Locally advanced and advanced prostate cancer, staging, treatments, best practice and anything good to know

Hi !!

Perhaps you mean Champions League and Europa League Group play Anyway, seems like you plan to enjoy movies and etc and it’s always nice to chill and relax infront of the tv.

Got a automatic reminder from the App my finish clinic is using that it’s time for the PSA test so, probably they will soon send me the referral for me to visit my health center and take my tests.

So, anxious and stressed out for the moment and no fun at all for my wife and my family to say the least.

Best wishes - Ulf

Hi Ulifhub.

Thanks, yes England have got two matches in the UEFA Nations League which is a fairly new format in football terms.

Yes I have got plenty of tools on my TV setup to keep me going how about you??

I have got another CT Scan tomorrow at 5-15 I think I will have a bucket load of them to date.

I do hope that everything goes ok with your PSA please please don't worry my friend.

Prostate Worrier.

Hello Ulfhbg 

I've read your journey which is very interesting, please read my profile which outlines my partners treatment,  it is similar to your - RT and ADT. You may find something useful there. Like you I really appreciate people sharing their journey of treatment with PC, especially if they are from a different country with other choices available.

Best wishes 

Hi Ulfhbg  Why you would stop with Abiraterone for Apalutamide if Abiraterone is still working, Is there a reason or is it the use of steroids.?  At first we were concerned about the steroids, but it transpires it is a very minimal dose as your body makes about 7mg of cortisol a day naturally. My partner takes 5mg-10mg steroids daily all depending on how he feels (fatigue) He will take Abiraterone for his lifetime or until it fails. then I believe his next line of treatment will be Enzalutamide as that may work and worth trying as it works in a different way. As soon as his PSA starts to rise he will have scans and targeted RT to any mets that are visible over the body. that will carry on as long as possible and then when all HT fails I think he will have a blanket approach of Chemo. His consultant is very keen to stretch out the use of (working) medication and RT for as long as possible.  I think it's very interesting the differences in treatment that people have.

What are the properties Apalutamide that you like? I've never considered it as an option. 

Lorraine

Hi Barry W (Lorraine) !

Thanks for your messages and all nice comments and really interesting questions. I have read your husbands bio and that’s also very interesting and a roller coaster to say the least but if I understand it correct your husband has had a very good respons to the treatment so far and hopefully it will continue. Do I understand it correctly that your husband never had a PET Scan before he was on hormone therapy and they never could establish that he had any metastesis but only suspected it because of the PSA?

I understand that you’re talking with your medical team taking a break from hormone therapy correct? But your writing that he will be on lifetime Abiraterone so, will he not be on a break from that as well?

From your question regarding Apalutamide. Apalutamide as I haved looked into it, is a type of ’next gen Bicalutamide’ if I understand it correctly. This means, as I understand it, that Apalutamide don’t stop testicles to produce Testosterone ( as HT and actually Abiraterone) but it inhibits prostate cancer cells to be able to take up testosterone as ’fuel’. In short, perhaps you can come out of chemical castration but still block any prostate cancer cells from using Testosterone.So, more of a QoL and perhaps also a security measurement.

Nothing I’ve discussed with my MO at all anyway and just some articles and dialogues I’ve seen doing my own amateur research. But like many here in this forum I like to be active in my own treatment road 

But do I understand correctly that your husbands MO / medical team never did for example a PET scan to confirm if he is T3BNxMx or perhaps higher but assume it because of the PSA value?

Thanks anyway and if more questions just write a mess  Good luck on I really hope that your husbands good respons keeps on going.

Best wishes - Ulf

Hi Ulfhbg 

It was all a bit of a rush when my husband was diagnosed, the waiting times on the NHS was quite long, because of his staging and PSA we asked our GP to go on HT immediately.  In our frustration we then switched to private care for the treatment plan and was offered a PSMA Pet scan.  The CT scan and MRI had picked up the spread in the seminal vesicles, but no micro mets anywhere else, we were told the PSMA pet scan would be unlikely to pick up a wider spread of micro mets because he had been taking HT for some weeks, but still worth looking. We've actually had three consultants take a look at the information and they all agreed there will be microscopic spread because of the PSA and both seminal vesicles being fully involved. Basically they can't see it, but statistics say it is highly likely there. So his RT focused on where they believed it would be.- nodes, ribs and covering the entire pelvic area. When he had his RT his consultant then decided he would have Abiraterone and Zoladex for life. The plan was RT to target it and kill it and the long term HT is to smother and suppress anything left. So far this seems to be a good plan. We have asked for intermittent HT, have a break in a couple of years, one consultant ( second opinion) says yes, but must be closely monitored, the other says no, there is no benefit to stopping. So we will see. At this point his body has recovered from the RT and the HT has become part of his life, he manages it all very well. Like you I have done quite a lot of research on treatment and drugs as it's very helpful to understand what's happening. I'm constantly looking at options and new ideas.  it's good to be on this forum as there is plenty of information to look at and being "active" in your treatment is a great idea, so you can ask lots of questions.

Like you I feel the diagnosis is quite vague at this stage T3b feels like it's on the cusp of treatable or cure, a very wobbly line. there's so many variables involved that it's hard to know where you are and each person is different. At this point Mr BW is very stable which I'm so happy about.

L

Hi BW / L !

I really can understand the stress and to get your husband on treatment and sometime the timing just ’sucks’ which it sadly did in regards of the PET Scan. But I must say, considering, your husband has really responded well considering and I mean, undetectable PSA levels means the treatment has worked / is working.

I still can’t understand but ok; your husband had a PSA that might indicate spread and also the SV involvment (e.g. the T3B). Your husband went on HT directly after diagnos and if I’m not mistaken HT will help out in ’killing / starving’ micro mets. Any LNs in the near area of the prostate is radiated together with HT and Abi so even if he was T3BN1 they have been treating him with a possible curative intent. That leaves your husband with possible distant mets i suppose. On the other hand, he’s been on undetectable PSA levels for a rather long time and if I was your husband I would like to discuss the possibility of at least intermittent ADT (and also coming off Abi).

I’ve read examples of intermittent where they go off ADT, they do Bicalutamide 6 months, they go off Bicalutamide and of course check PSA on a regular basis. Then the person hopefully recover T-levels but you still have a ’protection’ with the Bicalutamide hopefully blocking any prostate cancer cells (if any) from Testosterone. It’s from those articles and dialouges I also read about Apalutamide.

Well, you have had medical experts so of course we should always respect the experts. But like you say, if your husband is diagnosed a T3BNxMx then he is a locally advanced and from what you describe of his treatment they have and is treating him with a ’possible curable intent’ and then it’s a whole different discussion what ’cure’ is when diagnosed with PC and treated.

Yes, it’s fantastic that you stay so vigilant and try to learn as much as possible and this community and all the people here is amazing.

Best wishes - Ulf

Hi Prostate worrier !

I realize I’m sooo far behand your knowledge and apetite for football but I can confess that I’m rather jelaous of you having such a big interest considering football is so big and you can spend lots of time seeing quality football, different Leagues, Champions and Europa League and etc. 

Happy to hear that they are doing lots of testing, scans and so on and I really hope that you will have a good working treatment plan in a near future 

It’s ok but anyway, they will have me doing PSA and Testosterone no later then 17 of October, so after that I will know.

Best wishes - Ulf

Hi Ulf and Lorraine (Ulfhbg BW ) I have been following your debate.  I stayed on HT even when PSA was almost undetectable but micro mets remained unseen for 5 or so years.  Would I have been better coming off HT? I am unsure but the fact they took so long to reappear makes me think it was the correct decision.  Good luck to both.  David

 Ulfhbg 

Yes he was initially on a curative pathway but that changed while having the RT with the preparation scans. There has been two different consultant opinions on treatment and of course several different people looking at the scans. He had daily prep/positioning scans with the full pelvic RT and that is when the decision to have Abiraterone for life was made. No one has actually said we can see more spread but we were told it isn’t curable. It’s feels vague. I think there’s a point where it could go either way with T3B .

I will look again at intermittent HT. I was really keen about it a while back. I think in a years time it is worth asking again and looking to see where he is without HT just incase there’s a slim possibility of change.

Thank you for chatting about this, just lately we have accepted where we are and because of the medication is working so well, it seems easier not to keep questioning options. It’s now been 14 months since RT, I will ask again early next year. Millibob how do you actually feel now you have come off HT? What has the process been like? Do you feel normal again?  I wonder what the effects of Mr BW coming off HT for a while and then going back on would be like. If it could be difficult to manage.

Thanks all, definitely sparked something to think about. 
Lorraine