Advanced PC with bone mets: Husband has new symptoms - right side of head - and PSA rising (though still low) - should I metaphorically be pushing medical buttons?

Hello Christine (Tendzin)

A warm welcome to the Macmillan Online Prostate Community - although I see you have been "stalking" us for 6 months  - I am pleased but at the same time sorry to find you here.

I have taken some time to read through your husbands journey and your post and you are an amazing "rock" in your support for him - he's not having an easy time at all.

From a personal point of view I find that my GP practice is out of it's depth when it comes to cancer - especially with me also being type two diabetic - you know they are having problems when at a meeting the senior GP said to me after reviewing my issues "what do you think we should do Brian? I think your husbands issues are complex and not being a medical person I would say not all caused by the cancer - some by old age and general wear and tear. I would be asking the GP on Wednesday if he has an action plan - putting "alright for this patient" on your husbands records is just a get out!!

I would strongly advise you to contact your oncology department - I think you need to make them aware of your husbands issues, make them aware of your worry and anxiety and ask is there a plan for further treatment - clearly the PSA is on the rise and it's worrying.

To me cost should not be a worry - we all contribute to the NHS - it's just that some of us now need it more than others.

I don't think you are over reacting or interfering - you are his wife and you have his well being at heart.

Feel free to post any questions you have - you will know we aren't a bad bunch - we have a bit of fun when we can but we are serious when needed - welcome to the Community - it's OUR community.

Best wishes - Brian,

Hello Brian Millibob 
A quick reply for now to say very many thanks for your prompt and thoughtful and welcoming and caring reply.
And I wasn't sure if that rise in PSA was something I should highlight to the medics (as his actual PSA of 1.1 is still a 'safe number') - as they don't seem to have picked up on it. So it's helpful to see you describe it as 'worrying' because that makes me feel that it's at least worth me mentioning it to them, without them thinking i'm being a hyperchondriac!
Best wishes - Chris.

PS - on the humorous side, hubby has never felt bothered by the Prostap and it makes him laugh that at least we now both share hot flushes and brain fog :)

Good Morning Christine (Tendzin)

I am a great believer in "nipping it in the bud". He's had 2 PSA rises , intervention is usual at the 3rd consecutive rise. He's a Gleason 9 (I am also in that club!) and he's a T4. For me - I would like to know what's going on!!

Oh yes the HT is fantastic - if you can laugh at the side effects you are a winner. My 34 year old daughter claims my "moobs" are bigger than her "boobs" and now none of my girls can use the phrase "Dad you don't understand a woman's problems" - - - because I DO.

Best wishes - Brian.

Hello Christine and congratulations on coming out of the closet!!!

I am not a prostate cancer medical specialist but I will try to answer your questions from my own position as a 'constantly worrying wife'!!!

1. your husband's symptoms of headache, tinnitus, dizziness, raised blood pressure etc would be worrying me! It could, after all, be something totally disconnected from the prostate cancer needing medical attention . So, it's good that you have an appointment with your GP tomorrow. I am wondering whether some of his symptoms might be due to his own anxieties or something physical such as vertigo due to an inner ear infection going on?

2. Your input. Prostate cancer is a couple's illness! But, all illnesses impact on partners and family! My own work has been and continues to be within the health care sector and, as my husband said, I know the 'jargon'.  Like you, I really worry about taking over. any consultation is his consultation but he feels unable to fully put forward his points, ask the right questions etc. As he is also deaf, he finds it very hard to understand the questions the doctors ask and the replies to our questions. So, what I do is 'interrogate' him before we go to appointments. I usually ask the following:

1. Does he want me to be with him or would he rather go alone

2. What questions or comments does he want to make?

3. What does he want and not want the outcome of the consultation to be in terms of continuing treatment to be?

If there is a lot he wants to know/say I make a list but not if it's just a few things. I also suggest things he should be querying and we agree to include or omit. So, I know exactly what he wants from the consultation. When we get there I usually leave him to do the opening remarks etc and see how much he can or cannot say. When he 'dries up' (as he usually does!!!) I ask if he wants me to take over. So, at all times, he has the control of his consultation and I am the mouthpiece. We both listen to the replies and he makes decisions. He will sometimes miss important points and turns to me for advice. I explain and then he makes the decision.

So, interfering - yes! Domineering/controlling - no. It works for us because after 50 years of marriage we know how to work together. It might not work for others!

Re how the NHS is operating now. Things have changed and remote consultations are more common than ever before. However, although some people think this is far better and saves on time and travelling to appointments, others don't like them and prefer the face to face consultation, with some thinking that a doctor needs to see the whole person and not just hear the voice to arrive at a clinical decision, and then there are others who have hearing issues or don't have the right technical equipment  etc. 

From your post, I would suggest a list to discuss with the GP tomorrow to include:

1. The head/brain/tinnitus/balance symptoms - further investigations? Treatment for vertigo symptoms?

2. The frequency of PSA blood tests and the rising PSA given that your husband has prostate cancer and is on HT which should be keeping the PSA from rising

3. The non-replacement for the cessation of apalutamide

4. Your need for closer and more frequent monitoring and, I think, your suspicions that the NHS might be denying closer monitoring due to cost pressures and long waiting lists?

Hope this helps and hope all goes well tomorrow. Hopefully your GP will see himself/herself as the intermediary between yourselves and secondary (ie specialist) care.

Good luck and do let us know how things go!

You really need to get in touch with the Oncology team and let them know about this rise in PSA and all the other issues.  The other issues may or may not be cancer or cancer treatment related but they certainly need to be aware and able to check them out should they need to be checked out by them.  As far as your appointment with the GP goes I would make sure that your hubby tells the GP the symptoms and what has happened exactly as he has told you - make sure nothing is left out - sometimes its good to write things down as a reminder to you and also write down any questions you need to ask the GP about further action etc and also write down the answers too.  I have done this and quite often the GP or consultant has said that he will write the answers down for  me and explain as he goes along.

Brilliant worriedwife.  I am partially deaf and if there is other noise around quite often miss things or if someone changes a topic quickly I am not always aware of it so often come away from conversations with a weird recollection which my wife has to put right - in fact she often says she feels like she is interrogating me afterwards as I have come up with some weird and wonderful interpretations of conversations  

I really do not like telephone consultations as need to be able to see the person I am talking to.  In the times during lockdown when I had to have them I always had to include my wife as I just could not follow the conversation.  Now I always ask for face to face consultations.

It is amazing how many people are bad at commuication - not speaking clearly or looking at you when they are speaking to you even when they know you can't hear properly.  The worst thing in the surgery is when the doc shuffles paper - looks away at his screen or something and carries on talking or holds something in front of his face or covers his mouth- no hope of hearing what he says or keeping up with the conversation after that.

Totally agree with you Freefaller.  My hearing isn't as good as it used to be, & although I wear hearing aids I still get my husband to listen to any telephone calls in case I miss something or more often mis-hear.  In the latter case it's surprising what words the brain comes up with when it tries to make sense of what it thinks it has heard which makes for some wonderful off beat conversations. It seems staff aren't given sufficient training on how to manage a phone call & often gabble away far too quickly even after you have told them about hearing issues.

Hello Freefaller, my husband wears hearing aids and, for telephone calls, he always passes the phone over to me as he misses out on what is being said. He finds it exceedingly difficult to hear and understand anybody with a non English accent or, indeed, a very strong English accent. I wish they would restart video consultations because there is a better chance of understanding when you can see body language, facial expressions etc.

of course, mask wearing in hospitals makes things ever harder!usually go with him to appointments. We discuss his questions, needs, wants etc before going and then I usually end up doing the communicating for him. But… this is not right. He is an adult and being disempowered be he is deaf!