Following my diagnosis at the end of August last year, the first couple of months were a whirlwind, the next 4 were just frustrating and more recently just waiting for my treatments to resume ( something I'm sure many of you have experienced)
My initial results were PIRADS 5, Gleason 4+5 Staging T1c with PNI on right side. Subsequent MRI/X-rays confirmed lesions on my neck were not cancerous. Because further treatment was not carried out at Kings Mill Hospital, I was transferred to Royal Derby Hospital.
I met my Consultant Mr Singh early in September, we had very open discussions and he explained that due to the aggressive nature of my cancer along with it's size & location, my initial preferences of HIFU and Brachytherapy were not viable. After talking to a few people at local support groups I wasn't too keen of HT/RP, so surgery was agreed, I was quite surprised given my age(67) but Mr Singh felt that I was quite fit & not overweight (!!) he suggested I could probably have Robotic Surgery within the next month.
Surgery took place on October 29th & took just under 7 hours, all went well although because I had low potassium levels & was running a temperature I didn't get home for 4 days. The following week I had my catheter out & all was well with the world.... until about 1am the next morning. I went to the too & all hell broke loose, I couldn't pass any water & I was doubled up in pain.I managed to get back to bed & tried to get some sleep. I gave up at 6am and called the Ward for advice & was told to get straight back to them ASAP. 1 very uncomfortable taxi ride later I was readmitted on to the Ward. After treatment, I was able to per about 3 hours later but I apparently had an infection & again had very low potassium levels and a temperature so I was kept in, this extended to 3 more days, after which it was decided that I may need to have a catheter reinserted, I was taken down to have a camera examination & following this a catheter fitted. I was back on the Ward and had just been given my evening meal when not was taken away from me as another procedure had been arranged for that evening, I believe that was a cystogram followed by another series of tests with contrast dye. Mr Singh came to see me the next morning, apparently there was a small leak in the new bladder joint & it was leaking into my stomach, I would need the catheter in until the urethra/bladder joint was healed which should take about 3 weeks & a further cystography would be arranged for then to check, also about then I would have a meeting with Mr Singh to review the results of my surgery.
I had the cystogram 3 weeks later & there was still a leak so I kept the catheter in & was told that another appointment would be booked in another month. That evening I had a shock when Mr Singh phoned me at home, he was really apologetic that I was having these issues but assured me that they would get it sorted out as quickly as possible. He also confirmed my next meeting with him would be next week on December 5th and I needed a PSA test at my surgery before this.
At that meeting, we discussed the results of my surgery, the tumour was larger and more difficult to get at than originally indicated and following pathology was revised to Stage T3a ( I actually thought he said T3b, but it was later confirmed as T3a) and as prewarned there was no nerve sparing. There was slight escape from the capsule but it was felt it was not significant at this point and as my PSA was undetectable, he wanted to resolve my leak before discussing any further treatment options. The good news was he gave me the OK to start driving again, the bad news was the catheter was in until after the new year ( not really a problem to me)
I actually needed a further 3 months and 2 cystograms before I got the all clear, following that I again had the catheter removed & this time there was no drama afterwards, the real shock was I was totally dry - no incontinence at all. I then had another appointment with Mr Singh who was delighted that I had no incontinence issues & joked that maybe all his patients could have the catheter in longer. My PSA was still undetectable so he deferred any further treatment until there was a rise in PSA, he also arranged an ED referral. I had 1 appointment with my ED nurse & then Covid landed & everything was put on hold. I am now waiting for a Nurse Specialist appointment for my 6 monthly PSA test along with an ED appointment and my now 2 month delayed spinal injections. Frustrating times but could be much worse.
