New update with Stage 4 metastatic cancer (Dad)

Hello DistraughtDaughter Please have a read of my profile as it may have some information that’s helpful. When my OH was diagnosed two years ago I thought it was the end, the first year after was fraught and full on with treatment. Now it’s two years later,  things have settled and he ticks over with the excellent medication he has. Like your dad he is incurable, but at this point he is very stable. It’s possible to live a long time  with these excellent drugs and hopefully things will settle down into a routine for your dad once he gets his treatment plan . 
Best wishes to you both ,

Lx

Hi DistrughtDaughter.

Good evening, it's great to hear that you have been able to have a good chat with your father today and I am very happy to hear that you are feeling less tearful and calmer which will be a great help going forward.

My cancer is also now in my bones and pelvis and I have recently had some RT to the right side of my pelvis to help with my bone pain.

Luckily this has worked very well to date and I will find out next Tuesday 12th off the results of my recent scans. Hopefully your father can have access to RT for his pelvis and I do hope that things work as well as mine????

I use the word "Treatable" nowadays instead of "Incurable" 

I do wish you both the best!!!!

Prostate Worrier.

Good evening,

Thank you for your lovely reply - things are up and down emotionally but I do feel more practical now that I’ve researched all weekend.

I am so glad the RT has helped you and is successful in your treatment. All my strongest thoughts for your next scans. Sounds like you are smashing this treatment

My dad has the cancer in his pelvis and hasn’t been offered RT… I’m confused as to why? I have asked him to ask this at his next consultation. RT has proven itself to zap and destroy tumours so wondering why he’s just getting hormone therapy??

treatable is a much better way to word it and frame it - thank you!!!
speak to you soon and good night, warmest x 

Good morning DistraughtDaughter .

This is a common question about when, if and to what extent radiotherapy is offered to men who have advanced prostate cancer and different oncologists adopt different approaches but all of them will start off with the hormone therapy to see how the cancer reacts to it as evidenced by the rate of the decrease in PSA and the reduction in size of the lesions on scans. Once they have this information they can then decide on the next phase of treatment which might be something like chemotherapy or radiotherapy plus possibly a tablet form of hormone therapy in addition to the injection. Some men do well on just hormone therapy. If men have a a high disease burden at initial diagnosis then they could be started quickly on something called Triplet Therapy which is a combination of injections, chemotherapy and a second generation antiandrogens but timing is important for achieving the best results as the chemo should be started within 12 weeks of having the first injection and the second generation antiandrogens should ideally be started at the same time as the chemo. Radiotherapy, if decided upon, is normally started 3 -6 months after the start of hormone therapy but the extent and type of it can vary from being just to the prostate, to the whole of the pelvic area plus bone lesion to just to the bone lesion. Learning the options will allow your mum and dad to have a more informed discussion about treatment being offered and why.

Hi DistraughtDaughter , I am glad you are feeling calmer and have had a good chat with your parents and that they are able to share the information.  As a parent it is difficult sometimes to decide just what to tell your kids as whatever age they are you just want to protect them.  I have found being open with my kids and my grandkids works well. Unfortunately until you get the next consultation this is a waiting game.  I was in your dad’s position 7 years ago and it’s hard all round.  Stay positive and keep supporting both your parents (I think this journey has been harder for my wife than me).  David

Hi DistraughtDaughter 

thank you for the update on your dad and it’s good to read you are feeling less tearful. Your story is very similar to my dads in terms of spread to a small area of the pelvic bone (3 sites which showed up on the PSMA scan). I mentioned previously that the first opinion we had didn’t mention radiotherapy as a line of treatment but the second opinion from a consultant at the Royal Marsden said that radiotherapy can definitely be used to target the primary tumour in the prostate and potentially the bone mets too. We need to now wait until the consultation meeting on the 19th Nov but hopefully we can blast all visible sites with RT! 

Hi sunnysideup. My dad has just had the exact same diagnosis as your dad and has contacted royal marsden - have they confirmed that they can do radio on the pelvic bone mets and how long after the start of hormone therapy did they say that would begin? Appreciate any info you can provide, thank you 

Hi Calleo143 

So sorry to hear your dad is also dealing with a PC diagnosis. 
It’s been a bit of a slow journey since I last posted but we have moved on slightly this week! 

Since my last message, my dad was referred back to Guys hospital under the NHS (who have been absolutely amazing). He has been on hormone therapy since his original diagnosis and also had a second PSMA scan which showed that out of the original 3 sites on his pelvic bone, only one was now just about visible. He was started on Enzalutiamide around 2 months ago and they repeated a bone scan just before Christmas which showed absolutely nothing on his bones. His PSA has also dramatically reduced to 0.04 and other than feeling tired and a bit forgetful, has thankfully had limited side effects. 

Yesterday my dad met with the clinical oncology team at Guys to discuss radiotherapy. They said that they are going to start RT once a week for 6 weeks on the original prostate tumour but won’t (/ can’t) do the original sites on his bones as they now aren’t viable on any scan so they don’t want to over treat and damage the bone unnecessarily. For the time being, my dad will stay on the hormone therapies and they’ll keep measuring his PSA on a monthly basis. I think the hospital weren’t completely 100% that those original sites seen in his bones were metastatic spread or it could be that they were so minuscule, the HT has shrunk them right down and its now a case of hitting the prostate tumour and then keeping and eye on the PSA and blasting the bone sites if they ever become visible. 

sorry for the long message and wishing you and your dad all the best. Life certainly feels a lot less bleak for us than it did 6 months ago when we got the diagnosis, so hang on in there and if you have any questions then feel free to drop me a message! 

Thank you so much for your speedy and detailed response! Good to know that the NHS has been great. They were slow getting biopsy results and scans organised for us, hence looking at other options but things might pick up now we have the full diagnosis.

That’s so great that the bone mets aren’t visible after hormone therapy. My dad’s are 2cm, 1cm and 5mm so probably not minuscule but good to know we can use the radiation option anyway if they stick around.

Wishing you and your dad all the best too! It has been a pretty bleak month as he got the PR 5 MRI results just before Christmas but feeling much more positive this week. Will definitely let you know if I have any more questions, much appreciated 

No problem at all - I know how stressful and upsetting this all is and trying to gather as much info as possible on different treatment options. Definitely push for treatment under the Oligometastatic PC diagnosis if it’s only 3 sites that have been picked up, as I believe there are more options available when it’s oligo vs widespread mets. 

Just realised I didn’t reply to one of your original questions re timings of treatment - they said my dad would be on HT for 3 months before having any radiotherapy which is what has been done. We also found the time it took for that initial diagnosis under the NHS painfully slow, with lost scan results and some difficult initial meetings with urology consultants who gave us a very bleak diagnosis vs where we are now, hence us paying for the private referral to the Marsden for a second opinion. Since being back within the NHS, we pushed not to be under our previous hospital due to all the things mentioned above and they agreed to transfer us to the care at Guys which as I said previously, has been amazing. The level of care and knowledge of the drs at each meeting has been very reassuring - rather than just feeling like another number in the machine (if that makes sense). 

take care and good luck with it all x