Cancer Diary - DOB July 29, 1948
Preface - Before I retired in April 2011 I worked for the NHS in London for 38 years. Although I thought I knew my way around NHS systems it can seen from the following diary that the pathway for cancer care in the UK is not a straightforward process.
March 13th 2013 - During a consultation to arrange for my hernias to be repaired I asked my GP if it would be sensible for me to have a PSA test for prostate cancer. I explained that I had noticed for some time that I needed to urinate more frequently. My GP agreed and I had a blood test the same day (13/3/2013). Approximately 2 weeks later my GP tried to telephone me about the test results. As I wasn't available to take the call she sent an email on the same day (26/3/2013), that stated as my PSA was slightly high (5.8), she was leaving a "choose and book" form at the practice reception so that I could make an appointment with the urology department at my local hospital.
March 27th 2013 - I rang the NHS Choose and Book service and made an appointment at my local teaching hospital for the earliest time available (21/5/2013). I was rather concerned I would need to wait approximately 8 weeks for this appointment at the clinic so the next day (28/3/2013) I made a private appointment with a urology consultant from the nearby NHS hospital. I was pleased to find that I could see a consultant very quickly and made an appointment for the following Tuesday (2/4/2013) shortly after the Easter holiday.
April 2nd 2013 - At this appointment the consultant examined my prostate, ordered additional blood tests and a MRI scan. Nothing abnormal was detected from the physical examination and a further appointment was made for the following week (11/4/2013) when the results of the blood tests and MRI would be available.
April 11th 2013 - At this appointment I was informed that, although the MRI scan was normal, the fact that my repeat PSA was 7.3 with a free PSA ratio of 17% meant that underlying malignancy could not completely be ruled out. Consequently it was agreed that I would have transperineal biopsies at my local NHS hospital sometime in May. If I didn't hear from the hospital by the end of April I was to contact the consultant's secretary.
April/May 2013 - I rang the secretary on three occasions at weekly intervals from the end of April and eventually on May 17th I received a response from an admissions officer who informed me that my pre- admission appointment for my biopsies would be on Tuesday, May 21st and the actual biopsies would be on Tuesday, May 28th. I was given an appointment date for the biopsy results of June 17th.
June 17th 2013 - At this appointment the consultant was not available so I met a helpful junior doctor who explained that the biopsy results indicated that I had significant prostate cancer. Treatment options were discussed and it was agreed that I would return the following week on June 25th to see a consultant and discuss options more fully.
June 25th 2013 - At this appointment I saw a specialist registrar who explained the treatment options in detail and it was agreed that I would have a robotic assisted radical prostatectomy with a pelvic node dissection and laparoscopic hernia repairs. I wanted the surgery to be carried out as soon as possible so I went to see the admissions officer and found an experienced surgeon who was available to carry out the surgery on July 18th. An appointment was made for me to see this surgeon the following week on July 2nd.
July 2nd 2013 - At this appointment I saw a specialist registrar in oncology who encouraged me to consider other treatment options particularly hormone therapy combined with radiotherapy. I then went for the surgery pre-admission health check where I explained to the nurse that I may not go ahead with the surgery as I was now undecided about the most suitable treatment option.
During the next two days I extensively researched the respective merits of the treatment options but became more confused than ever. On July 4th a specialist nurse rang me at home and explained that the multi- disciplinary team were of the opinion that surgery was my best treatment option. Given this opinion I agreed to go ahead with the surgery on July 18th.
July 9th 2013 - I met my surgeon who strongly agreed that surgery was my best treatment option.
Thursday, July 18th - I had robot assisted radical prostatectomy with extended lymph node dissection on left side. Discharged the next day Friday, July 19th with follow up care to be provided by the community nursing service.
Saturday July 20th 2013 - I rang the community nursing service on the Saturday, Sunday Monday and Tuesday and explained that I would like a district nurse to examine my catheter and surgery wounds. I explained that I did not need anyone to give me a Clexane injection as my wife was dealing with this. A district nurse visited on Monday evening and stated that he was there to give me my clexane injection. I said that my wife had dealt with this earlier that day and asked if he could look at my catheter as I was experiencing some discomfort and also examine the surgery wounds. He said this task wasn't on his copy of the care plan and left. Checking my copy of the care plan later I could see that instructions to check the wounds and catheter were included in the care plan but he hadn't read them. I received no further visits or care from the district nursing service.
August 27th - Appointment with surgeon to discuss persistent post operative scrotal discomfort and swelling. At this appointment I was informed that one of my lymph nodes had tested positive for cancer.
September 17th 2013 - Appointment with surgeon to discuss post operative histology. Final histology was T2 Gleason 4+3+5, margins negative but with a positive node. PSA at eight weeks was 0.17 ug/L. I was informed that I was likely to have metastatic disease and would do best with androgen ablation alone. Repeat PSA in two months time. Radiotherapy not recommended at this time because of the risk of complications.
November 12th 2013 - Appointment with consultant oncologist. PSA increased to 0.38mcg/L. Hormone Therapy recommended - 28 days supply of Casodex provided with first Zoladex injection to be administered in two weeks time.
November 26th 2013 - First Zoladex injection.
December 6th 2013 - Private appointment with consultant oncologist in Harley Street to discuss the possible benefits of radiotherapy. It was emphasised that there is no right or wrong answer to the question of pelvic radiotherapy in my position, but in my case, she would recommend pelvic radiotherapy for consolidation treatment.
December 24th 2013 - Appointment with consultant oncologist at the hospital where I had my surgery. PSA was undetectable so an appointment was made for March 2014. Pelvic radiotherapy was discussed but was not recommended at this stage.
March 25th 2014 - Appointment with oncologist. PSA was still undetectable. Recommendation - continue with hormone therapy, no radiotherapy at this stage. Follow up appointment arranged for June 2014.
May 6th 2014. Private appointment with consultant oncologist at the Royal Marsden Hospital to discuss pelvic radiotherapy. Pelvic radiotherapy was again recommended. When I discovered that cancer was present in one of my lymph nodes in August 2013 I found a number of articles that appeared to indicate that in cases like mine survival times were better when hormone therapy and radiotherapy were administered at an early stage.
June 10th 2014 - Appointment with consultant oncologist at the hospital where I had my surgery. Given the 2nd and 3rd private opinions it was agreed that I would have pelvic radiotherapy.
July/August 2014 - Transferred my care to the Royal Marsden where during July and August I had thirty three sessions of pelvic radiotherapy. The care was excellent.
September 22nd 2014 - Post radiotherapy appointment at the Royal Marsden - my PSA reading was still undetectable.
October 28th 2014 - Bone Density Scan at the Royal Marsden.
January 2015 - Three monthly appointment at Royal Marsden. PSA still undetectable but bone density scan indicated osteopenia present in spine. Weekly dosage of 70mg alendronic acid prescribed.
March 2015 - PSA still undetectable. Following a consultation with my GP and following a number of adverse reactions I decided to stop taking the alendronic acid. I will discuss this with my consultant at the Royal Marsden in July.
July 2015 - PSA still undetectable. At my consultation at the Royal Marsden I was advised to continue to take the alendronic acid. I decided to do this and to adjust my diet so that in the days preceding and following the alendronic acid I ate more low fibre foods. I did this and my adverse reactions to the alendronic acid lessened.
October 2015 - Telephone consultation with the Royal Marsden. My PSA was still undetectable.
January 2016 - At the Royal Marsden consultation my PSA was still undetectable. It was agreed that I would receive one more zoladex implant at the end of January and then return to the hospital for my next appointment in July 2016. All being well the hormone treatment would be discontinued until my PSA began to rise again. This would also give my body a chance to recover.
Care/Treatment Evaluation to date.
Good Points:-
Given my inital relatively low PSA score (5.8 ug/L), clear MRI scan and prostate examination I am glad that my urology consultant recommended that I should have a transperineal biopsy.
The radical prostatectomy surgery and inpatient nursing care was excellent - I suffered from few long term side effects.
The post surgery care provided by the hospital specialist nurses was excellent.
When it became clear that surgery had not provided a cure I arranged for my care to be transferred to the Royal Marsden Hospital. The care I received there during the 33 sessions of pelvic radiotherapy was excellent.
Areas for improvement:-
Time to diagnosis and treatment. A three month delay between a suspicious PSA test and the results of a prostate biopsy is unacceptable. Overall the processes leading up to my surgery seemed to lack urgency. In my case both my GP and Urology consultant believed that I was unlikely to have a problem and if I did have a problem surgery would provide a solution. As there was an eight week wait for the earliest available NHS urology appointment I arranged a private urology appointment for the following week. This consultant then referred me back to his NHS hospital for a perineal prostate biopsy. The referral processes from the private health sector to the NHS are clearly problematic.
NHS response to telephone calls. The urology consultant I saw privately wrote to my GP stating that I should ring his secretary if I hadn't been contacted by his department by the end of April 2013. I then rang and spoke to the secretary on three occasions at weekly intervals before an admissions officer eventually contacted me on May 17th to arrange the biopsy appointment on May 28th. Somewhat ironically the hospital that did not return my telephone calls about the biopsies presented me with a gold long service medal when I retired in 2011 after working for the NHS in London for 38 years.
As I was unable to sleep on the ward following my surgery and as I was experiencing discomfort from the urethral catheter I arranged to be discharged from hospital on the day following my surgery. During my stay I received excellent care from the nursing staff and my discharge was conditional on my receiving follow up care from the community nursing service. I rang the community nursing service and explained my situation on the day following my discharge and then on the Sunday and Monday. Eventually a district nurse called on the Monday evening. When I asked if he could look at my surgery wounds and catheter he said that this was not included in the discharge summary and refused to do so. After he had left I read found my copy of the summary and realised that he had misread the document. I rang again on the Tuesday but no one called and I received no post operative community nursing care.
Currently I remain positive and in January 2016 my PSA was undetectable. My next PSA test is scheduled for June 2016. In the future I intend to do whatever I can to help raise the awareness of the benefits of early diagnosis and early treatment of prostate cancer. Also I believe that adequately funding cancer diagnosis and treatment should be a priority issue for the NHS. For the past twelve months I have been a member of a patient reference group that has been involved in planning a major new cancer centre at the hospital where I had my surgery. When it opens in the autumn of 2016, this should significantly improve the provision of cancer care in South East London.
July 2016. At consultation this week I was told that my PSA was still undetectable. I was also informed that as the intention of my treatment was to be curative and as my PSA had been undetectable since I started hormone treatment in November 2013 my treatment was now complete.
However as I was diagnosed with Gleason 9 Pca with lymph node involvement I will arrange with my GP to have PSA tests at no more than 3 monthly intervals and if and when my PSA starts to rise I will arrange to see an oncologist.
October 2016. My latest PSA score was 0.1. I'll retest in December.
November 2016. At the time of my prostate surgery in July 2013 my surgeon also carried out bilateral hernia repairs. I was disappointed, when on the day following my surgery, he mentioned that he thought the surgical the mesh that he had used would not prove to be strong enough. In May 2016 I visited my GP when my right testicle became very enlarged. My GP confirmed that my hernia had recurred and I was referred to a colorectal surgeon. At a consultation in July 2016 this surgeon confirmed that my hernia was now inguino-scrotal. He stated that repeat surgery would now be more complicated and would carry a risk (assessed as 10%) that the blood supply to my testicle could be severed. I was informed that the testicle would then atrophy. I went ahead with the surgery in early October. The surgery was much more time consuming and complicated than expected and the blood supply to my testicle was severed. It is now eight weeks after my surgery and the post operative swelling and scrotal haematoma is beginning to subside. Last week I saw a urology consultant who confirmed that my testicle would atrophy but would probably need to be surgically removed in a few months time when the swelling and haematoma had reduced. Before my hernia surgery I read online about the direct link between prostate surgery and inguinal hernias. Hopefully in the next few weeks the swelling will continue to reduce and I can start to play tennis, badminton and visit the gym again.
Although I haven't heard anything from the hospital about further surgery to correct problems with my hernia repair the good news is that in March my latest PSA score was still 0.1. I'm encouraged by the stories and attitudes of others on this site and try to go forward positively and enjoy every day.
Best wishes to all.
LN
Thankfully my PSA remains low - 0.1. I continue to remain active and to enjoy life. I also encourage all my older male friends to have PSA tests as I've met so many men during the past few years who have encountered problems in arranging treatment for prostate problems. Best wishes to everyone on this site.
My PSA in May 2018 was still less than 0.01. Although there are inevitably side effects given that I have a radical prostatectomy, radiotherapy and 30 months of hormone therapy I continue to enjoy an active and fulfilling life and to encourage friends and relatives to have a PSA test where this appropriate. Best wishes to everyone on this site.
As my most recent PSA test in April 2019 was still less than 0.01 ng/ml I thought it might be useful if I provided an update on my story. Like most men, I was a bit depressed when following my surgery in July 2013, I found that my PSA score was doubling every 2 months. Following the start of hormone therapy in November 2013, I started to look online to see if there was anything I could do to help slowdown the progression of the PCa.
Early in 2014 I consulted a well known nutritionalist who specialises in the treatment of people with cancer. She advised me to stick to a mainly plant based diet and to start each day with the juice of a fresh organic lemon together with half a tea spoon of tumeric and cayenne pepper. Although my diet is mostly plant based, during the past few years, fish and meat have begun to creep back into my diet. I also rigidly stick to the daily lemon, tumeric and cayenne pepper regime.
Also early in 2014 I began to enquire about extensive pelvic radiotherapy. Although the hospital where I had received my surgery refused to even discuss it with me, I persisted and in July and August 2014 I decided to have 37 cycles of pelvic radiotherapy at the Royal Marsden Hospital in London. I have no regrets about this decision.
Some years ago I looked online extensively to see what low risk substances might be useful in the treatment of Pca. Consequently every day I take the following supplements :- 2 Pomi-T capsules, 1 lyc-o-mato capsule, vitamin B caplets, 40 mg Pravastatin, 2000 i.u. vitamin D3, 75 mg aspirin. I don't know if any of these substances really help but so far they don't seem to have caused any adverse reactions.
Generally I keep fit, exercise regularly and enjoy more than the occasional alcoholic drink. There are inevitably side effects from my surgery, RX and HT. I also recognise that PCa can be an unpredictable disease so I have a PSA test every 3 to 4 months. Overall though, I enjoy life and don't regret any of my treatment choices. Best wishes to everyone dealing with this very difficult disease.
My PSA reading was still <0.1 on 14/11/19. I know every case is different but I update my story in the hope that it encourages others with locally advanced PCa post surgery not to despair. I am very glad that when surgery didn't clear up my cancer I followed it up with extensive pelvic radiotherapy and 30 months of Zoladex. Best wishes to everyone on this site.
My PSA test in September 2020 was still less than 0.1 Given the pandemic my priority for the remaining months of 2020 was to avoid the virus and then to have another PSA test early in 2021.
My PSA in September 2021 was still less than 0.1. I suffer from the usual treatment side affects, but I try to keep fit and enjoy life while remaining very gtateful that my Pca doesn't appear to have progressed.
My September 2022 PSA test score was again less than 0.01. Despite the inevitable side effects of treatment I continue to try to keep reasonably fit and enjoy life.
My PSA was still less than 0.01 when tested in February 2023.
At my last test in February 2024 the PSA level was still less than 0.01. I continue to feel well with just the usual side effects of treatment.
When tested in November 2024 my PSA was <0.03 which I understand that after surgery, radiotherapy and hormone therapy more than 10 years ago is considered to be undetectable. I keep fit and will have another PSA test in 6 months time. Best wishes to everyone.
L's e-mail address is: lnbh81 AT hotmail.com (replace "AT" with "@")
