Very worried about treatment interruption

Worriedwife said:

frost forecast ‘in the hills’

No doubt in The Pennines - it's "Brass Monkey" cold today and this is June. I am staying in - Mrs Millibob can walk the dog!!

And to think this time last week i was in 36c in Turkey.

Currently 31C here in Greece. We have to ration visits to our local ice cream parlour which makes their own - still can't get them to make a licorice one. Housework is kept to a minimum in the summer as the garden takes over and, of course, we have to have a swim in the pool to cool down.

No I am not jealous - honest - I just don't like the cold anymore!!

We also love the old town in Rhodes.  That Street of the Knights is so atmospheric at night!  We went to Santorini on a day trip from Crete about 30 years ago.  We visited the excavations but they’ve obviously done so much more since then. We saw a black beach for the first time and were fascinated, although have seen several since then in the Canary Islands..  

I was interested in how the medical system works.  I mentioned it today to a friend whose daughter lives in Corfu.  She had the similar problem of needing to fly to Athens for an operation and having to stay over for a short time, and the hassle involved in applying for funds.  I hope your RT was successful and you didn’t suffer many, if any, side effects.  The lack of oncologists in your area must be worrying for people unable to afford private treatment.  Mind you, with our NHS on its knees and so much of its work now being outsourced these days there’s a strong suspicion that it will soon go under and be replaced here by some kind of private insurance plan.  I understand there are now instances where pharmacies have stopped supplying some drugs due to underfunding. 

I hope we don’t end up like the Americans who have to apply to their insurance companies for funding for tests and medication, which can take weeks, and are then often refused.  Somebody mentioned PSMA PET scans costing anything from $15,000 upwards! 

We’re lucky in that our local hospital has a good name where cancer treatment is concerned and it’s only half an hour’s drive away, or there’s a car service if you aren’t well enough to drive or catch a bus.  My husband has also been fortunate in having been diagnosed back in 2007 when the situation wasn’t as bad.  Unfortunately, his cancer returned 8 years after his brachytherapy (a few cells were missed) but they lost no time in starting him on HT and have been keeping a good eye on him ever since.  In fact they even spotted a couple of small lung lesions on a PET scan 2 years ago, unrelated to the PC, and they were removed only 6 weeks later. 

His doctor phoned him yesterday to say that the BT he did to get his meds before our trip has shown another PSA rise and that there is still too much testosterone in his system.  They’re not hanging around as a few hours later he was given appointments for CT and bone scans. They will probably change his Prostap injection to something else but in the meantime we’re crossing our fingers that the cancer hasn’t spread any further.  It’s incurable but one always hopes that it can be controlled for some time yet. 

Hello Chocaholic28 .

I sympathise with the rollercoaster of recurrence. Hubby has had 3 so far in 4 years and you know then that he has to go through another round of treatment. Occasionally he says he has had enough and just to leave him alone. I then sit with him on the terrace, play some music and let him relax looking at the sea. This calms him and eventually he comes round to realise that life is still good and worth fighting for. 

That is an interesting conundrum about what to do next if the Prostap is not suppressing the testosterone. I asked our oncologist that question when hubbys started creeping up (he is also on Prostap) and got a non committal answer but fortunately the next test came down again. Let us know what they change him on to as I presume it will be one which works in a different way.

We do occasionally have problems getting some branded drugs but our doctor can usually switch the prescription - this happened recently for a migraine one and in fact the alternative works better. Also all our microbiology labs went on strike for 3 weeks recently as they hadn't been paid by the government for 3 years. This put intolerable pressure on the NHS hospitals so a deal was done and things are back to normal again.

We are hoping that the SBRT has worked on the mets. Only yesterday hubby said that he is feeling really well and he is definitely eating better and enjoying his food. It is the mental struggles which are more challenging due to his PTSD and the HT. I will be updating my thread -All Systems Go -when we get the results next week after the MRI, although our appointment with the GG has just been postponed for a week. 

It sounds as if you have a good doctor getting scans organised for you and hope that you don't have too long to wait. Keep us informed. It is useful for us on the treatable pathway to know what is available at different stages as we are all learning how to navigate our way through it.

Hi Alwayshope, it must have been so depressing for you both when the cancer kept coming back.  No wonder your hubby feels he’s had enough, especially having to cope with PTSD as well!  I’m glad he’s feeling well at the moment though. 

I know many people have had awful mental side effects from HT.  My hubby has been lucky in that respect. Apart from a few hot flushes and ED (we’re past the age of caring about that) he hasn’t suffered any unpleasant side effects.  He had Prostap by itself for 5 years, after which the PSA rose so Bicalutamide was added.  This was ok for 2 years but after a while the cancer feeds on it so he had to come off that.  A PET scan at that time showed a slight spread through the prostate and into a lymph node so he was then put on Abiraterone which, I believe, is for PC that has spread.  He’s been on that for about 18 months.  Has to take a steroid with it to offset the side effects, but the steroid also has side effects, one of which is blood thinning and bruising.  Abi can affect the kidneys and liver so he had to have monthly BTs for a time to make sure it was ok.  So far, on the whole he’s had no problems obtaining the meds although we did hear that steroids are in short supply for some reason. 

The NHS stopped issuing branded drugs some time ago to save money so we just get generic ones now.  In some cases people have complained that they’re not as strong as the branded ones but we’ve had no problems ourselves. 

I’m not sure what they suggested to replace the Prostap but think it may be Degarelix which is injected monthly rather than 3 monthly.  I’m a bit worried as I’ve read that some men have trouble with major swelling at the injection site – he only has a slight lump after the Prostap one.  Well, we shall see. 

Things have slowed down a bit.  The CT scan he had yesterday turned out only to be of the thorax for his lung cancer review and he’s still waiting for an appt for abdomen and pelvis scan, although his bone scan is next Monday.  The hospital seems to have got a bit confused over his being under two clinics!  His next review isn’t until 18^th July which seems a long time to wait to find out whether there is any further spread.  He doesn’t say much but I know he’s really dreading the necessity for RT or chemo. 

That lab strike must have been very worrying for you all but I’m glad it’s now been sorted and do hope he has a positive result from the SBRT.  Keep us posted.  Best wishes.

Hello Alwayshope

I’ve been thinking about you and wondering about the results from the SBRT.  You mentioned that you were both awaiting a review with the MRI result in your last posting.  I hope it was positive  news.

Very positive thanks Chocoholic. I have updated my thread 'All Systems Go' with the journey on SBRT. Basically the mets we were most concerned with behind the pancreas and in the adrenal glands are showing moderate reduction and all other mets a slight reduction. Oncologist has said the cancer has shown a good response to the treatment so far and has signed us off for 3 months to enjoy the summer. No change to existing meds of 3 monthly Prostap and and every 2 months an Xgeva jab for the bones. More talk about the next possible steps if necessary so definitely not the end of the line.

Hope everything is still ok with you both but know that you will be fretting until you get the results. Keep us posted on how things are going.

Ah, I’ve just found your thread and updates! 

That’s good news that it’s had a good effect so far.  I hope it will continue to do so.  We’ll never be able to wave goodbye to this cancer but hopefully it can be kept at bay for as long as possible.  It’s a shame that no treatment comes without side effects but I hope you’ll both have a pleasant summer nevertheless. 

Everything’s gone slow here.  Just over 2 weeks to his review (yet another phone one).  He’s had his bone scan but due to a mixup, is still waiting for a CT scan appointment, plus the result of his 6 monthly lung scan.  He’s going to ask  about an orchidectomy at his review as he’s still not fully castrate although we can’t see the overstretched NHS agreeing to that.  

Hi Chocaholic28 .

Both NICE and NHS guidelines indicate that an orchidectomy is a possibility as an option to hormone therapy in prostate cancer. I hope the CT scan gets sorted before the consultation. Keep us updated on how you get on.