Hi new to this forum and sorry for my rant

  • 21 replies
  • 164 subscribers
  • 1016 views

My husband has a PSI of 14 and our GP asked for  a fast track cancer  appt  due to his other symptoms. Received a letter following week with a date but in bold writing do not attend this appoint and ignore any text messages .

phoned the hospital as he didn’t get one text but two . Was told by the on call  specialist nurse that he should not attend . Asked how long he would have to wait but informed it’s very busy and it will be at least 6 weeks . Got into a debate about the delays in cancer and was told if it’s slow growing he’s plenty time , I then said what if it’s fast growing   She replied its already too late.  She did say it with be radium as a treatment   Appt 6 weeks after for MRI scan told two weeks for results . Phone call two weeks later  and he was told over the phone that he had cancer  in his prostrate , seminal visal and a sus lymph node and he needed a biopsy . Again same old we are busy . Said we would travel for such, however she did have a cancellation and he had it yesterday and told it’s going to be 5 weeks for the results . He is now waiting on a bone scan but no appt .
Up till now we don’t have a named consultant nor specialist nurse.  We have lots of questions unanswered and don’t know who to ask I just feel these delays are life threatening and nobody seems to give a jot .  Is it me or are other people experiencing the same. 

  • Hello Johnam, I’m afraid I don’t know anything about the Scottish health care system. However, in England there are Government- set targets. Every patient referred by a Gp to secondary care should be seen by the hospital  within 2 weeks from the date of diagnosis. Every patient diagnosed with cancer should have started their first treatment within 62 days of their GP referral. ( This is known as RTT - referral to treatment time). This was the ‘big stick’ we continually mentioned when Urology was so woefully lacking in its care. It might be worth your while finding out if Scotland has the same targets? 

    it is worth mentioning that NHS hospitals in England do struggle to meet these targets due to high demand on their resources , industrial action etc. However, they do have to declare their successes and failures to meet the targets in percentage terms! These can be found ( in our locality) in hospital trust board meeting papers ( usually under quality and performance headings) and/ or the Integrated Care Board meeting papers.

    When I started quoting the RTT targets to clinicians and admin, their expressions were very interesting - from surprise that any patient or partner should know about this target to complete panic that they were woefully falling behind in their duty of care!!!! It got things moving!!!!

  • Yes we are two weeks also . He received a letter with an appt date within the 2 weeks and at the bottom in bold writing do not attend . So then phoned the specialist nurse who sent the letter and she said it’s very busy and 6 weeks for his MRI . That’s when I got in contact with my MSP .i need to look into the other standards . Many thanks 

  • Hi Johnam, I suspect that this ‘do not attend’ letter means that they held a multi disciplinary team meeting without your husbands ( or yours) presence to decide the diagnostic pathway. This saves the cost, travelling and time of an appointment for yourself but denies you the opportunity to ask questions and state your requirements, preferences etc. we had the initial appointments but the treatment pathway was determined at an MDT meeting without our involvement. We challenged this and were offered the opportunity to be referred to a surgeon in addition to the oncologist. By this time, though, my husband had decided he wanted the RT and HT pathway. We’re now approaching the end of HT and he can’t wait for the side effects to wear off ( we are told 5-6 months) I am expecting the return of a 21 year old body ( as if!!!!!) Slight smile

  • So they actually did this without knowing he had cancer as he had only a blood test . What a waste of professional time . Just my opinion . But again thank you for replying 

  • Hi Jonam. 

    I understand and emphasise with how you feel.

    Unfortunately treatment and timescales aren’t consistent across the country. I have T3e, Gleason 9 and CPG9. Everything seemed to be going really well at first (I did get a dedicated Mac nurse) and then, I was coupled with a consultant that wasn’t very communicative at all. All of the MacMillan literature said that I should ask about different treatment options and their pros & cons and ask lots of questions.  When I asked about alternatives, I was simply told; ‘no!’  When I asked why is that?  I just got ‘we just don’t!’  It wasn’t long after my diagnosis so, I wasn’t at my sharpest and didn’t challenge at the time.
    However, when the diagnosis had sunk in, I thought ‘that isn’t right!’  When I had my meeting with my Mac nurse, I said that I didn’t feel happy about the way I was treated and I felt that I was being ’flow-charted’ and not treated or given appropriate levels of information. The Mac nurse got me transferred me to a different consultant and then, things started to change. Now, things are rolling along nicely and without any pushing from me, my RT will commence shortly! 

    I pop into the MacMillan cancer info centre, for a chat every time I’m in the hospital and I feel massively supported now 

  • Many thanks I will do next time we are at the hospital 

  • I am finding that as the effects wear off the body of a 21 year old is returning, unfortunately, I seem to have lived a very very hard life for the last 21 years so not noticing much difference Rolling eyes

  • So I shouldn’t get my hopes raised?!  We are feeling in a sort of limbo right now! If the ht had been continuing, my husband would have had the injection in about 10 days time. So, he is still having ht as such now. But no more HT injections! So, he’s finished but not finished! Also, I know there is no guarantees - so has he got cancer or is he cured?  It’s a funny feeling - it’s 2 years in June since he got his PSA result of 10 - 2 years under the shadow of cancer! Are you noticing any difference without the HT? It will be interesting to hear of the experience of stopping it?

  • It is a strange situation, as the mind hopes that there will be a fairly quick change, but I found it's actually a gradual process.  As I was only on HT for 9 months, my guess is that the effects are starting to wear off sooner than if I had been on it for a longer period of time.  I think it's a case of time will tell.

    The first difference I noticed was that the hot flushes started to become less intense within a few weeks of stopping & have now stopped altogether.  I didn't notice any mood swings whilst on HT so can't really comment on that side of things, & whilst I didn't suffer too much with tiredness my energy levels now seem more or less back to where they were when I started.  I think the biggest change though has been the return of my libido (which was zero whilst having treatment), plus the shrinkage that happens is now a thing of the past so happy days,  Still need to lose the bit of weight I put on which for some reason has gone around the middle & given me a 34 inch waist & as most of my summer trousers are 32inch is something I now need to focus on,  Lots of gardening & long walks to look forward to. 

  • Thank you for a really comprehensive reply. It sounds as if things are going very well. We were told to expect a small jump in PSA - have you experienced that? My husband has been on HT for 18 months. Just knowing he does not have to have any more seems to have given him a psychological boost. He has not been tOo troubled with hot flushes but the weight gain, the brain fog and the tiredness have been hard to watch. I’m hoping to see these diminish over the coming months. I am also worried about recurrence but I guess we will just have to do what’s necessary if/ when that happens!

    thanks again and I hope you continue to do well Blush