Hi guys,
I thought it better to continue with my tome here because many threads were intertwined and it was getting a little confusing...also, some of the wonderful people commenting really deserved the attention of Macmillan Champions moreso than me!
So, firstly thankyou to everyone that has commented on my husband's story...you are stars and I hope you will read this and it will demonstrate that standing up for each other and participating in forums such as this really helps inspire other people..... Our story in short,
My husband was admitted to hospital, via A&E presenting with urine retention on 6th April, a catheter was fitted, (it is still in situ) and a DRE was performed and an ultrasound. The consultant he saw said his prostate was very enlarged and it may be a sign of prostate cancer. Nothing more was said.He remained in hospital for 3 days and came home. He heard nothing more from the hospital until Saturday 13th April at 7.30pm when he was asked to go to SAU for blood tests, the only news that came from that visit was that his kidney function had improved. My husband has not been in hospital before other than as a 10year old boy, he has not visited a doctor in 16years, therefore, he had no idea what questions to ask. I was with him but knowing he is a quiet, private man I chose to remain quiet, we understand that at that time his PSA score was 130 (I found this out later, because I asked). Now we move to the step that brought me to this amazing site.....By Friday 19th April, my husband had yet to meet with his consultant, in fact he did not know which consultant was responsible for his care, all that had happened to that day was, he had had 4 blood tests, 1 ultrasound, 1DRE. So, on 19th April, he turned up to an appointment to have a trial catheter removal, only to be told the appointment had been cancelled at the behest of his consultant, and emails to that effect had, apparently, been sent to him, plus his consultant had tried to phone him. Neither had occurred, and the emails have yet to surface. On 18th April, the day before he had a bone/whole body scan and the following Monday, 22nd he had an MRI. However, on 19th, without any explantion as to why, my husband was prescribed hormone therapy Bicalutamide, long story short, upon arrival at the Urology centre, he was told his appointment was cancelled, a nurse read through the emails (he had never received) and decided she should speak to him because he said he had not been called by the consultant and received no emails......she told he that his catheter would not be removed in the foreseeable future and his medication was to be changed immediately, however she could do nothing at the moment. I then asked how that could be, we were there and something needed to be done.....she agreed to phone his consultant, (now we had her name)....the upshot was the nurse wrote a prescription for the hormone thereapy.....with no explanation why it was being given, I have medical training and am aware of altered states of health and the drugs used for many conditions, I therefore asked, 'so without further tests are you suggesting my husband has prostate cancer, 'she replied 'I and not authorised to tell you anything more that I have said.' My husband left that office believing he was still under investigation but probably for an enlarged prostate, I knew differently but he did not want to hear that.....he knows nothing of my world (job) and he chooses not to....he did not read the insert for the medication, which clearly states, 'for the treatment of postate surgical removal or advanced prostate cancer.' My husband remained in denial,me, I know NICE and NHS protocol and I know that what happened should never have happened. On Tuesday afternoon I called the consultant's secretary and asked why my husband had been prescribed cancer medication when no one had actually face-to face diagnosed cancer?
Yesterday at 11am, the consultants secretary phoned to invite my husband to meet with his consultant and urology lead nurse to discuss his results and care today, 24th. Today, the consultant appologised for the failure of the department and confirmed that my husband did indeed have prostate cancer and she is 99.9% certain that it has metastasised to the lymph nodes and bones. She offered his an appointment at 2pm today to have his biopsy, which he has done, in total 30 and he will have a CT within 7 days.
Me, I am not surprised, it is what I expected.....otherwise there was no reason to prescribe Bicalutamide......I suppose I just want to say to everyone that has taken the time to support me.....thank you, you are indeed amazing because you listened to me, you care......from me to anyone reading this, just be there for your loved one, know that you can help, you can support in so many ways, but most of all, know that you are entitle to question your partner's care. No, you are not entitled to know the ins and outs if you partner has not given consent, but you are entitle to ask...WHY or WHYNOT!!!!
I am hoping this makes sense because it is a rush job.....I just wanted to say thankyou everyone.....you are warriors and you deserve recognition.
Hello Again Millie (MillieM)
Well that's amazing that the NHS can pull it's finger out when it wants to - at least you are now on the formal pathway and you have a little bit less to chase up.
I am so sorry to find your husband on the Advanced Prostate Cancer journey - there are many Community members on the same or similar pathway and the bond holding them together - Prostate Cancer - is strong and the support is incredible. I can't remember on the old thread if I gave you the following links but here they are-
https://shop.prostatecanceruk.org/our-publications/all-publications/advanced-prostate-cancer
If I can do anything else for you please let me know.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi AW
It's not in my profile but I too was placed on Bicalutamide whilst an in patient in hospital a good two weeks before my full diagnosis at the MDT meeting. I was told by the Consultant at my bedside I had Prostate Cancer and they were starting me on the cancer pathway that day as my original PSA was 182.
The thought then was "Advanced PCa" because of the high PSA but starting treatment then I am a "lucky boy" as the little blighters had only got to my pelvic lymph nodes on their "walkabout". I am forever thankful treatment started when it did.
Oh by the way AW have you missed your vocation?
I imagine that most urology departments are working like one armed wallpaper hangers as they deal with a tsunami of prostate cancer patients. AW
Surely you should be on the stage !! 
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Best wishes - Brian 
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
