niggling and doubts thoughts

Hello Dafna

i am no expert in the management of advanced prostate cancer. I am an expert in niggling and doubt thoughts!!!! I think, if you are in England, you should look at the Nice guidelines for the management of prostate cancer and consider using  them to challenge your medical team:

https://www.nice.org.uk/guidance/ng131/chapter/Recommendations#metastatic-prostate-cancer

I note that the guidelines, upon which NHS care is based, were last updated in 2021. Given continuing new developments, they might be somewhat out of date? 

it is difficult when decisions about treatment are not underpinned by reliable evidence and I would suggest this should also be challenged by somebody , somewhere within the prostate cancer research community?

hth

Hi Dafna

Welcome and sorry to hear your husband's diagnosis.  I wanted to let you know that your husband's treatment pathway is not unique, I also got out on Enzalutamide up-front instead of chemo.  For me the reasoning was fairly understandable - I was diagnosed during Covid and at that time they were not keen to give chemo due to its impact on the immune system.  

There was a trial (Stampede I think) that looked at the Enzo pathway and found it had similar outcomes to chemo, but at the time NICE wouldn't approve it due to the cost of the treatment.  I think the price has come down over the years so that may be why they can offer it to your husband now.  The Oncologist choice will also have been based on how well they believe your husband could cope with chemo - its all a balance of QOL.

Wishing you and your husband well on this journey, Steve

Hello jacobanddafna 

You are right to ask the question - my answer (not being medically qualified) would be to have 100% trust in your team.

The treatment path Jacob is on is working and his quality of life has not been reduced - he's fit healthy and happy - he's strong and has a positive attitude.

I think the Oncologist has left the Chemotherapy "in the tool box" and it's there if Jacob's PSA rises again or it's clear that his health is taking a hit.

"Keep the faith" with your team and if you notice any significant changes in Jacob - just let them know.

You two are doing great as you are.

Best wishes - Brian.

Thank you WW and thanks for the link. Sometimes its really doing my head but I have no energy left to challenge at the moment.

Lots of love

Dafna 

Thank you Brian. You have a magic wand to put me at ease!

Lots of love

Dafna

Thank you Steve. Its make sense wit the Enzu pathway and cost!

Lots of love

Dafna

I agree absolutely with the emphasis on weighing up quality of life versus treatment side effects and overall fitness etc

However, I do  think we have reached the stage that 100% trust is not possible and, actually not a good idea for three reasons.

medical professionals are human beings and do at times make very human mistakes despite all their very best intentions.

Also a  well constructed and well researched and  polite challenge achieves a lot in all disciplines. For example challenging is an integral part of academia and leads to progress in extending knowledge.

I would further suggest that If we question our experts respectfully it gives them ‘a pause for thought’ and gives the patients and loved ones a sense of being equal partners and ownership in the treatment pathway. 

we have ‘asked questions ( challenged?) all along this journey. All the professionals have, in turn, given respectful and informed responses - even to the extent of admitting they might not know the answers! We have really appreciated this

interesting times we all live in:)

Hi Dafna,  Think Jacob is doing really well and as his PSA is now quite low, so I personally wouldn’t be looking for additional treatment until the current regime starts to show signs of not working.  New drugs/techniques are coming on stream all the time so try not to push too hard.  Jacob sounds to have a laid back approach (like myself) but I know we all go through this journey in our own ways.  Enjoy today (although it is miserable on the South coast) and let tomorrow take care of itself.  Stay positive, you are doing great.

Take care, David

Hello Worriedwife 

Yes, I fully agree about quality of life v treatment options and I can see your points about challenging treatment plans however as an analogy:

"You are flying to Spain on holiday - do you ask to see the pilots licence".

I think in this day and age with medical negligence claims everywhere the MDT teams are very good at making the correct treatment choices having reviewed a patients records. I think it's good to ask questions but at the end of the day there are very few cases where the wrong treatment path is taken.

I have asked questions of my team - it's good to do so - and I have appreciated their candour with their answers.

As you say - interesting times - but trust in the team is something we all need.

Best wishes - Brian.

Hello Dafna

I am also an expert in 'having no energy left' :) It is an exhausting journey for us wives as well as our menfolk. I remember accompanying my husband to an appointment just as radiotherapy was finishing (non prostate cancer related) We sat through the consultation, asking our usual questions. As we stood up to leave the very charming registrar thanked me for being so caring about my husband. I burst into tears!!! (not unusual for me at that stage in the game!) He was very concerned and asked me what he had said wrong! I told him that after 6 months of being on the PC journey, he was the first medic who had acknowledged me and how much I cared about and for my husband's wellbeing. He was quite non-plussed but all I wanted to do was give him a big hug!!! (I didn't give in to this impulse during covid/flu times!)

An important lesson I have learned is that you have to be in a good place yourself to be able to help and support other people. Don't neglect your own needs and take care of yourself :)