My husband's prostate journey

Thank you Dafna for your reply, it was what I was needing to hear, we are still waiting on a date for scans, and of course I got in touch with Dr Google and now wish I hadn't it was all worst cases, so have decided to stop chatting with him. Yes George is very laid back and this helped him through his non hodgins from which he is in full remission, and he will be the same with this one, but yes we are going out for lunch tomorrow with family so looking forward to that, we live in Edinburgh so good weather is scarce on the ground, but we will enjoy ourselves.  Will keep you up to date on how he gets on.

Enjoy your weekend

Linda

Hi Linda, I am so sorry to hear your news, I cannot imagine what you are both going through, I only hope your are able to support each other once again and girl i say, go our there and howl at the moon, cry you heart out and do all those crazy things we do when we feel we can't do, the things we have no power over........I replied because I feel the same way, because you will understand my thoughts and feeling and maybe somehow we share some kind of common ground. You see, today my husband received bad news and truly I don't know where he stands because it's been mixed messaged.......and  even though I have a healthcare background I am bewildered. We turned up for his catheter to be removed, he went into retention 2 weeks ago tomorrow (Saturday) and obviously because he could not pass urine he was admitted to hospital. Now this is a man that never visits the doctor and the last time he was in hospital he was 10 years old and he had his appendix removed....he is now 57!!!!  So, they did bloods and prostate exam and his prostate is enlarged, ok thought both of us, this may be something or it may be nothing. So, during hospital rounds on Monday my husband was told be needed to repeat bloods and would stay in hospital for MEi and ultrasound. They did the blood and ultrasound and on Tuesday they allowed him to come home. He was told he was being investigated for prostate cancer but it could be something or nothing. My husband is not like me, he did not question the consultant because is is very much a glass half full person, he also did not think that there are questions he should have or could have asked....he assumed if there was anything to say he would have been told. He came home, catheter insitu! During that week he received notification of appointments for his MRI on Monday next week (brought forward from, 22nd April) and catheter removal (if possible) for today, also on Saturday evening a doctor from the urology department phoned his to ask him to go into the SAU on Monday morning, this week to get bloods taken and he would discuss more about his case.   He was positive saying well, 'it is what it is.' He got his bloods taken on that day and was just told his kidneys were functioning better,nothing more. Today we turned up at his appointment only to be told his urology consultant had attempted to ring him to cancel his appointment and would schedule an appointment for a meeting after all his results had been analysed,!!!!!! We knew nothing of this, he had not received emails or missed calls. The outcome is, his catheter has not being removed and there are no plans to do so, my husband really did not know what to say or ask.......me I asked 'what are his PSA levels and what are you saying?'  The nurse said 'please let me phone your consultant before I say anything.'.....she returned and said, 'I have your last PSA level, it was 130 and your consultant wants you to start hormone therapy tomorrow' for which she wrote a prescription....she then said he would receive hormone injections every three months, but she 'was not in a position to say more,' he needed to have more bloods done on Monday and have his MRI....I said, 'so this is prostate cancer.' She replied, 'I cannot say that, you consultant will discuss that at your meeting when your test results are in.'  My husband was devastated and so am I............we feel that we are in no man's land, especially him, because we cannot resign ourselves to the fact that we were in that hospital on Monday, speaking to a urologist who said none of this,and he had just received the results of the latest PSA!!!! We had understood that no firm diagnosis could be made from the tests that had been carried out, and only when they received the body scan results and MRI, (he only had his bone and body scan done yesterday) would they have a clear picture!  As for me, I just feel that, as a physiologist (my profession), had I been present during ward rounds when he was in hospital, I would have asked more questions, and I really should have asked more questions on Monday when the bloods came back,but no one even suggested that there are anything more they could tell us......I am so sad for him..........it's heartbreaking isn't it?  Sorry, I didn't mean to take away the impact of your husbands position, I just feel so bereft by this......that is why I am saying, do what you have to to take away your feeling of disbelief.....because that is all we can to......suppress our deepest fears and anger, so that we can support the most important people in our life........:Linda, I am so sorry, I really do hope better news will come your way. Kind Regards.  

I hope you don't mind my asking a few questions,my husband has receive a diagnosis of sorts, he still has to have an MRI on Monday, he has had his bone scan and a couple of PSAs. He is around your age, he will be 58 in October......he went into urine retention 2 weeks ago, this led to a prostate examination, ultrasound and bloods.......a bone/whole body scan yesterday and an MRI on Monday, 22nd, Today, 19th, there had been plans to 'trial' remove his catheter, we arrived at the appointment to be told that it had been cancelled at the request of his consultant, she would wait for the result of his scans and discuss his prognosis as soon as possible, after she had reviewed his results. We were told she had tried to call him and emailed him......he has received nothing......the urology nurse read the emails herself and said she would tell us what she could......which was about the review/prognosis, she also asked what meds my husband was taking, we told her and she said....'please hold on. I will call Mrs. Harris, your consultant.'  I asked if she could also tell us the results from my husband's last PSA. because he had never received any results.......She returned and said, ' Mrs, Harris, wants you to stop your meds and begin hormone therapy from tomorrow and every 3 months you will receive injections to your stomach, I cannot say more.' I then ask, 'what are you saying?' She replied, I cannot say more, that is for your consultant to address when all of your results are in.'  She then gave the results of last Mondays PSA which was 130..... I then said ' are you suggesting this is prostate cancer, she replied, I cannot say that, your husbands consultant will address that?'   So, we feel we are in a no man's land and, truly, we both believed diagnosis was only given once all scans etc had been scrutinised.......is that so, or are we missing something and what should we be asking and expecting?   

Hello MillieM  - A warm welcome to the online Prostate Community.

I am so sorry to read your post and of your present situation. Your husband is just like I was 28 months ago - not wanting to know what the score is.

You appear to have had "shabby" treatment from the NHS however I can confirm that the good news (I know it's not much) is that your husband has already started treatment.

The Hormone Therapy will stop your husband producing testosterone - this is the food the Prostate Cancer thrives on - the cancer growth and any spread will be stopped almost right away and whilst he is undergoing tests etc the cancer is no longer growing.

I am not sure of your husband's diagnosis - that will come later and I can appreciate the shock and utter desperation you have at this moment in time. If you take a breath, sit down and click on my avatar, you will see 28 months ago I was in the same boat - PSA of 182 and just being fitted with an indwelling catheter - 28 months down the line - I am still on my journey - I have another 8 months on hormone therapy - but I am on a curative pathway.

The Community is here for you and your husband - ask anything you will get answers - we have all "been there - done that" and we are with you here - it's OUR Community and you are both very welcome members.

If I can do anything else for you please let me know - I wish you all the best.

Kind regards - Brian.

Oh my thankyou so much Brian, you will never know how much I appreciate your reaching out so quickly. Believe it or not I am a physiologist by profession, but nothing prepared me for this, I was sort of tongue tied today.........I so appreciate your kindness and I will read your journey.....Many thanks.

It's no problem - I was in the same boat so it's a good comparison. I was just running through the various threads before bed so if you do have any questions for me I will get back to you tomorrow..

I do hope you sleep well tonight.

Best wishes - Brian,

Hello Millie Millward and welcome, sadly the poor experiences at your hospital are not unusual, you really don't need it, especially at such a difficult and emotional time for you both, I was diagnosed 2 years ago age 57 by my GP, DRE and bloods, though needed tests to get a complete picture to find the best course of treatment, and was put HT pills, Bicalutamide for 28 days, then HT injections prostap in stomach 1>3 monthly. Millie, I hope it's ok to call you Milly, you have not mentioned having a prostate biopsy, which is the most important test for anyone with suspected prostate cancer and has the biggest influence on treatment. I understand the emotional rollercoaster you are on, but things will get a little easier, best wishes.

Eddie

Hi Millie sorry to read your story, I hope you get some positive news soon.  We have a fantastic team here in Edinburgh, we can ask them anything, yes we are both very upset but George will just get on with it as he always has.  I lay awake at night worrying and he snores all night,  we have both resigned ourselves to hearing that his cancer has mat outside the prostate, but now we just wait.  Please keep asking questions, I always ask the questions no matter how silly they sound.  I know how you are feeling and I feel the same but after reading the stories here I feel much more confident for whatever lies ahead, so look after yourself and try to be positive Kind Regards

Hi eddiel

Men Gleason score 7 are considered to be at intermediate risk in clinical practice; 3+4 might even be candidates for active surveillance. However, if validated on diagnostic prostate needle-biopsies, cribriform growth should mean a robust treatment programme.  Please note that many patients aren’t even told that they have cribriform growth patterns, as 50-80% of 4+3 patients have it.  Many of these would have been formerly classified as 3+3 =6 but the cribriform converts those to Gleason 7, as per histology guidelines.   AW

Thank you Hibbie, I really appreciate your comment, we are in limbo here and my husband, even though he has been given Bicalutamide, is in denial, be has not mentioned anything that was discussed on Friday, not to me or anyone else.  The only person he has relayed what was said to is our son. but did not mention cancer. he just said he was under investigation for cancer. I know why, because the word was not uttered by the urology nurse, therefore, it cannot be fact, it must be proven!!!! Maybe that's his coping mechanism at the moment, but not for me, I am so absolutely heartbroken...I am finding it very difficult to sit and behave as if everything is normal and life is rosy!!!!  think my clinical training is actually a curse, because I understand way too much about what is happening and find it difficult to separate what I know, from what is happening right now. I don't know if that even makes sense to anyone I say that to. I think that is why I am so quiet at appointments, at this stage it's more important that my husband leads the questions, afterall it's his body and his right to express how he feels and what he thinks in his own way. Me,I just want to jump in and ask all the questions that I know will help him understand where this is heading, but I know he won't, he has no knowledge of how the body works or altered states of health and furthermore, he feels fine other than the problems with the catheter. This is a man that has been in hospital once in his life, at the age of 10yrs old he had his appendix removed, until 2 weeks ago he hadn't even been to see a doctor for around 16 years. His attitude has always been, 'what I do not know cannot hurt me.' His attitude is now, 'until I am told, there is nothing wrong with me.' He knows that I do not think of health in that way and do not sit back and let things happen, and I respect that, at this stage, he would prefer that I didn't ask too many questions.....so, out of respect I will sit back and give him time to process what he has been told....and just wait for his meeting with his consultant, then I will ask all the questions he will not formulate himself! He will talk to me eventually, he has to, he runs our family business and that needs addressing too. Trust me, I will be there 100% for him, no matter what!!!  Ok, enough about us.......From me to you.....take care of yourself, because I'm sure you are the rock George is clinging to in whatever way he expresses his feelings.... I wish you both well and genuinely don't know how you are able to weather this storm, you must have an incredible bond. Isn't it strange how we find our strength out of the blue....and in different things, mine is from my faith, my husband, my son and my beautiful Shar Pei, Blue.....they keep my world wonderful and my feet on the ground.I hope you have similar in your world........my heartfelt warm regards.