I'm so sorry that I haven't posted anything on here for some time. I've suffered a couple of major setbacks, which have so affected my moral that I didn't feel I could post anything positive
Just to remind you - I finally got a diagnosis of prostate cancer, Gleason 3+4, confined to prostate T2 stage last February. Prostatectomy was ruled out because of a right common iliac artery aneurysm, which showed up as an unexpected finding on the MRI prostate scan I had in the run up to the diagnosis. I was put on 150mg Bicalutamide daily
I saw an oncologist in Feb 2022, who told me that there was a discrepancy between the MRI scan (showed possible spread into the right seminal vesicle) and the Pet CT scan (no evidence of spread outside the prostate). She said she wanted to treat the cancer as T3 stage, but that she would have the imaging reviewed by the radiologists. There was then a long gap before I next saw an oncologist
What happened next really affected me a lot more than the cancer diagnosis. In March last year I decided to have the aneurysm treated by an EVAR (endovascular aneurysm repair) procedure. This involved cutting off the blood supply to the right internal iliac artery.
The next day on the ward, the vascular team assured me that all went well and they could see no reason why I could not now have a prostatectomy. I was quite positive at that point. There was some communication between vascular and urology and I was granted a consultation with one of the urology surgeons a few weeks after
The next day I was sent home and it was immediately apparent that the procedure had not gone to plan. I could only walk short distances before pulling up with severe cramps. The vascular doctors assured me that this was expected and would improve as co-lateral circulation took over from the embolised right internal iliac artery
While all this was going on, I went to see a Urology surgeon in clinic late March last year, who, I'm afraid, did not hide his irritation that I had been granted the consultation (I'm very busy, why are you here?). He said that he would not operate on anyone with stent grafts (part of the EVAR procedure) and proceeded to direct me to the specialist nurses for an appt for my first Zodalex Implant injection (I'd been on Bicalutamide 150mg daily before that). I got my first implant on 6th April, 2021.
I'm not sure how I got through the following months, but the promised improvement in mobility did not happen. I went to casualty 3 times to try to get through to someone that something was wrong. On each occasion I was told that it was early days and I needed to be patient.
I won't bore you with the details, but eventually I had a CT and doppler ultrasound, which revealed blood clots in the right and left "limbs" of the EVAR repair - the clots had virtually blocked off the blood supply to my legs (60% stenosis). I had a re-intervention on 15th August (angioplasty) to free up blood flow through the EVAR. The reintervention seems to have worked - improved mobility since then. I was put on Warfarin to try to prevent clot formation.
While all this was going on, news from oncology had stalled and, in fact, I had to wait until 7 June 2021 for a face to face consultation. The consultant I saw back in February had a heavy workload, so I was switched to another doctor
PSA levels had dropped from 13.2 (November 2021) to 1.6. Urine flow rate was better with only 81ml retained (235 ml before hormone treatment). There was still no news as to whether I would be treated as T2 (confined to prostate) or T3 (spread to seminal vesicles).
I saw him again on 23th August 2022. I was informed that the Urology MDM had noted altered signal intensity extending in the seminal vesicles on the MRI (Nov 2021), but there was no correlating lesion on the PET CT scan (Jan 2022). Given the young age and concerns of the MRI, the consensus was that we treat him as T3b cancer rather than T2. PSA had risen slightly from 1.65 to 1.78. He prescribed 50mg Bicalutamide daily (I had come off that since the 1st Zodalex implant injection), to take, in addition to Zodalex, until after completion of 37 fractions of Radiotherapy (I will continue on Zodlex until March 2025 - 3 years). He was concerned about the anti-coagulants I'm on (Clopidogrel/ Warfarin) as that can increase the risk of rectal bleeding due to RT, so he wanted me to have a Spacer fitted before starting RT. He said he would write to the vascular team to see if I can come off Warfarin to allow for the Spacer insertion.
Next appointment was 18th October 2022. The PSA had dropped to 0.21, Testosterone 0.6 on a combination of Zodalex and Bicalutimide. He told me that because I was on anti-coagulants, to reduce the risk of bleeding, they had discussed whether I should have revert to 60 Gy in 20 fractions (treat the prostate gland alone).
A telephone consultation on 6th December 2022 revealed that the PSA had dipped to 0.07, Testosterone 0.7. I was on the waiting list for a Spacer (probably for Jan or Feb 2023). The plan had changed again to 37 fractions of RT. He'd written to the vascular consultant re: anticoagulation meds during Spacer insertion, but had not heard back.
I got an unexpected call from the oncologist sometime in January 2023 to tell me that the Spacer insertion had been provisionally booked for the 10th Feb, but did not hear anything further.
Last contact was another Telephone consultation on 21st February to tell me that the plan was still to get the Spacer inserted before 37 fractions of RT to start four to six weeks after that.
So, that's where I am. Nearly April and still waiting for RT. August this year it will be 2 years since I alerted my GP to urinary tract issues, which led eventually to the cancer diagnosis. I've been on HT for a year now. Has anyone else had to wait so long for RT? I appreciate the anticoagulants are a complicating factor, but, I'd like to get RT started and get it over with.