Which H.T. if any, is the least onerous but still effective?

Thanks Alwayshopenand Worriedwife for the time you have taken to sketch out thoughtful and relevant responses. 

Thanks Sandberg for the reference on Decapeptyl vs Zoladex.  I will keep that in mind.

Alwayshope, your husband's health situation is very relevant.

Worriedwife, I fully understand how you feel about having your husband around.  We are a tiny family, and basically have been a self-sufficient twosome throughout our lives, so I need to be here for my wife.  

In 2017 I had a rare kidney cancer.  My prognosis was 6 to 9 months.  I was recently discharged with no further follow-ups.  I was told it was 'unlikely' to return, but there was no guarantee.  So here I am minus a kidney and in my late 70's with PCa - although not 'absolutely' confirmed yet, apart from a suspected 14mm tumour, PSA over 14, and apparently a 'normal' DRE.

There are so many individual variables and benefits/disbenefits to factor into the decision-making process..  I have always kept myself fairly fit and healthy with a good BMI and sharpish mind.  I don't want to lose that and take other potentially negative health issues on board in order to provide a possible 3% to 7% benefit if it was an intermediate-risk PCa for example.  

Given my age as well as health history and characteristics should I be optimistic about another 5+ years anyway?  Under the circumstances should QOL considerations be a more weighted factor?

As an addendum.  Alwayshope, you mention discussing matters with my 'medical team', what is that?  With the kidney cancer, I only ever met with an oncologist.  For the past 3 years contact has been purely by telephone call.  In the current PCa scenario, I have yet to have a face-to-face with a specialist!  The only face-to-face I have had, if it can be called that LOL, was with a consultant who performed the transperineal biopsy.  I don't believe he was specifically assigned to me.  It was obvious he was on the clock immediately after the biopsy, as there was very limited time for a discussion.  I have been told I will receive a telephone call with the biopsy results.  It will probably be with a specialist urology nurse as she has been my only one contact, and by telephone, so far!  

My wife who was treated for breast cancer coming up for 4 years ago, never met with her oncologist.  She had one brief post-surgery telephone call.  The breast surgeon did not want to speak to my wife in the ward after surgery until she insisted.  She subsequently received 2 - 3 follow-up calls with a breast cancer nurse.  She has been discharged.

Oh for a 'medical team' to discuss matters. We are not well served in our region.

Dedalus

Hi Dedalus,

We are only 6 weeks since diagnosis but things are moving fast so I can clear few things from our experience.

My husband diagnosed with advanced PC into the bones and nodes. What we were told that the choice of HT is regional depend on the supplier. What I mean is: My husband received Zodalex every 12 weeks which is similar to other injections or even the same as other injections in other regions. 

As for the MDT or oncologist team. In our region and I think everywhere in the NHS they will not hand you over the 2nd generation HT pills without a meeting face to face with the team. My husband HT is enzalutamide and he will start on this on 8th Jan only after meeting the team, checking his blood pressure etc. The supply of this HT is always involve meeting the team. You cannot get it in the pharmacy or GP and one of the reason is that is very expensive.

As for side effects; 6 weeks into the treatment after 28 days of Bicalutamide tablets and 1st Zodalex injection:

The only side effect is night sweat which started a week ago and easily controlled by changing the bedding to Bamboo which is more breathable and cool. Nothing else so far. Oh and there is one good side effect: He need to visit the loo less at night. Less pressure.

I wish you good luck and better 2024!

Lots of love

Dafna from Brighton

Thanks Dafna for the information re the type of HT and the side effects.

My best wishes to you both.  It is a 'couple' thing after all!

Dedalus

I just need to vent.

As I mentioned up thread all my investigations have been slow.  My elevated PSA was discovered in July 23!

It is 5 weeks today since my biopsy so I telephoned.  They have had the results since the 26th December but are still not in a position to disclose them.  The soonest I will receive them is week 6, but if they have to be discussed by an MDT it may be week 7!

I don't live in a doctors' strike region.  This is the new norm.  It seems we have to just grin and bear it, despite the potential for PCa advancement and thus the associated stress of waiting for test results and eventual treatment.

Dedalus

Hello Dedalus 

May I suggest you contact your hospital PALS team (Patient Advisory and Liaison Service). Tell them of the continued delays and that it's now causing undue worry and anxiety..Tell them of your other health issues.

I hope this helps - Best wishes - Brian.

Thanks Brian

I'm afraid I have lost faith and confidence in the system, including the complaints process.

I believe that we now live in an NHS culture in my region particularly, and generally, where the staff frequently complain of being overloaded this has become accepted by staff, management, and the public.  This therefore excuses all ills.

When in the past I have complained directly to staff over poor treatment, they actually encouraged me to make it formal.  I believe there is now a culture where they believe that they are working with processes and procedures beyond their control, so shouldn't/can't /won't be criticised.  If they are then it is simply shrugged off as being the new norm.

My regional hospital which is the only one I am generally permitted to attend is constantly publicising its staff shortage and other problems, with the implication that we the consumer will have to accept it.

Unfortunately, we are a captive market and can't vote with both feet as we can/would do in other consumer situations.

I have read of others' complaints experiences and they waste energy to not much avail.  Many patients and their advocates also tell of a vindictive and hostile response due to complaining in the wards and through channels.

I also believe that many cancer patients end up with less favourable outcomes including premature death, due to the forgoing.

Sorry to sound so defeatist but that is how I genuinely feel.  Quite powerless!

Dedalus

Hi Dedalus,

So sorry for all these delays in diagnosis and waiting to know which is horrible time.  When we hit a brick wall with the NHS  we go to one off private consultation. We check who is the best consultant in the hospital and we just do a one off meeting. I check first with his private secretary if the consultant has access to our NHS files and results. I know it is not supposed to be this way but from my experience it is worth it. If you can afford it, it will help you great deal. Also, there is nothing more comfortable that seating in a private consultant room with all the time in the world for questions and reassurance. 11 years ago I had a brain injury. For 3 months my GP at the time, the hospital, A+E etc told me I have nothing. I Went to see a private neurologist who hospitalized me immediately with the NHS and saved my life. The only thing, the consultant need to know that it is a one off and you have to be treated by the NHS.

Good luck with everything

Lots of love

Dafna from Brighton

Thanks Dafna.

That is good advice under the circumstances. 

Dedalus