My prostate problems date back 15 years when I started needing to pee very frequently. This got so bad that in 2010 I had a TURP operation in which the majority of my prostate was removed; a biopsy on what was taken out showed me to be clear of cancer - so I had been suffering from BPH. Naively I thought that I wasn't at risk of prostate cancer because I had so little left. I neither asked for, nor was offered, PSA testing until this August. In January this year I was having bowel motion problems; this led to a colonoscopy which was clear. I also have an annual MRI scan on my left kidney because there is a tumour - this scan has always shown that the tumour is not growing. In view of the colonoscopy and the kidney scan both being clear, and the regular poo test also being clear, I was confident of not having cancer.
In August this year I started to feel awful and just wanted to sleep all the time. I eventually had a PSA test - the result was 4020.
Events moved very quickly after that. MRI scan, CT scan, bone scan, full body X-rays, biopsy, loads of blood tests etc. These showed that I have advanced prostate cancer that has spread to the lymph nodes, various bones, rectal wall, bladder and various other areas.
As an incidental finding from the CT scan it was ascertained that I had a PE - so I am now on daily blood thinning injections. Within a couple of days of starting the injections I started feeling a lot better, without the need for my afternoon nap!
I was put on Hormone treatment within a few days. Initially this was Bicalutamide tablets (150mg) for one month. Half way through the month I had the first Decapeptyl SR injection (3mg), then a Decapeptyl SR injection (11.25) a month later. I understand I will be having Decapeptyl SR injection (11.25) every 3 months for the foreseeable future.
I have had a prophylactic hip pinning operation to insert an intramedullary nail to mitigate the risk of problems with my hip bone.
I am currently having chemotherapy (Docetaxel) every 3 weeks for 6 cycles.
So far I have not been given any choice regarding treatment. However, I think there will be more discussion after the 6 cycles are complete, and I have had a scan. My oncologist mentioned radiotherapy in our latest meeting.
Currently I am feeling optimistic; I am symptom free, and the fact that I was put through the hip operation and am fit enough for the chemotherapy would seem to imply that I will be around for the medium term at least! I also feel a lot better physically than I did in May, June, July, August!
I had 5 cycles of chemotherapy. These went smoothly, but one week after the 5th cycle I started to feel unwell and was admitted to hospital in late January with an infection and spent a week there as an inpatient. As a result my 6th cycle was cancelled. In the second half of February I had a CT scan and a bone scan. At my oncologist appointment last Friday (15th March) I was told that the treatment is working and my scan results are 'excellent'. The possibility (or probability) of radiotherapy was mentioned, but it was decided to defer discussion of this for a couple of months. At the moment, I feel that I need more time to recover from the chemotherapy and the infection. In January I also had a meeting with the orthopaedic team following insertion of the intramedullary nail in my hip; the X-rays show that I am recovering well from this procedure, and whilst I will never be able to run again any activities that do not involve running are fine.
It is now virtually a year since my diagnosis. Overall, I feel OK, although my recovery has possibly been at a plateau for the last 4 months or so. When I wrote back in March, I felt it had been good news all along the way despite the infection following my 5th cycle of chemotherapy. In the first week of April I went down with a bad cold that left me with occasional bouts of light-headedness and dizzy spells. At my oncology appointment 15 May I was informed that my PSA had gone up to 0.42. Whilst this is still low, it is 50% higher than it was in March. Previously it had always fallen, quite spectacularly to begin with;
4020 on 13 August 2018
51 on 3 October 2018 (after going on Bicalutamide tablets (150mg) for one month on 30 August 2018, and a Decapeptyl SR injection (3mg) on 13 September)
2.1 on 7 November (after starting 3 monthly Decapeptyl SR injections (11.25) on 12 October, plus chemotherapy (Docetaxel) from 25 October)
0.69 on Christmas Eve 2018
0.31 on 12 February 2019 (3 weeks after my final chemotherapy session)
0.28 on 8 March
0.42 on 10 May
To counter the PSA increase I was immediately put on daily hormone tablets (Bicalutamide 50mg) and sent for radiotherapy on my prostate (6 sessions, once a week). I had a blood test on 5 June that showed my PSA down to 0.19. This was before my radiotherapy had started. My radiotherapy finished 3 weeks ago. My next appointment with the oncologist is at the end of August so I will be interested to find out the next steps.
My side effects (hot flushes, fatigue, lack of energy, light headedness, weight gain) at the moment are all minor and don't prevent me from doing most of the things that I want to. So I remain optimistic. I am also encouraged to have been told that if things deteriorate there are several other treatments that can be tried.
I saw my oncologist last week. Good news; my PSA is less than 0.01 (i.e. 'undetectable'). This is unchanged from my previous appointment 3 months ago. I was told to continue with the hormone treatment (daily tablet plus quarterly injection). My oncologist is arranging for a bone density (DEXA) scan to check that the hormone therapy is not weakening my bones too much. I asked when/if I would have further CT or bone scans, but I was told that I would not be having these for the time being. My oncologist said she would see me again in 3 months time.
Generally, my health remains good. The worst problem I have had recently has been gout. Also the frequency and urgency of my urinating got quite bad a couple of months ago. This could be a side effect of the radiotherapy on my prostate. My GP has put me on tamsulosin. The urgency has now eased considerably, and the frequency quite a lot also. I have an appointment with my GP in 10 days time regarding the gout and peeing situations.
Overall I am thankful to still be enjoying life at 72 years of age, and a PSA score that was over 4000 15 months ago.
I had my oncology appointment today (26 February 2020). The doctor told me that my PSA is ZERO! I am to continue with my current treatment (a daily 50mg bicalutamide tablet, and a quarterly Decapeptyl SR 11.25mg injection), they will see me in clinic again in 3 months time.
I had my quarterly oncology consultation this week. This was a telephone appointment due to the Covid-19 crisis. My PSA is less than 0.01 (i.e. 'undetectable'). This has not changed for the last 9 months. The heavy dose of hormone therapy i.e. daily bicalutamide tablet (50mg) plus a decapeptyl injection (11.25mg) once every 3 months is having the desired effect. However, I am feeling the side effects in that I now have breast swelling and tenderness in addition to the hot flushes. The oncologist said she will send me a prescription for tablets that can help with the hot flushes, but I have to put up with the breast swelling/tenderness because I am not suitable for any of the ways that this can be eased. I enquired about the possibility of reducing the hormone dosage, but she advised against this as I am doing so well. Therefore, I am continuing with the current treatment and will have my next consultation in 3 months time.
The DEXA scan that I had a few months ago showed that my bone density is within the normal range for my age. So more good news.
Not directly related to the cancer, but the gout (which was troubling me considerably last autumn) has been cured by the allopurinol tablets that I take every day.
My local prostate cancer support group is managing to keep going thanks to video conferencing. I find it helpful to hear how other people are getting on.
Two weeks ago marked the second anniversary of my advanced PCa diagnosis. Today I had my appointment with the oncologist. This was by video call. I was impressed with the technology, all went smoothly.
I feel fairly good overall. The fatigue continues but is manageable. The hot flushes also continue but are manageable. I also have breast swelling and tenderness. These are all side effects from the hormone therapy; I am on a daily bicalutamide tablet (50mg) plus a decapeptyl injection (11.25mg) once every 3 months. This seems a rather a lot, but my oncologist says it is the normal dose, and as I am doing so well that it would be best to continue as is. I will have another appointment in 3 months time.
My PSA is 0.01. Therefore, it has been 'undetectable' for over a year now. What I think I would find really reassuring is to have scans that show that my tumours are not growing. But I understand that this would be only if my PSA starts to rise again.
Today I had my appointment with the oncologist. This was by video call. It all went smoothly. My PSA is unchanged at 0.01. As I feel better than I have since my diagnosis back in August 2018, this is what I was expecting. Nonetheless it is still a relief.
The side effects from the hormone therapy (a daily bicalutamide tablet (50mg) plus a decapeptyl injection (11.25mg) once every 3 months) continue but are manageable and no worse than 3 months ago. I have become used to them. Fatigue, hot flushes, and breast swelling and tenderness are no big deal!
Oncology appointment today. My PSA is still very low at 0.02, but this is the highest it has been for 18 months. Overall, I am feeling OK so I had been confidently hoping that it would still be 0.01 given the massive amount of hormone therapy that I am taking. On the plus side, my oncologist is arranging a bone scan and a CT scan. Presumably the scans are because my PSA has crept up, although the previous scans were in February 2019. My oncologist says that she will see me again in 4 weeks’ time with the results of the scans. She also reassured me that she has other treatments ‘up her sleeve’ that can be brought into play if necessary!
A short phone call from my oncologist yesterday to tell me that the recent scans (CT and bone) indicate that I continue to have a 'good response to the treatment'. I was very pleased to hear this. Therefore the current medication is to continue unchanged. I am feeling the same as I did a year ago.
Today I had my appointment with the oncologist. This was by video call. My PSA is unchanged at 0.02. This was a relief.
The side effects from the hormone therapy (a daily bicalutamide tablet (50mg) plus a decapeptyl injection (11.25mg) once every 3 months) continue but are manageable and no worse than before. I became used to them a while back! Fatigue, hot flushes, and breast swelling and tenderness are no big deal!
Next appointment in 3 months time.
Yesterday (13 October) I had my appointment with the oncologist. This was by video call. It lasted only a few minutes. My PSA is unchanged at 0.02. This was a relief again.
The side effects from the hormone therapy (a daily bicalutamide tablet (50mg) plus a decapeptyl injection (11.25mg) once every 3 months) continue but are manageable and no worse than before. I became used to them a while back! This is the same medication I have been on for over 2 years. Fatigue, hot flushes, and breast swelling and tenderness are no big deal! Fatigue is probably the worst of these, it means I have to pace myself and plan my day carefully.
Next appointment in 3 months time. I am also being sent for a DEXA bone density scan in January.
Oncology appointment earlier this week. PSA 0.01. It had been 0.02 for my four appointments in 2021. So, this is good but not particularly significant at this low level.
My DEXA scan showed ‘borderline’ osteoporosis. But it showed only a minimal change from my previous scan 2 years ago. At that time my result indicated that I was within the normal range for a man my age. I have not been given my actual readings, but this is something I will remember to ask for in 2 years’ time when I have my next scan, hopefully!
The appointment was by telephone, it took only around 5 minutes. The letter for my next appointment (on 11 May) states this will also be a telephone appointment. My previous appointments over the last 18 months had all been by video, so I wonder if the video, appointments have been stopped. The next appointment is a gap of 4 months, whereas previously it has been 3 months. I doubt this is significant, I could speculate that the late Easter this year has caused it. In the meantime, my medication continues unchanged.
Overall, I feel pretty good. The side effects from the hormone therapy (a daily bicalutamide tablet (50mg) plus a decapeptyl injection (11.25mg) once every 3 months) continue but are manageable. The fatigue is the most annoying, the hot flushes are OK and remind me that the treatment is working, the breast swelling/tenderness, weight gain and loss of libido don’t bother me!
Oncology appointment last week. PSA 0.02. It had been 0.02 for my four appointments in 2021, then dropped to 0.01 in January. The miniscule increase is probably insignificant at this low level. Overall, I feel pretty good. The fatigue is annoying but manageable.
The appointment was by telephone, it took only 5 minutes. The letter for my next appointment (on 10 August) states this will also be a telephone appointment. In the meantime, my medication continues unchanged.
Oncology appointment this week. PSA 0.01. Overall, I feel pretty good. The side effects are annoying but I have learnt to live with them.
The appointment was by telephone, it took only 2 minutes. My medication continues unchanged.
Oncology appointment yesterday. No change from 3 months ago. PSA 0.01. I feel pretty good. Main side effect is the fatigue. Weight continues to creep up. The appointment was by telephone, it took only a few minutes. My medication continues unchanged.
Oncology appointment yesterday. PSA 0.02. I feel pretty good. Main side effect is the fatigue. Weight continues to creep up slowly. The appointment was by telephone again, it took only a few minutes. My medication continues unchanged.
Oncology appointment earlier this month. PSA unchanged 0.02. I feel pretty good overall. Main side effect is the fatigue. Weight seems to have stabilised.
The appointment was by telephone again, it took only a few minutes. My medication continues unchanged.
Today is 12 August 2023. Tomorrow it will be 5 years since my PSA test that gave a result of 4042. I do feel blessed that I am still around, and feeling reasonably OK.
Last week I had my regular appointment with my oncologist. It was a short phone call (this has been the same for quite a while). Aside from asking me how I am feeling, and telling me that my PSA is 0.01, the only other thing she said was that she will schedule a DEXA scan for December, but there will be another telephone appointment before that in November.
I am now attending 2 prostate cancer support groups. 'Living well with APC' is a monthly zoom meeting attended only by men with advanced prostate cancer. My local support group is now meeting in person following the lifting of covid restrictions. It is fascinating that everybody has a different story.
Oncology appointment earlier this month. PSA 0.02. It has varied between 0.02 and less than 0.01 (undetectable) for the last 3 years. It seems that the hormone therapy (a daily bicalutamide tablet (50mg) plus a decapeptyl injection (11.25mg) once every 3 months) is working.
I had a DEXA scan last week. This indicated virtually no change from previously which showed ‘borderline’ osteoporosis. This is quite normal for a man of my age.
Overall, I feel pretty good. The fatigue and lack of energy are annoying, the hot flushes are OK and remind me that the treatment is working, the breast swelling/tenderness, weight gain and loss of libido don’t really bother me! However, the urgency and frequency of urination might need some attention soon.
The oncology appointment was by telephone, it took only 5 minutes. With the lifting of Covid restrictions there is a move back to face-to-face appointments. My next appointment in June has been scheduled as face-to-face.
Oncology appointment earlier this month. PSA 0.03. It had varied between 0.02 and less than 0.01 (undetectable) for the last 4 years. So this is the highest reading for over 4 years. However, my oncologist reassured me that this very small increase is nothing to worry about. I hope she is correct. Meds unchanged. Next appointment in September.
Since my previous update I have had episodes of blood in my urine. As a result I was sent for a cystoscopy followed by a urinary tract CT scan. These were clear. I had a short course of antibiotics. I have not had blood in my urine for a couple of months. I also had a DEXA scan which shows I have osteopenia, but I am not feeling any effects of this.
As a result of my participation in prostate cancer support groups, I now understand that I am castrate sensitive (at least for the time being) which explains how I have been able to stay fairly well for the last 6 years. Apparently, at some point, prostate cancer patients become ‘castrate resistant’ (which means the hormone medication stops working and other treatments have to be tried).
Overall, I feel pretty good. The fatigue and lack of energy are annoying, the hot flushes are OK and remind me that the treatment is working, the breast swelling/tenderness, weight gain and loss of libido don’t really bother me! However, the urgency and frequency of urination might need some attention soon.
My main worry at the moment is that my 42-year-old daughter is suffering a recurrence of the breast cancer that she had in 2011. Following chemotherapy, a lumpectomy and radiotherapy we thought she was clear. She is undergoing further chemotherapy plus immunotherapy at the moment. I mentioned this to my oncologist because I wondered if the BRCA gene runs in our family. My oncologist suggested that this should be followed up by my daughter through her oncologist, which she is doing. It seems that cancer recurrence rates could be as high as 30% at the moment.
Oncology appointment last week. PSA unchanged at 0.03. The appointment was a short telephone call. It was due to be face to face. Unfortunately, the time clashed with my wife's neurology appointment following her Parkinson's diagnosis. I continue to be more worried about my wife's health, and that of our 42-year-old daughter who is undergoing chemotherapy due to a recurrence of the breast cancer, than my own situation. I feel reasonably OK at the moment, but hardly full of the joys of spring. My medication continues unchanged, with my next oncology appointment in the first week of December.
Michael's e-mail address is: mike.degaute AT gmail.com (replace "AT" with "@")
