What is next?

Hello Dafna  (jacobanddafna) 

Thank you for your post - it's even summer in the grim Nort West of England today - most unusual but it does make you feel better.

Yours is a good question. Bearing in mind I am not medically trained and am only speaking from experience on the Community - I think Jacob is doing great and with a PSA of 0.22 ( know it's bouncing around at the moment - it's less than mine!!). He's completed his Radiotherapy 2 months ago so his prostate will still be recovering and his immune system will not be 100%.

i think he would be fine sticking with HT only with regular PSA tests every 3 months. for peace of mind, yes a PSMA- PET scan would be great if you can get one - but perhaps in another 3/4 months once he's fully recovered from the RT and you have another PSA result. I know he's a Gleason 8 but with 3 monthly PSA's you are keeping an eye on everything and 0.22 is great.

Attached is a link - this might give you some more ideas for questions that I have missed

www.macmillan.org.uk/.../questions-to-ask-your-healthcare-team

I do hope this helps.

Love to you and Jacob - Brian x

Hi Dafna.

Jacob is doing brilliantly with a PSA of 0.02. The radiotherapy can make it bounce around a little as the cancer cells die so at the moment you have to wait for things to settle down. A PSMA PET CT scan needs a minimum PSA of 0.2, but preferably above 0.4 for accuracy so there is no point asking for one at the moment. It would be a good idea to check if your area hospital has the capability to do this scan for future reference and if not, where would you have to go. His current treatment is working and long may it continue but it is always worth asking what the options are for plan B so that you can be prepared. Jacob is a PSA secreter so make sure he has the 3 monthly tests. If it starts to rise then ask for another one. If there are 3 consecutive rises that is the time to ask for a PSMA PET CT scan. The guidelines are also a rise in PSA of 2 above the nadir but I would push for the scan before this in order to hit any recurrence quickly. The radiotherapy will be killing the cancer cells in the prostate. The HT will be weakening them so a question to ask is whether or how they intend to try and deal with the mets.

I hope you are enjoying the sunshine in Brighton. Very hot and sunny here with no sign of a break yet.

Hi AH,

You nail it with with'' whether or how they intend to try and deal with the mets''.

I have checked at the beginning of the journey and Brighton send their patients to Guilford for PSMA pet ct. And yes, you put it so simple and correct: ask for a plan B when the HT will stop working. Thank you for your reply, it is a great help!

I love the English summer. I cannot take very hot any more. 

I hope you enjoy the pool and ice cream and let us know what the GG says.

Lot of love

Dafna

Hi Brian,

Thank you so much for your reply. Your are always helping me more than you know. Lot of hugs from me and Jacob. He is asking if you are enjoying the football. He could not watch it on Thursday, he said it was too upsetting to watch. 

Lots of love

Dafna

Hi Dafna

I have watched most games (including England's) although it's harder now with 2 kicking off at the same time. I am looking forward to Tuesday night's game - it will be different and we need to win to avoid Germany in the next round.

As for the heat - bring it on!! I love it warm - it's winter I don't like now - I love looking out at the snow (we live 600 plus feet up in the Pennine Foot hills) but I can't stand the cold!!

I wish you well with your meeting next week - get that question list started.

Kind Regards - Brian.

Hi Daphna, we all think you are wise and wonderful too,  It's natural to want treatments quicker but often a break in treatment is the best option. Jacobs treatment is going well as his PSA shows, time to let the RT and HT do its  work  and go and enjoy summer Jacobs PSA could stay around 0.02 for quite some time so plenty of time to relax before plan B is needed Daphna my PSA has been rising for 9 months so my plan  B will start in August with a PSMA PET CT and hopefully chemo as my latest 2 heart Ops have gone really well,  my  EF is 39% and RHR is 61. My OncoCardio partners are  very optimistic, but if not it will be a full androgen blockade, best wishes to you and Jacob  

love Eddie xx 

Hi Eddie,

Thank you for the lovely message. Yes we are going to enjoy summer and a holiday is booked for September. This was totally unthinkable back in November when we have the diagnosis. 

I give you a big hug for your plan B starting in August and it is so great that your team is very optimistic.

Lots of love 

From us in Brighton 

Dafna, Good to hear how well Jacob is doing, long may it continue!

Personally, I wouldn’t be pushing for treatment just yet, but get an idea of likely next steps and an idea of timescales, although the medics are really reluctant to give dates as we keep proving them wrong by doing so well!!  As you know treatments are progressing fast and who knows what might come in the next few years.  We could do with something moving treatable to curable.

  I remember your first post on here - you have come a long way and your story should help others just starting out.  Just enjoy the summer.  Stay fit and keep positive.  Best wishes,  David

Hey Dafna , hope are both doing ok. I think as women we are always looking for another plan to be in place . Glad his PSA is minimal . Take care and keep in touch 

regardsLuz x

Hi David,

You have a magical way about you to calm the situation and to thread so much optimism into your post. Thank you!

Lots of love

Dafna