New and anxious

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Hello

Apologies if this sounds like a meandering mess.

First post, although I have been following for a few weeks after husband (60 next month) was sent for tests due to no symptoms but microscopic blood traces in urine and eventually a blood test with PSA of 23. After many tests, last one being a PETscan now waiting for an appointment on 22nd May for biopsy and PETscan results with Cancer Specialist Nurses. Already had cystoscopy, MRI, bone scan, US urinary tract.

The waiting is awful. I’m finding it hard not to worry but husband is carrying on with work etc so has distractions. Everything else is on hold.

I suppose I’m wanting things to move quickly. There doesn’t seem to be anyone to support us and we’re just in limbo awaiting the appointment. What will happen at the appointment with the Cancer Nurse Specialists? Will they start treatment or will we have another few weeks waiting to see the specialist? 

I’ve not wanted to post as I know that there are others in far worse situations. I’m just struggling with the waiting and lack of communication.

Many thanks.


UPDATE

Thank you so much for all your responses. So helpful and informative.

Have received a letter today dated 13th May confirming US Urinary Tract identified no pathologies and that they are waiting for TP Biopsy ( took place 4th May). No mention of PETscan which was done privately and consultant was very keen for this to be done as he says very likely high grade disease. Letter was from Clinical Nurse Specialist - Faster Diagnosis Nurse.

Who will we actually see at this appointment? A consultant, Clinical Nurse Specialist or Uro-Oncology Clinical Nurse Specialist?!

Feel like we’ve been left hanging with no real information and no real point of contact.

Sorry for the rant and questions. Just not liking this being in limbo and waiting.

  • Hello Gilli - I could have been writing exactly the same as you two years ago! I was frantic with worry for my husband, having difficulty getting timely appointments and in floods of tears fearing I would lose him! He was T3aN0M0 Gleason 4+3=7. We went through the NHS for all his care. From the MRI scan and biopsy they knew one of the tumours was bulging against the the prostate wall but couldn’t be sure whether or not it had actually broken out. We were told that they always go for the higher grade when in doubt and treat accordingly.

    As soon as all the results were in they had an MDT meeting and offered radiotherapy (RT) and hormone therapy(ht). He was not initially offered surgery as he was 75. We did ask about it and they then offered to refer to a surgeon but my husband said he did not want surgery because of the risks. He was started almost immediately on bicalutamide tablets for 28 days with decapeptyl implants starting two weeks after the tablets. This seems to be the standard approach for HT. I always remember the nurse telling us that as soon as he started the tablets the cancer would be stopped in its tracks - what a relief! Rt took place 3 months later 20 factions over 4 weeks.

    We found that we had to take control of our own diagnostic pathway - being politely assertive and pushing for appointments and results. We said we were prepared to take last minute cancelled appointments and drop everything and go straight to the hospital. This worked well and we got through the system more quickly. I also kept a diary of each and every contact with anybody and everybody connected with the hospital and GP practice - recording names, contact details and what was said because everything was becoming quite a blur. This proved very useful when we made a formal complaint!!!

    We were warned about dire side effects of RT and were extremely scared beforehand. In reality it went very smoothly with tiredness and a bit of bloating being the only issues. I think the tiredness was due to the travelling more than the RT. I did all the driving. 

    so - almost 2 years since the first PSA result to cause alarm! My husband has just been told he doesn’t need any more hormone therapy. He has aged ( but don’t we all?) he has gained a ‘podge’ around his tummy and  boobs and lost body hair. He is troubled on some days more than others ( convenience ie avoiding things he doesn’t want to do?), by fatigue. He gets brain fog at times and no libido. BUT …he is still here and we are enjoying life. We were told it will take 5-6 months for the effects of ht to wear off and to expect a small rise in PSA. If the PSA rises too much he will have to have repeat scans and potentially have ht for life if there is more cancer.

    i hope this helps you to see the that you are not alone in this journey and that your reactions are perfectly normal but that there is life with prostate cancer - even if there may not be cure it can be managed for a long while. We are hoping that my husband has been cured but know this is not guaranteed and might need to be ‘managed’. The oncologist said that now he has been treated his life expectancy is exactly the same as any man who has not had prostate cancer! I’m not sure how reassuring that is as I want him to last longer!!! ;)

    good luck!,

  • Thank you so much for such a helpful and thoughtful response. It certainly helps and I don’t feel quite so worried and on my own. The waiting and lack of communication from Urology is the thing that concerns/worries me and makes me more anxious. 

    I realise there are so many people going through this and waiting is part of the journey but I just want to find out what we’re up against and start dealing with it. It doesn’t help when the CNS says it’s probably slow growing so a few weeks wait isn’t going to hurt but the private consultant says it’s high grade.

    Anyway husband cheerfully said not long to go now!! Wednesday still feels too long away for me so it’s off into the garden to keep myself busy tacking the weeds and other household chores etc.

    Thank you once again for taking the time to reply. I really appreciate the support of the group.

  • Hi Gilli, looking back the diagnostic part is the hardest part of the journey. You are working your way through to the end of that part though! I think it’s a feeling of not knowing and not having any control as much as fear that gets to us wives. I also think that once you have all the facts and figures and the treatment plan agreed, the emotions do settle somewhat. You will get to that point but I think all of us wives go through this whole process beforehand. You are certainly not alone!

    I found the support I received in this forum was so valuable! I akso learned a lot about PC, how to navigate through an overburdened, under-resources NHS in the best way possible. 

    If you are in England, then please be aware of 2 government targets. Every patient suspected of having cancer should be seen within two weeks by a specialist of the GP referral. Every patient diagnosed with cancer should have their first treatment within 62 days of referral. This does not happen always but it does speed things along if you start citing the 62 day RTT time ( referral to treatment)! If things go wrong you can call upon your hospital trust PALS ( sometimes called PILS) service to get communications etc sorted!

    HTH and roll on Wednesday!