Please can someone offer me some realistic optimism

Hello Skippy1959 

The worst part of the Prostate cancer journey is waiting for results and a treatment plan and I know the question you want to ask- "How bad is it?" That is the question and you will find the answers on 20 December 2023. Below is a link to Prostate Cancer UK's publications and in particular - understanding Advanced Prostate Cancer:

https://shop.prostatecanceruk.org/our-publications/all-publications/advanced-prostate-cancer

I think you need to ask: How bad is the spread?  What course of treatment do you recommend?  When can I start this?

You are already on Hormone Therapy and this will bring your PSA down from the high 200's - this will reduce your testosterone and stop any further production of the cancer cells - so your team have already sprung into action.

We have Community members on here who have a diagnosis of Advanced Prostate Cancer with a high PSA and bone spread who have embarked on "Triplet Therapy" - a fairly new course of HT/Chrmo which is doing well at controlling their condition.

We are all individuals but with you on this journey - I am sure you will have some further replies (better than mine) from Community members who have "walked the walk".

Best wishes - Brian.

Skippy1959,

Brian has summarised the process.  In answer to your question about hope, my response is I don’t know.  In my own case this was the low point of my journey and once I had all the facts could start to plan ahead.  I really didn’t think I would make the year out at the start.  That was over 6 years ago and I am still going (with no immediate plans to change that!).  Treatments may not cure us but they are getting better at letting us have a good quality of life for longer.  As Brian mentioned there are some quite new double and triple therapies around which are getting rave reviews and initially could help us all.  Problem with some of this stuff is it hasn’t been around long enough to be evaluated fully, but advances are being made all the time.

All the best for the 20th.  David

Hello Skippy.

Brian has summarised things pretty well. The gold standard of treatment seems to be the triplet therapy which is the ADT implants that you have already started alongside a second generation antiandrogen of which there are 4 to choose from now, plus a course of chemotherapy which is usually 6 cycles of Docetaxel over a period of 18 weeks. One question to ask is if they are suggesting it then which antiandrogen are they recommending and why. Also how long do they expect you to be on it. You will probably be told that you will be on the hormone implants for life but how are they going to monitor that it is still working. The PSA will be the standard way of monitoring your cancer but do they intend to offer you CT or MRI scans during and after chemotherapy to check whether the mass is shrinking. Will you have regular scans after initial treatment to monitor the cancer. If not then why not. You could ask if you might benefit from radiotherapy as well. Have they done any genetic testing on the biopsy samples - this is thinking ahead of treatment further down the line if necessary, in particular the BRCA genes. As hormone therapy thins the bones then will they be doing bone density scans.

Unfortunately no one can tell you how long these treatments will hold the cancer at bay for as everyone is different. All I can say is that my husband was initially told he may have 6 months and that was in July 2020 and he is still going strong with a good quality of life. Being positive is extremely important as it releases your bodies own endorphins which boost the healing process. Yes we have had to deal with the cancer becoming resistant to the drugs and have had to switch to alternate ones but we have been assured that there are still more tools in their toolbox as and when needed if we want them.

All the best for the 20th and come back with any questions.

Hi Skippy1959

We are like you new to all this. We have seen yesterday the oncologist and we now know that it spread to different bones and ct shows cyst  on kidney which the oncologist dismissed.

The treatment we offered is HT which husband already got the first Zoladex injection two weeks ago and this for life every 12 weeks.

But here is the hope: in January he will start on 2nd generation Hormones Enzalutamide. This drug was not available on the NHS and only become part of the treatment in the last 14 months. This, if works, and it works on 90% of men will shrink the cancer everywhere in your body. This should work for good few years. This is the best treatment around at the moment anywhere in the world. If you go private or if you go abroad. And then, they have other tools like chemo and RT. And also who knows what will they come up with in few years.

The oncologist dismissed chemo at the moment and said lets see in few months how my husband will react to the treatment.

This is for all of you oldies goldies which know so much:

The oncologist mentioned almost by whisper a treatment called Rak? or something similar. This is later on after the standard treatment and you are qualified if you have the gene in your family. Anyone heard anything about it?

Skippy1959, it is the beginning of the road. As all our friends say here: you will go into a new routine and carry on with your life. Keep active and be strong. 

Lots of love from Brighton

Dafna

Hello Skippy. My husband was diagnosed in April with spread to the bones spine and pelvis. He is on what Brian said triple therapy. He was immediately starting a hormone injection called decapeptyl which he will have at the GP every 12 weeks. He also takes daralutamide tablets daily. Now the third bit is chemo and he has just finished his 6 sessions and sailed through. Try not to panic if they say chemo as it doesn't have to be awful for everyone. Click on my rabbit to read how hubbie coped. Try to take someone with you as 4 ears are better than 2. Ask again if you don't understand or haven't heard. Maybe write things down or ask if you can record the conversation. Ask what is the thinking behind what they are offer,why that treatment over something else. Finally good luck and keep in touch 

Good morning Dafna.

Well you have a plan now which is great.

My husband initially had EBRT alongside Bicalutamide and Leuprorelin, then had Enzalutamide which shrunk his tumour to being fibrosus very quickly. It was only when the lymph nodes started to show some increased activity that he was given chemotherapy which is working well at the moment. His tumour is an odd, rare one so wasn't treated conventionally but the final outcome was the same.

Shar's husband has been put down a different route with a different antiandrogen Darolutamide, alongside chemotherapy which all the latest literature is showing to be extremely effective, particularly in relation to time to needing the next stage of treatment.

It just shows that the oncologist treats each person individually and tailors the treatment to them.

I think the treatment your oncologist is talking about further down the line is gene therapy but you have to have certain genes, in particular the BRCA genes, to be eligible for it. These genes are sometimes tested for using the biopsy material. Generally this is kept for when other treatments start to fail. There is also immunotherapy as well as PSMA radiotherapy plus others that I can't remember now.

Morning Alwayshope,

Thank you so much and yes you are right we are all different. Cancer is not nice but all our men ( private and on this Community) got theirs in times where new inventions and new treatments are coming in fast.

https://www.royalmarsden.nhs.uk/news-and-events/news/scientists-reverse-drug-resistance-prostate-cancer-targeting-hijacked-white

I am sure you all know about the above. I just discovered it now.

Thank you again and lots of love from Brighton

Dafna

Thank you so much for all your responses which are realistic and hopeful. I know this is going to sound weird but I am really pleased to meet you all and be part of this community. I generally have felt very isolated but you have made me feel welcome and that I have people to travel on this journey with that understand. Thank you so much and love to you all.

As just one of the many lovely people on here I would like to thank you so much for your kind words. Like a lot of people we try and give back to others the help that we received in the first place but a positive stroke is always welcome.

Skippy1959,

I am sure your feedback will be well received by the group, thank you.  In time, you will become knowledgeable about your own journey and can pass it on to someone else who is maybe frightened and confused, as they take their first steps into the unknown.

There always seems to be someone out there listening and able to contribute, so you are not alone.  I wish I had had this group 6 years ago.  Take care.  David