Hi all,
First post here although have been reading and following the threads on here for a few months. Firstly, a huge thank you to everyone that posts on here - the knowledge and kindness shown within these forums is incredible.
Long story short, my dad was diagnosed with Advanced Prostate cancer a few months ago - initial PSA level was 12.7 a PSMA PET scan revealed three small lesions within the pelvic bone. He was started on hormone therapy (tablets and 2 injections but I don’t know the names) for 3 months and has just had his PSA levels rechecked and they are now showing 0.4. He has also had another PSMA scan which shows the original tumour has reduced as have the bone lesions.
All of the above sounds fairly positive however when going to an appointment to receive the results of the second PSMA scan, the urologist was fairly dismissive of further treatment and used the term ‘there’s nothing more we can do outside of hormone therapy and possibly chemo). We weren’t happy with this response as I have read up a lot about advanced prostate cancer where there are lesions of 5 or less and it is classified as Oligometastatic Prostate Cancer (OMPC).
I know that tthe outcome is very specific to each individual’s response to treatment but I was wondering if anyone had anything similar and had any information on treatment plans or outcomes outside of chemo at this stage, any more info about Oligometastatic PC and or treatment at the Royal Marsden for advanced PC.
We are going for a second referral at the Royal Marsden in Sutton as I know there must be other options and we are not going to let this beat us. My dad is a ‘young’ 73 and we are all behind him to make sure he is with us for a long time yet!
Thank you so much for reading.
Hi Sunnyside up
i was diagnosed prostate cancer in March low psa confirmed in sac,so they started me on HT,then July I had bad cough for 2 weeks went to doctor was given breathing test and that was it stage 4 all Positive NSCLC advanced that was July,I’ve had 2 cycles chemotherapy I was on morphine but off that now just steroids and paracetamol, and feeling very strong,got oncologist tomorrow so we’ll see what’s score,I already know it’s incurable but treatable so I’m very focused
Hi Robert1,
Thanks so much for your reply and great to read that you are feeling so positive and strong following your Chemo. Good luck with the Oncologist meeting tomorrow - wishing you the all the best.
Hello Sunnysideup and glad that your lurking has found the site useful. We are a friendly bunch who try and give back some of the help and support we have received from the forum.
You have obviously done a lot of investigation on behalf of your dad and from personal experience targeted radiotherapy has been an option which appears to be working for my husband's distant mets but he does not have bone involvement. With your dad being so young I think getting a second opinion is a good idea as they can either reassure you that your dad is currently on the best treatment for him or maybe suggest something such as Triplet Therapy which is a combination of the injection he is on, an ARPI and 6 cycles of Docetaxel chemotherapy which is seeing good results. The main question you need to ask is what are the pros and cons of trying for a treatment which will kill the cancer as opposed to just staying on HT at the moment which is doing its job at putting the cancer into hibernation.
I have given you a link to a video which will help you understand what is available in terms of treatment and also an idea of sequencing which will hopefully give you a better understanding and allow you to have an informed conversation when you have the second opinion.
Please ask any questions and we will try and help.
Hi Sunnysideup.
Good afternoon it's great to meet you today.
I was diagnosed June 2023 with a PSA off 1000+ and I was told that it was incurable but treatable.
Since then I have been on Hormone Therapy (injections and tablets) My PSA had dropped initially to single figures but unfortunately the last 3 PSA checks have shown an increase.
The cancer has spread to my bones and I have recently had RT to my pelvis as I was experiencing a lot of bone pain. Initially I was on liquid morphine but since the RT this has stopped.
I do hope that everything goes well with your 2nd referral and yes we all need to keep as positive as possible as this makes a real difference believe me.
Prostate Worrier.
Hi Alwayshope - the lurking has definitely been helpful and I see your username pop up offering advice a lot so again, thank you so much for your reply.
I’ve read a lot about targeted radiotherapy and I think that in a way, that’s what we were hoping the original consultant would suggest, so just got a bit of a shock when they dismissed it. Will definitely take your advice on board about the pros and cons - I think in my head I was hoping they’d say that because it was only a few spots within the pelvis, they could go for a ‘curative’ treatment. I know that the alternatives could mean that the cancer is kept at bay for a long time but it just all feels very scary at the moment and we don’t want to lose him anytime soon so just want to make sure we get the treatment as spot on as possible.
thank you again and for the video - will give it a watch!
There is a rather complicated article which deals specifically with bone mets explaining the different types but if you scroll down to section 3 it summarises the treatment options. One thing I forgot to say is that your dad should ask about biphosphonates to help protect the bones along with calcium and vitamin D supplements. I would also stress that we have people on the forum with bone mets who were diagnosed some years ago and still doing OK so prognosis is a moving feast depending on how the cancer reacts to the treatment and how the patient tolerates it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10028493/
Advanced prostate cancer is not normally curative but is treatable. There is a school of thought that hitting it hard and fast at the beginning might have better results in terms of time to recurrence as this is the time when the cancer cells are most susceptible.
Hi Sunnysideup sorry to meet you under these circumstances but welcome. Getting an opinion from the Marsden will be great and I will be interested to hear what they say. I was diagnosed over 7 years ago with locally advanced and am still here. Advances in treatment mean that your dad will have the benefit of those 7 years research and results so focus on the long term. None of us (even without PCa) know how long we have got, so make the most of each day. Support him by being positive would be my advice. Best wishes, David.
Hi Prostate Worrier,
thanks for your message and sorry to hear your PSA is rising again, hopefully the radiotherapy will keep things at bay for a long time. We have the second referral tomorrow so just trying to make a long list of notes or questions that we need to ask as the first consultation was brief and I think left my my mum and dad feeling very flat and with more questions than answers!
Hello Sunnysideup
Welcome to our little "Club" and as you have been stalking us (nothing wrong with that as we had over 7 million page views last year) you are very welcome.
I can't add much to what has already been said apart from:
* For me quality of life is important the older we get and you need to consider how fit dad is and how he will react to treatment.
* If you are still not happy with his treatment/diagnosis there is the option for a second opinion - link here:
We are all here for you and we all wish you well and look to find the best outcome for dad.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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Thanks Alwayshope - will definitely take your advice and stock up on calcium and vitamin D to make sure his bones stay healthy - will also ask about biphosphonates!
I think the reason the word curative came into my head was because I’ve tried to read a lot of studies on oligometastatic PC and as some doctors refer to this as an intermediate level of advance prostate cancer, they then also reference that there have been cases of OMPC that have been ‘cured’ but I suppose I’m also reading into things and looking for the silver lining vs maybe what is reality. A lot of the studies seem to also be in the US where maybe they have different treatment plans to the UK?
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