Update on 2nd PSE

We had the most dreadful time getting through urology - delays, being treated like objects on a conveyer belt, being forgotten in the waiting room , wrong information etc etc. we wrote a formal letter of complaint.

And then…..we were passed on to oncology! There, the service and care was absolutely fantastic.

But, the damage had been done and we had lost all trust in the hospital and monitored and questioned everything to the best of our ability.

it shouldn’t be like this! I agree with you.

By the time we (eventually) got to biopsy we had learned the hard way and that we had to be politely assertive and chase, chase, chase for results, appointments, everything!  

my father always used to say, ‘the NHS buries its mistakes’. Of course, this has two interpretations….

Hi Liz,

Prostap reduces Androgen production and Aberaterone does the same job. There seems to be some overlap in function. Did your oncologist explain that? My PSMA PET Scan confirms that I have CSPC and 3 bone mets and one Lymph node met. I started Zalodex on June 01 ( PSA 85 ) and PSA is down to 3.9 on July 26. My oncologist prescribed Apalutamide as a backup which blocks Androgen receptors of cancer cells from acquiring Testosterone. I have not accepted the offer because I am still hoping that my prostate cancer can be cured by radiotherapy. I need and am waiting for a second opinion. Please comment.

Henry

Hi Henry , absolutely not. . He handed OH a leaflet to read about Aberaterone and it’s been filed unread. OH is rather old fashioned he likes people to speak to him with reasoning, facts and figures. As I’ve said before it was rather this is what you’re having . He did offer to let him think about it . However having waited 122 days to see him how long would he have waited to think about .  We spoke about a second opinion  regarding surgery and the Oncologist said they wouldn’t touch OH  as he has  possible femoral  & inguinal nodes involvement . I butted in saying I was not comfortable that any surgeon THINKS.  He wasn’t too delighted with me as I was doubting a professional . Yes and we all should do such if we have any doubts.  Good luck with your 2nd opinion and keep in touch 

Liz & OH XX

Yeah as deadlines were being missed I sent the chaps secretary an email expressing my concerns ,the email said I was getting concerned about time being taken for tests and I finished email with the sentence. It's good news that the bone scan as come back clear ,and I hope this is still the case when I am finally diagnosed .Words that have come back to haunt me .His reply asked my to kindly be a bit  more patient. .

The specialist nurse encouraged us to contact our government  which I duly undertook .The first minister came back saying contact MacMillan Nurses as an interim while waiting . He also spouted facts and figures . My reply we are talking about humans here not stats . Needless to say he has not replied.  And probably Mal like us patience has disappeared as we were terrified , not eating , sleeping etc. I still don’t sleep well but due to HT OH is fatigued so gets a reasonable sleep. 
xx

Hi Liz

I am so sorry to hear that you are having such a hard time with mixed messages... that can't be easy at all.  To be able to feel a bit more comfortable and then to get all the pieces tossed in the air again is just rotten.

As you know, we saw the oncologist for the first time on Friday. To be honest, I expected a lot of sympathy from him and a full explanation of the ins and outs of every single little detail - we didn't get that but I did get the feeling that there was no rush.

I did ask about radium and when it was an option, but he said we are not at the stage of thinking about that yet. I asked about radium as he mentioned it as one of 3 options to back up the prostap but when he heard OH has ulcers, his words were 'well that makes the choice easy then, because you.need to take steroids with chemo and aberitirone... process of elimination then left us with the Enzalutamide.

I came away unsettled but having had time to think about it now, I am going to follow OH's lead...he caught the words "remission " and "works for many years".  On that basis, I am going to do the same.

I am a total control freak and when we first got the diagnosis, I spiralled hugely with what I now recognise as being anticipatory grief.  That has settled down now and there are now many days when I don't think I am going to lose him ALL day, which I take as a win.

We are all very different and I really hope that you get a definitive answer that you can believe and helps you move on towards a plan... you will at least be sure of what you are facing then and can get down to fighting this.

Hugs

Amanda x

Thank you Amanda , you really hit it on the head . I am too a control freak . Think it was working life as everything had to be so accurate . If the nurse had not mentioned or in fact written down our choices (which he has now denied ) We would possible have taken the news better .OH is doing ok on the Prostap , Aberaterone ,steroid, tamsulosin and vitamins.  He’s walking around 10 miles a day but totally exhausted and having a nap some days which is p… ing him off .

its me that’s struggling and again you are right . Terrified of the unknown . 

hugs Amanda 

xx

I think you and I think alike, Amanda. I am a control freak and anticipatory grief still overwhelms me with panic at times.

And I, and I

We are all human and it is awful being so powerless and out of control in respect to the crux of it...we don't want to lose them!

Xx