New Diagnosis of Advanced Metastatic Prostate Cancer – What Should We Ask the Oncologist?

Hello Spacehopper30 

A warm welcome to the Macmillan online Prostate Community - although I am so sorry to find you here.

From your post you look like you are very well informed regarding Prostate Cancer, it's diagnosis and treatment so I won't give you the standard pre-amble. Your father has already started on Hormone therapy, so as you are aware this takes away his testosterone and stops any further cancer growth.

Once you receive the results of the bone scan and biopsy results (Gleason Score and TNM stage) it will be the MDT meeting which in most cases would be Urology - if all is well they will pass you on to Oncology. (I would have thought with the issues you have mentioned a full MRI scan would have been appropriate).

I fully agree with what you have said and I would have thought triplet therapy would be a great start to his treatment but I would await the biopsy results and the MDT meeting.

Questions to ask your fathers team at this stage I think would for me depend on the results of the biopsy and Gleason Score - however here's a link to our guide to asking questions:

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/questions-to-ask-your-healthcare-team

As for Lutetium-177, that's a tool in the toolbox for use a long way down the line. I am aware of someone on this treatment on the NHS so it is available.

I hope the above helps - feel free to come back to me with any questions you have.

Best wishes - Brian.

Hello Spacehopper30 and a warm welcome from a wife whose husband has advanced metastatic prostate cancer diagnosed in July 2020 and he is still going strong. It is good that you are looking at the options for your dad but it is difficult to predict what treatment pathway he is going to be offered until all the information is in.

The Triplet Therapy is showing good results and may be an option. If your dad is offered this then it is important to get the timing right in that the chemotherapy and second generation antiandrogens should start within 12 weeks of being given the Degarelix. In addition it is best to start them together or with the tablets starting no longer than 1 week after the first chemotherapy cycle but the tablets should not be started before the chemotherapy. This is fairly recent information published this year which is shown to give better outcomes.

With the Lutetium 177 there does seem to be a trial for newly diagnosed men with metastatic prostate cancer where it is given prior to the chemotherapy. You would need to ask the oncologist about this. The NHS has recently withdrawn approval for using it once the cancer has become resistant to other therapies but is allowing those on it to complete their course. This is on a cost benefit analysis based on overall survival statistics but it ignores the quality of life benefit. Lutetium 177 is available privately but it costs about 20K per cycle and it might need 6 cycles. I don't know what insurance companies view is on funding it. Other countries have been using it for a while which is why there is information becoming available as to its uses and something which is being proposed for my husband for the future - but we live in Greece.

Radiotherapy is a useful tool for dealing with the 'mothership' as well as for spot bone lesions as well as the lymph nodes..

If you want a bit more information about the options available then I suggest you watch this video - it is American so names might vary slightly but it offers a more positive outlook compared to Dr Google.

https://youtu.be/-RVVq0uDAEE?si=8pBQthwTThZRLwMd

Please ask any questions and we will try and help.

Good Afternoon Spacehopper

As someone who was diagnosed in July with the same disease I’m doing fine so far, on 3 rd cycle off chemotherapy tablet alongside steroids which I’m wearing off,I’m off all morphine pushing on with my fitness at the healthy options at the gym,I got a great report from my oncologist as the tumour has shrunk and fluid away

Hi !

I had 3 cycles of Lutetium early on in my salvage treatment. Normally Lutetium is later on in a treatment pathway. But I paid for it myself and sorry to say it’s a expensive treatment but if you have the possibility to pay for it then there are very good clinics around Europe with lots of experiences of using this type of radioligand therapy. I had my Lutetium treatment in Finland.

In my profile you can see how it was used as part of my treatment plan.

For me, the treatment with Lutetium the most noticeable side effects was tiredness and fatigue. My blood tests came back ok in time for each cycle and then of course some days afterwards with extra caution; sleeping together, extra hygien when using the toilet. So, for me Lutetium was actually one of the easier treatments

Best wishes - Ulf