My husband's prostate journey

Hi AW I wasn't  told there were cribriform patterns present or intraductal markers either after my biopsy June 2022, then after my TURP in February 2023 when the shavings were analysed and showed blear progression was still not told. Only found out through requesting my hospital notes, PS the number of things they don't tell you about is amazing/worrying, I would recommend everyone asks for theirs. How are you feeling, are you getting close to full fitness and enjoying being back at work in the fresh air and hopefully sunshine, best wishes.

Eddie

Hi Eddie,  that doesn’t surprise me at all - but then I think that most men would prefer it that way.   It won’t surprise you that I took screenshots of the consultant’s notes (after requesting permission) and also screenshots of my scans! I also asked for a print out of the MDT discussion- where I found reference to cribriform and AIP (both of which are relatively common in Grade 4 PCa). They are mentioned to sway people away from active surveillance. 
9 weeks since my radiotherapy ended and I feel great. GI (occasional wind & the odd rumble, but motions normal - once in the morning) and GU (up once or twice in the night but no urgency - just comfort and to aid a longer sleep - averaging 8 hours) side effects are minimal and do not affect my quality of life. No blood showing or any sign of radiation proctitis- so fingers crossed, but it’s early days.  Staying on HT (decapeptyl) for now. I’ve done 7 months so far and my consultant and I will review things in October. My gut feel is that I will stop after 18 months, just to make it very difficult if there an any micromets outside the pelvic area to survive. 

Next weekend is our daughter’s wedding then Mrs AW and I are recommencing our mountain guiding job - 2 weeks in Menorca.  We’re booked to lead there, and we have Bavaria, Austria , Dolomites and Slovenia lined up till September.  Can’t wait to get back to it.     AW

Hi Hibbie.

Good afternoon and welcome to the prostate club that nobody wants to be in but don't worry we are a good bunch really.

I am sorry to hear that your husbands PSA has gone through the roof!!

Yes we as a family were in a similar place last June when by mistake we found out that I had Terminal Prostate Cancer with a PSA off 1000+.

Since then I was put onto Hormone Therapy (tablets and injections) and by luck my PSA is now down to 0.2 which is crazy.

I will keep my fingers and toes crossed for you both but please try not to worry too much & also try to stay strong???

Prostate Worrier.

Hi and thank you for your reply, George has started hormone treatment, he is on tablets and will start injections soon, it was such a shock, he only went into remission from Non Hodgins Lymphoma last summer and then a few months down the line he discovered he had PC so he has been through the wringer, but he is very laid back and really sailed through the treatment, so he will probably be the same with this.  Every reply I've had on this page has been so encouraging and positive and I'm trying to be calm but It is hard sometimes, it's like a black cloud hanging over us, hope he will not be waiting to long for scans and he knows where he stands.  He sleeps at night and I'm wide awake, so fingers crossed for him and the road ahead, will keep everyone up to date when we know more,brake care of yourself 

Linda

Hi Hibbie.

No probs my friend it's my pleasure.

Yes the Hormone Therapy will put the Cancer into hibernation.

This should drop the PSA Number straight away as mine was an incredible drop.

I have got my next appointment with my consultant tomorrow to go through my bloods taken Friday.

So hopefully things will keep stable fingers and toes crossed.

I do hope that you both get the scans asap!!!!

Please please let us know how things go??

Prostate Worrier.

That all sounds amazing AW, I'm so happy for you and your family, please give my congratulations to the wonderful couple, hope they have a perfect day, as i hope you do, though don't forget your tissues. take care.

Eddie

Good luck tomorrow, will let you know how things go

Linda

Hi Eddie, so sorry for the delay, I thought I had replied...I am grateful for you comment, your support is so appreciated...FYI, my husband is due to have his MRi tomorrow. As soon as the results from his bone scan are back we will meet with his consultant to discuss the direction of his treatment. He is saying nothing himself, he hasn't mentioned what occurred on Friday, mainly because the word cancer was never actually said by the lead urology nurse, so in his mind he is fine!!!! I outright asked her if it was suspected prostate cancer, she 'obviously' could not say that, and I know why!!!!! Me, well, sadly, my professional background is not serving me well at the moment, It really just hampers my feelings because I want to ask so many questions and there is no one around to answer, and I know it is not the right time for my husband to hear the answers. One of them is, why was he put in the position that he had to find out from a lead urology nurse that he was to start hormone treatment in tablet form and them receive further treatment in the form of injections, for a disease no one has yet told him he has. Furthermore, he was given a booklet on 'Prostate Cancer, now you've been diagnosed,' but no one had actually sat with him and explained that he had cancer......it is so shoddy!!!!  I did not challenge what occurred on Friday, it was the wrong time, but I will be lodging a complaint with PALS as soon as it is pertinent to do so.Right now, I just keep calm and  quiet, I do not express my true feelings and try not to become emotional in front of him. I will support him to the hilt and I certainly will not allow anyone to brush him aside again. How can that happen with a man who is undergoing checks for cancer, because that is, in my opinion, what happened, he was brushed off? Does that happen frequently? Furthermore,that nurse should not have been placed in the position where she had to speak to my husband when she did not have the authority to actually tell him what his consultant believed. My husband turned up at a hospital for an appointment that had been cancelled only to learn that he is to be given hormone treatment and no clear answers as to why!!!!! He is not the sort of man that thinks of his health, he trusts what doctors say and he takes them at their word....and that is the point, the C word was not mentioned on that day!  Fortunately, me, I knew what she was telling him, and I know why she could not say the C word, but that actually makes what happened worse! I held my tongue, wrong time, wrong person, wrong place, but I will complain. that shouldn't happen to anyone!I also know he should have been given results from his kidney function and PSAs without having to ask, even if they meant nothing to him. I had to ask for those, that tells me that his doctors perhaps though he didn't need them and they would mean nothing, but all of us have a right to our own information, even if it means nothing to us!!! Maybe that is just my background talking....I work with this sort of thing daily and see many people with concerns about their treatment in healthcare facilities. Ok...sorry I do go off in a tangent, always the people champion....lol Please believe me, I respect my husband and his quiet manner and resolve, therefore, I will keep quiet and behave perfectly, but I will fill in the gaps and speak up at his meeting with his consultant and anywhere else where he needs a voice or an advocate. I know I will have to have all the questions formulated. because he is in denial and will not want to bother doctors, and as you know, for the patient things become a blur and they need someone with a clear head and thought process. Trust me,my husband has no experience of the healthcare system other than having his appendix out at the age of 10, as I said before, he has never been in hospital since and hasn't even visited his doctor since 2008, and that was at my insistence, so he needs someone to gen him up on what to expect when he is ready. I just wish things had taken a different turn on Friday, because to have a nurse sit there and say, we can't do what you came here for because your consultant has changed your treatment, and then write out a prescription for something that he knows nothing about, was absolutely soul destroying for him. He was visibly shell shocked and didn't know what the hell she was saying when she outright told him, she could not give him answers to any questions such as 'do I have cancer?' Therefore,until he sees his consultant he will continue to think he is clear, in his mind that is what he believes and I must respect that..... I just can't believe that his consultant claims she tried to phone him, she couldn't have, his phone is like a piece of NASA technology, and it did not log a missed call. The emails they claim to have sent are nowhere to be found.....so we have no idea what they say or what she wanted to tell him. Sorry, I probably sound demented, but please understand, I work in a field where I see a lot of this kind of thing and I always do my best to advocate for people who are wronged.....never did I believe it would be my husband that this happened to!!!! Once again, thankyou, I seriously appreciate your support and wish you well. Warm regards. Millie

Exactly, the amount of information that is disregarded and withheld by consultants is remarkable. Everyone should ask for a transcript of their diagnosis from each consultation,especially if one must provide evidence for benefits or PIP. Sadly, it is necessary to ask for transcripts because healthcare professionals will never divulge that they are available and people have a right to their own information. The other way to request information is via the consultants secretary, they are usually very helpful.  It is actually a legal requirement that access to all medical documentation is available to patients, we are entitled to a full access unless it is deemed to cause significant physical or mental harm to the patient..  It really annoys me when this is not explained to the patient....it would be extremely useful for many reasons, especially benefits and future clinical appointments.

Hi Millie, sadly as you know, your experience at urology was nothing new, poor treatment and a lack of respect and common courtesy are not unusual though i have sympathy for the nurse she shouldn't have been put in that position in the first place. Millie like you i have had some pretty poor treatment and have had to go to PALS and know how important it is to fight your corner, though i know that won't be a problem for you. Best wishes for tomorrow i hope you get your answers and hopefully a little trust back as well, PS you never said if hubby has had or is having a prostate biopsy, take care.

Eddie xx