Asking for more treatment

User

Posted 07 Jan 2021 at 21:46

Hello

i wanted to reach out to see if anyone can offer us some advice? (we have had next to no help from Macmillan nurses locally).

my dad has advanced prostate cancer with spread to lymph nodes. Diagnosed 2018 and hormone injections working for roughly 18 months.

April 2020 stopped working and eventually started on abiraterone end of July which never worked, scan November showed more spread in pelvic and stomach area (no bones or organs) so treatment stopped. Dad very ill at this stage, barely mobile, sleeping 20hrs per day, poor appetite etc ..basically we thought this was the start of the end and wondered if he would make Christmas.

Following a call from oncologist end of November who apologised and said nothing else can be done but set up my dad with 4 sessions of radiotherapy in December.

My dad had the radiotherapy, a bit ill for 2 weeks with bowel issues but now, here we are a month later and dad is much much brighter, more mobile, eating lots and eating things he could not last 4 months.

no one has explained to mum and dad or us what this radiotherapy means ie what it does? Does it shrink the cancer? Is it possible my dad could be ok for longer?

sorry for long post but I guess my main question is should I be chasing oncologist for answers, trying more treatment ? Or should we just accept that’s the best that’s possible ?

thanks

anne

User

Posted 08 Jan 2021 at 02:56

RT can benefit men with PCa in Pelvic Lymph nodes and sometimes to help alleviate pain where it has gone to bone. It is quite usual for this to be be given in a few sessions often of high doses, whereas if RT is given as a course of 20 or more fractions where a more complete treatment largely treating the Prostate is administered. RT works by killing cancer and some good cells early on but continues to do so over time as the DNA of cells is damaged and means they cannot replicate and there is cell death called apoptosis. Non cancerous damaged cells are less badly affected by the RT. There is a limit to how much radiation can be given and it is tailored to minimise damage to vital organs as cells are damaged all the way to the target and after it with Photon RT. So this can be a limitation. Also, some kinds of cancer cells are more radio resistant than others. RT can therefore work to varying degrees and lengths of time and there is a limit to how much RT can be given. The patient's consultant should be monitoring him and should be prepared to discuss treatment and options with him. Even they cannot always predict what is most suitable. It rather looks like Dad has been given advanced treatments but sometimes more routine ones can buy more time, which along with pain relief is what is wanted.

Barry

User

Posted 08 Jan 2021 at 08:41

Dear Barry

Many thanks for the detailed reply.

My dad had 4 sessions and they certainly have worked for him. As far as we know the consultant is not offering any more treatment, any scans, future appointments so I guess this means it is end of treatment and will be end of life in the coming months? My dad just has 10mg prednisone daily now.

I think I will and contact the consultant direct to see if we can get a clearer picture. My dad seems to think the rt will stop any further spread and he will continue to get better! Maybe he just prefers not to know the future.

Thanks

Anne

User

Posted 08 Jan 2021 at 12:44

Dear Anne,

Yes nothing wrong with having a word with Dad's Oncologist although if you have not done so already, some want the patient to have given permission for even a close relative to discuss their case.

I think you know your father best and just how much you tell him from what is said in any discussion you may have with his Consultant. Maybe dad is putting a brave face on things for your sake or is just happy he is feeling somewhat better for the time being or even under the impression that the RT has stopped his cancer, spreading further which it may have done for a time.

I am sorry the Macmillan nurses have not been very helpful but I assume they do not have all the detailed information available to Dad's Consultant. After a consultation with Dad's Oncologist, you might find it helpful to contact the Specialist Nurses on this site for further advice.

Barry

User

Posted 08 Jan 2021 at 19:00

Hi Barry

Thanks again for the further reply and advice.

No I would only be speaking to the consultant with my dad and mum’s permission... I guess it’s been more difficult last year as any appointments for my dad were via phone with the consultant, and my dad does use the internet and is quite deaf...so he really missed face to face with his consultant.

My dad is definitely a lot brighter since having the 4 rt sessions and is eating really well, more mobile etc so I guess we should just stop thinking about the future (that may or may not play out like you dread!) and try and enjoy him feeling better. It’s his 85th next week so will be treating him to brandy and cake!

I probably know deep down there is no further treatment that can work but it’s natural to want to heal your loved ones.

This is our 1st journey as a family with cancer and it’s completely different and unpredictable for every single man it seems!

Just wanted to thank everyone on this forum... have been reading and following past 6+months and it’s been a great help as I know everyone on here either has PC or has a close person with it so you know it’s real life.

User

Posted 08 Jan 2021 at 23:51

Palliative RT (usually between 1 and 5 sessions) works by attacking specific problematic tumours so although it won't make any difference to how long a person has left, it can reduce symptoms and make life more comfortable for a while. Most commonly it is done where bone mets are causing significant pain, to stabilise the spine where MSCC is a risk or to reduce the size of a tumour that is pressing on a nerve. It is not clear from your update whether the increasing cancer activity is in dad's organs (the intestines or stomach?) or in lymph nodes in the abdomen, so it might be helpful to clarify with the onco what the RT was actually targeting but clearly whatever it is, it has done its job and improved his quality of life.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Jan 2021 at 12:45

Hi Lyn

Thank you for your reply.

We are really glad the rt has helped my dad as he was so poorly in autumn we thought he might not make Christmas but here he is... much more mobile, no pain, brighter and eating very well and enjoying a few brandies too!

Will try not to worry about the future and enjoy the current time.

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