Information please

Hi, sorry to hear.

Impossible to say really about the PSA without a MRI at the least. It is a bit high but the Mri will tell u a lot more, then a Gleeson later. Psa is high but not very high, there are plenty of treatments out there for him.

Come back when u have MRI report, we'll be able to give further advice then 

Good luck 

Steve 

Thank you Steve, you've given me what i needed, positivity and hope. I will come back as soon as we know.

Many thanks Lorraine

Hi, we have just come to the end of the diagnosis pathway . My husband’s journey was: high PSA, second blood test result similar; mri; biopsy; bone scan; start hormone therapy immediately with radiotherapy in about 3 months.  We had a terrible time with our hospital - they wanted to delay appointments all along the way - one appointment postponed for 4 months at short notice because the clinician had decided he wanted a day off! My husband was wound up and wounded with the tests and the bad news that just kept on coming so I had to do the ‘fighting’ to get the care he needed sooner rather than later. In the midst of the nightmare I heard on the radio that the nhs is a 2 tier system and that those who shout the loudest get the care they need - sad but true. The most annoying thing was that he was treated as a’prostate’ on a conveyer belt and not a human being a lot of the time.  This illness affects both people in a partnership and that is not sufficiently recognised either. A big problem for me has been my own emotional response when I know I have to be strong for my husband. I have felt so very angry with the hospital and yet, when we encountered some aspects of incredible kindness I am reduced to tears.  

i do wish you and your partner all the very best and hope that you have some positive experiences and some positive news. As the partner in all this, can I advise that you need to monitor the diagnostic pathway appointments and ensure no unreasonable delays are happening. You might like to quote the Governments targets for England. The two week wait for cancer referrals ie your partner should be seen by a consultant ( or registrar) within two weeks of your GP referral for suspected cancer The 62 week Referal To Treatment target - ie from the date of your GP’sreferral to the commencement of the first treatment for cancer should be no more than 62 days. We finally got the first treatment on day 88!  A lot of hospitals are not achieving these targets.

I was diagnosed in 2018 long before any COVID delays and it was over 6 months from first referral by the GP to starting treatment!

Thank you so much for your in-depth and honest reply of your journey so far. Like you I will closely monitor the treatment situation and I am also happy to push for the treatment my partner deserves. All of this information is now in my folder. I know this folder will be huge by the time our first appointment arrives.. We are fortunate to live near Cambridge and I know there will be good facilities at Addenbrook's hospital,  I'm hoping we will be able to visit them and get help as well as at our local smaller hospital. I am dreading the next few months already, in the past few days I've gone from complete paralysing fear to driven determination to find answers and I am worn out already. I admire your strength to keep going in what sounds like a daily struggle to get what your husband needs.  I thank God that we are not starting this in Covid lockdown, my heart goes out to everyone that suffered because of it.

 If you think of anything more that can help me with please Pm me. I would like to know your opinion on the high PSA and what your husbands was at the start of your pathway, also if you feel that you can share this information, how he is now?.

Wishing you well L

I've read your profile and its great to see a positive outcome for you. My partner is early 50's, fit and active also. A PSA of 115 scares me. I'm hoping for a quick first appointment. it's supposed to be in less than two weeks  but  everyday feels like a year to me so it can't come soon enough. Many thanks for sharing your story with me.

BW There's a Maggie's Centre at Addenbrookes hospital. Drop in next time you are there or give them a call. They were a great help to me and my wife when I was being treated (in Glasgow). You can also call the Macmillan nurses on here or the Prostate Cancer UK nurses both of whom are very helpful.

Thank you for your lovely comments.  I hope you receive the timely care for both of you.  The hospitals need to understand that prostate cancer is an illness that affects partners too.  Please do make sure you push for timely investigations - from our experience this is absolutely essential as the ‘system’ wants to have weeks between each step. Although I understand that most prostate cancers spread slowly, the waiting between these delays is excruciatingly painful in the stress levels.

you ask for other ‘tips’ Here they are:

1. Try to find out if you have a prostate cancer specialist nurse team. They have been fantastic in providing support, information and hurrying the appointments along. They are the people that have treated us as human beings and with kindness, patience and information.

2. Try to find out the phone number of your urology service manager or appointment making team.  ( I got the number from the hospital trust Patient Information and Liaison Team - PILS or Elsewhere called Patient Advisory Liaison Team- PALS).  Then, for each test, call them and tell them you are prepared ( if you are, of course) to take a short notice appointment. We did this and both biopsy and bone scan were done within 3 days instead of the quoted 2-3 weeks between each.

3. be prepared to make a formal complaint if things go wrong. We did this when, after the MRI scan the hospital postponed the follow up appointment from September to December. When I challenged it they told me that when the clinician decided to take the day off, non medically trained and not medically supervised coordinators just made the next available appointment. This is a patient safety incident, as far as I am concerned , when we are talking about cancer. 

4. bang on an on about government targets.  If nothing else it shows that you know what care they are supposed to be giving you, that you are informed and prepared to fight.

5. keep a diary of every interaction you have with the hospital, your GP etc. record the date, time, name and contact details of who you speak to. As you progress through all the tests this will become increasingly important and very relevant to all of the above! So much is happening that it all blurs into one big nightmare. The diary gives you a sense of control also.

I really hope my approach helps you. Some may argue that this is too aggressive but we are literally fighting for our husbands’ health and wellbeing. 

the prostate nurses have invited both of us to a local prostate cancer support group which meets monthly. We intend to go along to our first meeting in November. We think we both need support and the ability to talk to people further along this journey

finally, you ask what my husbands PSA was. I don’t have enough medical knowledge to be able to say whether or not a higher or lower ( but still raised) PSA is indicative of a more/ less aggressive cancer, I’m afraid. Perhaps somebody else might be able to tell you?  So, I’m reluctant to cause anyone extra anxieties  but the prostate cancer nurse did tell us that a lot of men present with their PSAs ‘in the hundreds’.

Im really sorry, I don’t know how to PM you but if you know how to do it, then I am happy for you to contact me.

I hope this answers your questions and helps you both. Please remember that some hospitals might provide a much better service.. please also know that in states of high anxiety my own personal emotional response is to get ever more assertive the higher the anxiety levels rise. Not everyone reacts this way. For me, it is my coping mechanism but for others it might feel totally the wrong way to go about things! We all react differently.

finally, my thoughts will be very much with you both and I really hope ‘the dollops of bad news’ as I called them, stop coming and there is light at the end of the tunnel for you both 

I’m currently on day 3 of radiotherapy at Addenbrooks. If I can offer any insights please just ask.  

Hello worried wife, I’m not sure where to start!! Like many here I had zero symptoms and only found out by chance. I asked my GP for a PSA test just because I thought it was a good idea to know how we all are, to be met with rejection and a “what do you want that for” response. Fast forward 12 months to July and I find during test for something else (again I asked for the PSA to be included in a blood test - GP said ok), I had raised PSA only 8.8. Got a call to ask permission to go to a scan, a week later I’m in! Then got a call saying I need a biopsy, (lots of inane questions they asked so as to avoid the C word, but I persisted why and they said it a large tumour). Biopsy 10 days later where the consultant put me on hormones immediately and on questioning (they like facts and results), he said I’ve had it for some time, it’s grown outside and it’s moved onto other areas, booked me for bone scan. 10 days I’m in and done. A week later I’m sat in front of what looks like my auntie discussing treatment and side effects. Including she skirted over the sex bits which has always been an important part of our relationship - and still is. It was last bout me but as you say, there are 2 people in this, I feel for my wife a lot as it’s really affected us both. 
so in the space of a month I went from active fit healthy person to a head case. 
Support? I’m uncomfortable talking to Aunties older than me about sex. So I avoid all support areas. I joined here but after a month stopped looking, some great stories but also some made me feel worse. I just quickly scan the email alerts now rarely coming on. McMillan nurses at the hospital don’t seem to be on the ball when I’ve been so I just walk by now. So it’s me and my amazing wife. 
There are changes coming that can be overcome, the sterile classroom chats don’t really prepare you, but suffice to say it’s not all doom and gloom. The invasive stuff your husband will go through are horrible. It’s not nice but necessary. But once that’s done the treatment side gets easier. But the side effects take there place. 
Having said that, I’m in day 3 radiotherapy and still enjoying an active life in all areas. We adjust as time passes, as each challenge occurs. I’m prepared for the worst but whilst it’s been close…. The worst hasn’t happened!! Yet. 
My head is all over the place, 90% of the time I’m fine. The other 10 I’m in the depth of despair. I break down in odd places, when people are nice to me!! I had to tell my dentist my meds and she was so nice, I started again….. then the hygienist. Then reception booking the next appointment got me, I can’t deal with things like I used to. I put it down to hormones. Without a strong wife I’d be stuffed. But like I said, I’m very aware it’s affecting her to and we are in this together, no one has really understood that, certainly not McMillan. 
I started as a stage 3B, now they think im stage 4, it’s somewhere else but no idea where. 
But look, im having a great life despite all that. I’ve got a lovely wife, 2 young teens. Im lucky. Really lucky. 
iIf you want specifics about treatment  or “ other things” feel free to ask.