at night, disrupting sleep, which only makes any issue worse.
Progressively it got easier, and, long story short, I’m pleased to say that this has now settled down, and currently, ten months on, I have virtually no pain, just hot tingling in my shins and feet at night. Oh along with the hot flushes that is part of the hormone therapy, only two years and two months to go on that front!!!
If you wish to discuss any issues raised please contact me – paul@paccbooks.com
May 24th 2024 Paul Cooper