Hi there

Hello again D3bz . Glad you have found your way over here. Just a couple more things - has your dad been put onto anything to help protect the bones (either biphosphonates or denosumab) plus check that he is taking calcium and vitamin D as a lot of men are advised to do this when they have long term hormone therapy which can thin the bones. Radiotherapy techniques can be difficult with the colitis as it can aggravate it but there are other things available. Do you know what hormone therapy dad is on? If it is just the injection/implant then there are different ones which can be added in called second generation antiandrogens ARPI such as Enzalutamide, Apalutamide, Darolutamide which work in a different way to control testosterone levels. Abiraterone plus steroids is another but again a different mode of action. There has been work done with drug combinations and chemotherapy but timing seems to be important in order to achieve longer control before recurrence - latest research suggests that the chemotherapy should be started at the same time as the ARPI or at the latest the ARPI should start within a week of the chemo but not before. Also with your dad's cancer spread they might offer a platinum based chemotherapy so check this out. When did dad last have a testosterone blood test - they need to check whether he is still at castrate level. Don't forget to ask about the Lutetium 177 which is a targeted nuclear therapy.

The one thing to remember is that as the mets are of prostate cancer origin then the treatment will be the same.

I hope we have given you some things to think about but please come back with any questions.

Nothing at all to protect the bones 2bh . The hormones is just the injection every 3 months and blood test for the Psa levels .

The things you jabe mentioned i jabe mo idea with dad's prostate being ok ( as can be think foolishly we just carried on and put our head in the sand to speak )

Don't beat yourself up. Do you know what your dad's PSA has been over the last 4 years plus his initial PSA? There are a small number of men whose cancer does not express PSA well or they have a mixed type so the PSA is not the total solution to monitoring but your dad should have had an MRI every year for 2 years to check on things. Also the cancer gets used to the hormone therapy and finds another way to get it's food.

His psa levels as average out at around 2 upto the 4 mark up and down .. I can't remember the 1st count i know it was really high in the 1000s.. as for the Fri and rectal examination  NOTHING at all  

Your dad is definitely not a low secreter with an initial PSA of 1000+ which indicates that it was locally advanced at the least. Do you know what his TNM was when he was first diagnosed? Treatments have come on since 2020 but I thought you might like to listen to this video about what a PSA above 1000 usually means and how it should be treated. It might allow you to have a more pointed conversation with the oncologist about initial treatment and ongoing monitoring in the last 4 years plus what to expect in the future.

https://youtu.be/aJc-gG5X8zE?si=ha6etrXL9396tdT9

Good morning D3bz .

I hope you had a productive meeting with the oncologist yesterday. Things can be a bit overwhelming but if you feel we can help with answering any questions then please fire away.

Emotionally it can be a difficult time for the whole family but Macmillan can offer a range of support options as can your local Maggie's if you have one. 

On the forum here we try and support each other through the ups and downs, provide information on treatments and help to deal with them, plus we have a chill out area (No Specific Topic) where a whole range of conversations crop up from holidays, doughnuts and the latest are memories of gym knickers and the antics of men from the top of the wardrobe (if they can manage to get up there). Please feel free to join in any conversation along with giving us updates on your own thread. If you wish to read anyone's journey then click on the picture or green chair by their name and you will find that some have kept a record of it as an aide memoir, plus it aids us to help you and means that we don't have to keep asking the same questions. If you wish to start dad's journey you can click on the profile page on your account, edit, type, and don't forget to save.

Look forward to hearing from you soon.

Thank you for reaching out i hav just messaged Eddie about it was a nightmare .meeting at half 10 consultant turned up at 2 so the tension between myself brother and mum was high to say the least . Was lead to believe the meeting was to discuss the next steps only had the results for his bowel and liver still waiting on the lungs and lymph nodes which they advised could be another 2 week and then they need to meet up then meet us .   Discussed CPR  explained I can't make that decision  yet even though I know the answer to pylhysically say it i can't right now I feel it's like I'm signing dad off . So still in limbo at the moment so wasn't productive  at all ready xx

I am sorry to hear that you are no further forward at the moment and the waiting can be very stressful for all the family. By the sounds of it they are checking that all the mets are of prostate cancer origin before the MDT meet to discuss the 'what next'. To have the CPR question thrown at you must have been very disconcerting and not something I could make a decision on spur of the moment as I would have wanted all the information, and time, before I could make that call so good for you for standing up to the request.

Can I ask how old dad is. What treatment is offered can be influenced by his age plus underlying health issues besides his colitis.

Hi D3bz that wasn’t a good meeting and it sounds like you are all having a bad time.  Without knowing all the facts, (age, Gleason etc) it is difficult for us to have an opinion but I assume your dads team are waiting for all tests to be in before coming to a conclusion.  The CPR part I don’t understand - is he having heart issues?  Age does come into the equation as far as I understand the older you are the slower the growth of PCa (which is a slow growing cancer anyway) and there is a balance between being fit enough to accept treatment and quality of life.  I hope you get results soon and please post any questions or updates.  Best wishes, David

Hi David   Can I explain the DNACPR . This does not mean NO treatment . The form says that if your heart or breathing stop, CPR should not be tried. This means medical staff will not try to restart your heart or breathing.  E.g. massive heart attack or a catastrophic stroke. 

“DNACPR is about CPR only. It does not mean that you will not get care and treatment. You will continue to have all the other appropriate care, treatment and support you need.” 

I’ve  had to ask these questions when I was working and it’s a very difficult one . I always asked families to discuss it first before making this choice.   I hope this makes some sense and puts it into perspective.  

BUT it’s a personal choice for families . I think some medics are very impersonal and need to ask at a different time when they have a rapport with anyone . 

I also hope d3bz gets some answers soon as this is the worst part waiting .  

best wishes 

Liz xx