Very worried about treatment interruption

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Having been sailing along happily on Prostap for the past 8 years, at my hubby’s last review his consultant said that the PSA had jumped suddenly from 0.9 to 4.5.  Compared with some counts, it’s relatively very low but in his case the cancer is aggressive and the consultant felt it’s time to change the Prostap to something else. Unfortunately, before that could be done, his last review was cancelled with no sign of another date.  We’re just praying that the cancer doesn’t spread further in the meantime.  Two years ago it had spread through the prostate and into a lymph node so he was started on Abiraterone and Prednisolone which soon reduced his PSA.  His bone scan was clear back in March but he wasn’t given a PET scan. 

In addition, nobody has thought to issue him with further supplies of his other medication, and urgent answerphone requests to the hospital have had no response.  It’s actually due to run out in 5 days while we’re on holiday.  Apart from allowing the testosterone to increase further, we’re not sure whether suddenly stopping it would have other adverse effects on his body.  He really doesn’t want to end up in a foreign hospital.  If only there was somebody at the hospital with whom he could discuss problems and queries!  He’s remaining nonchalant for my sake but I know he’s very anxious about the situation.

  • Thank you very much.  It's not our first experience of having to chase meds either. 

    Wishing you all the best for your own PC journey. Quite a roller-coaster ride.

  • Thank you. Flying off to Portugal early tomorrow. Should be much warmer than UK!

    Best wishes.

  • Have a lovely holiday in the sun and put all the cancer stuff behind you for a while. It is warming up here in the Med. so make sure you have plenty of factor 50 with you because the HT makes the skin more sensitive to burning. We had many a happy holiday in Albufeira and Lagos but in the end chose Greece to retire to.

  • Have a fantastic holiday,chill time and regroup relax and enjoySunglassesOk hand

    1. Have a fantastic holiday. Just shows his we have to stay ahead of the game and make sure everything is going how it should 
  • Sorry for delay in replying.  I couldn't remember my Macmillan password.  Have had a lovely week thanks, being totally pampered.  Very hot mostly but poured with rain yesterday and we got soaked on way back to boat!  Oh you're in Greece.  Have visited several islands but our favourite is Rhodes.  I don't know about Greek health provision but it doesn't seem as though you have any problems getting your cancer treatment out there.  I hope not anyway.  All the best.  

  • I am so glad you had a lovely holiday. It really sets you up well for the ongoing battle.

    I have visited many Greek islands and agree that Rhodes, especially the old town, is one of my favourites. I loved Santorini before it became so popular and commercialised - but oh dear, that was over 40 years ago, doesn't time fly. We live on the Peloponnese which is still more traditional and less well known than the islands, plus there is a concerted effort to keep the character of the villages and not spoil them with large hotels and high rise buildings.

    The health system here has been excellent provided you do a mix of private and NHS. Our NHS suffers from the same problems as in the UK in that it is under funded and understaffed. Because so many people go private it means that we have a wide choice of consultants and services so that pricing is competitive. Everyone has to have a GP (you just walk in and wait your turn without an appointment) but their role is to guide you to a consultant, when needed, who then takes over the assessment and treatment with access to private hospitals within days. If urgent we can normally get appointments for the next day with the consultant. The NHS contributes their portion towards private hospital treatment and we pay for the balance so things like a PSMA PET CT scan costs us 60 Euros - I believe in the UK it is anything from 2500GBP upwards. A consultant is about 40 Euros. Our medical oncologist was actually trained at the Royal Marsden Sutton so we know we are in good hands and he is based at a hospital which is classified as one of the best in Europe, however, for radiotherapy we chose a different hospital because it has the most up to date machines and experts in their field. All information is shared between the consultants and they just pick up the phone to talk with each other whilst you are in the office with them so no waiting around. It does mean that we are responsible for maintaining our own records and booking appointments for consultants, injections, scans etc. but for bloods we just walk into the lab and have the results emailed to us and the consultant the same day. Any drug which is considered life saving such as Enzalutamide is paid for by the NHS but for all others we have to pay between 10 and 25% so things like beta blockers cost about 3 Euros, antibiotics 1 Euro, PSA test 1.30. If someone can't afford to go private then the NHS will pick up the slack but it is at a more limited choice and there is usually a waiting time. Language is no problem (it's all Greek to me) as most of the consultants are trained in their specialty either in America, UK or Europe plus the Greek schooling teaches English from a young age albeit with an American accent. The main disadvantage is that for things like radiotherapy we had to stay in an apartment away from home as the hospital is a 4 hour drive away, but again the NHS would pay for this and the travelling costs if you can be bothered to do the paperwork to get the approvals. To put things into perspective, our regional NHS hospital has been without a medical oncologist since before Christmas due to sickness and they have a job getting the post covered from other NHS hospitals which is forcing people to go private. I must admit my heart goes out to people in the UK who have to wait for appointments and treatment to start as this puts such a strain on them and their families.

  • Wow! AH! I’m moving to Crete! Sounds wonderful!

  • The islands don't have access to the specialist treatments so it may mean a 'holiday' in Athens each time. Which end of Crete do you prefer or do you like it all because of the different areas?

  • Hi AH, I have to confess to only having been to Crete once - on a cruise. It’s the health care system that sounds so wonderful! Oh, and the weather would be an attraction - especially as June is proving anything but ‘flaming’. Just listening to the weather forecast - frost forecast ‘in the hills’ tonight. Didn’t catch which hills!