Puzzling PSA increase (Part 2)

Hello Chocaholic28 

Many thanks for your update - I am so sorry that things are not going to plan and can fully understand your feelings at the lack of both information and positive meetings to try and make some progress.

Have you thought of contacting the hospital PALS (Patient Advice and Liaison Service) - their contact details should be in the hospital directory. This is the firs step to take before making a formal complaint regarding the lack of both information and treatment. I have put a link below to "Understanding your Cancer Care Rights".

https://www.macmillan.org.uk/cancer-information-and-support/get-help/raising-your-voice-toolkit/understanding-patient-rights

I hope this helps - if I can do anything else for you please let me know.

Best wishes - Brian.

Good morning Chocaholic28 .

I am wondering if a quick letter to the consultant might ensure that you get to see them next time. Explain that you have been given confusing information about the possibility of changing ADT, then being told to stop the Abiraterone but given no information about the steroid (it can be dangerous to just stop it). Also you need to discuss with them the next options. Docetaxel has been suggested but will this be on its own or what is the consultants opinion of adding Enzalutamide or a different second generation antiandrogen at the same time to hit it hard and hit it fast. Another question to ask is whether targeted radiotherapy to the lymph nodes might be a possibility.

I have been following my husband's testosterone during his treatment over the last 4+years and have noticed that it does bounce around a bit. With the UK scale I believe that the castration level is below 1.7, but preferably below 0.7 so it looks as if the Prostap is still doing its job. My husband has had 3 recurrences so far and we have been told that as long as the Prostap is still working then he will remain on it and they will use different treatments to try and keep on top of things.

Thank you very much for your reply Brian.  I think we’d rather start off by complaining to the consultant next week rather than going straight to PALS.  I would certainly be having strong words if I was the patient but hubby is in this case so I feel it really has to come from him.  I don’t want to sound like the domineering wife!  He’s been inclined to go along with whatever the consultant says up to now; however, it seems sometimes that he and his team don’t discuss the cases and each has their own ideas.  One doctor mentioned chemo back in August, the consultant waved it aside as too early, and now it’s back on the agenda.  We just want a definite plan of action and to be able to ask questions and voice concerns - and understand the answers. 

If chemo is on the cards, shouldn’t he have a specialist nurse assigned to him, as happened when he had lung cancer last year?  Just to be suddenly handed three pages of information about Docetaxel side effects was a bit of a shock.   

Good Evening Chocaholic28 

I can understand you wanting to speak to the Consultant, unfortunately it's a bit of a lottery if you have a good one and they love to delegate.  As long as you have your list of questions for the meeting and all the "what if's" I am sure you will be fine. I always try and be proactive and fight everyone's case as if it were my own!!

Yes If he is having Chemotherapy depending on your health authority he will have either a dedicated nurse or a dedicated team.

We have two Community members going through Chemotherapy as we speak and they have written a diary or blog - here's the links, you may find these useful:

 The Beginning 

 community.macmillan.org.uk/.../my-story-up-to-my-chemo-beginning-to-give-you-the-background

I do hope these help - if I can do anything else for you please let me know.

Best wishes - Brian.

Thank you Alwayshope.  We have a list of queries to ask next week.  We need to pin them down to a final decision on a plan, rather than the constant changes we’ve been having this year. 

We had been hoping that they would change the Abiraterone to something like Enzalutamide when the PSA started rising.  There was talk of changing the Prostap to Degarelix in April, which never happened, and then to Zoladex after his next Prostap injection in August, which also never happened because they said it was still reducing the testosterone.  It’s interesting to hear that your husband’s is also being controlled by it.  We don’t know at present whether it is still reducing.  Our main concern has been the PSA rise and now the spread into the lymph nodes.  We were told us that they are behind the spine so we don’t know whether that would mean he couldn’t have RT - another question. 

As regards the steroids, we did hear him say the steroids should be continued but we already knew that you can’t suddenly stop taking them.

Hi Brian, His consultant is definitely one of the delegating types!   I’ve looked him up and he seems to have fingers in a lot of medical pies. 

Many thanks for your help and the link to the blog.  We’ve already been looking at people’s experiences on the site and their helpful advice. We realise that the doctors have to give you the worst case scenario but it really does vary as regards how well people tolerate the side effects.

The problem is that, although he was told it was incurable when it returned, he was lucky that it was caught in time and he’s been sailing along complacently for nine years on the 3 monthly injections, and whenever the PSA rose, a change of HT would soon knock it back down again for a year or two.  Which was what he was expecting to happen this year when it started to rise again in January.  He knew that he can't outrun the cancer for ever but was hoping it could be controlled in that way for a while yet. 

Kind regards.

Hi Brian, 

Just to let you know that we finally got to see his consultant today.  After all the conflicting info he’s had recently, it’s definitely been confirmed that unfortunately he does need chemo and will be starting it in November, after our holiday.  He’s also finally having the Prostap replaced by Zoladex as had been suggested vaguely over the past few months but never happened. 

He’s to have 6 rounds of Docetaxel, which is a little worrying seeing as people’s blogs mention them only having 5 and really floundering after the last one but I suppose they’d cancel it if there was any real difficulty.  We realise it’s going to mess up  our lives for a few months but fingers crossed it’ll clobber the cancer for a while. 

As you suggested, I’ve been reading the blogs and will make notes of the various hints and tips in them just in case.  Thanks for all the support and helpful links you’ve given us.  Why am I doing all this and not him?  Well, he just doesn’t do forums – finds them too scary! 

Best wishes.

Good Morning Chocaholic28 

Sorry for the delay in my reply - we have just moved over to our place in Turkey for a month of warmth before winter sets in - I can't be doing with cold these days .

It's great that you have seen the "main man" and that you have a plan going forward. I do hope it works for you both I will be following it with interest (I am just coming off 3 years of HT and with an initial PSA of 182 - well I don't know what to expect!!).

There's plenty of support on the forum if you have any questions, we also have this forum which you may find of use- (link here)

 Chemotherapy forum 

Chocaholic28 said:

Why am I doing all this and not him?

There's a simple answer to that - he's a man. Just look around the forum - we are outnumbered by wives and partners - but without you all we would still have our heads in the sand. At the start of my journey, there was "nothing wrong with me" - it took Mrs Millibob to get me to the GP and thank god she did!!

Best wishes - Brian.

Hi Chocaholic28 , glad to hear that at last you managed to see the main man and now have a treatment plan.  Most of the guys on here seem to get through 6 rounds of Docetaxel without much trouble, but everyone is different and our bodies tolerate different things.  Take it session by session, write a diary (you can use your profile on here) so that you become aware of how each cycle progresses and what to expect next time (it helps planning your social events/work).  Most of all, have a lovely holiday beforehand. Best wishes, David

Hello Chocaholic28 

Glad to hear that you have finally pinned down the consultant and got a plan. The first thing to do is have a lovely holiday (are you going anywhere nice) which will really set you up for the Chemotherapy. 6 cycles is the norm and most people manage to get through it. After the holiday come back and we can walk you through some of the precautions and tips that we found useful. My husband was dreading it but at the end he did say that it wasn't as bad as he had feared.