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Advanced Prostrate Cancer diagnosis 4B - up and down and feel left in the dark

User
Posted 09 Sep 2022 at 17:44

Hi, 

This is my first post so apologies its a long one. My husband aged 59 was diagnosed with the above in June 2022 he was given the news by a Urologist, he is classed as having stage 4B as the cancer has spread to three of his ribs. Anyway we were offered a cup of tea and had a 20 min talk with a Urology Nurse, given a file full of booklets to take away (all full of doom and gloom) and since, it feels like we have been left in the dark. We are both still working and have two teens at home. Occasionally I feel normal, but I am struggling to sleep a lot of the time and I cry a lot it all just seems so unfair. 

Anyway two days after the diagnosis the same nurse phoned and said the MDT had decided he would be having Radio, Chemo and Hormone Therapy. He had his first injection mid July which lasts for 6 months. His next contact with anyone was a tel appointment with a Dr with a strong foreign accent and an abrupt manner. 

We received a call last week about an appointment at our local cancer centre and thought oh great someone will give us some time and more info about what we can expect in the future etc. He got bloods taken on Tues PSA down from 14 to 0.3 something and we had an appointment with a nurse for an hour on the Thurs to explain about the tablets and his treatment plan. But basically this nurse could barely answer any questions, no one else was available and she just seemed to be ticking boxes on a form with very little medical knowledge.

My husband started taking Enzalutamide today and this is him for the foreseeable until the tablets stop working. He will have regular blood tests every month which he has to book at our GP’s, collect tablets every 28 days and a nurse will phone him every 28 days. He has been given a booklet, a helpline number and a letter to give to any medical professionals should he need any treatment and thats it. 

I don’t know what I was expecting but this feels so wrong and inadequate. My husband wants to carry on as normal which I am trying to do for his sake but its not easy. 

Thanks if you made it to the end of this long rambling post. Is this normal in terms of care and support? Today has been a hard day after yesterday’s disappointing appointment, our first dance wedding song coming on the radio, listening to sad lyrics to other songs following the death of the queen last night and thoughts of my son moving away to Uni later this month and missing him. 

x

 

User
Posted 09 Sep 2022 at 19:15

From your words I can see how you're feeling and I empathize with you X.

No good news the diagnosis, but you better focus on the fact that PSA has come down, I guess it means the treatment is working. Luckily these days big deals of new therapies are appearing continuously and spread PCa can be controlled and become chronic for long. I'm sure you will soon have response from some guys here who have been living with this disease for long following the appropriate treatment. 

Stay strong, over time we get used to living in a new scenario and coping with the situation. 

X

 

 

 

 

 

 

User
Posted 09 Sep 2022 at 21:28

I'm sorry the two of you are going through this.

I would suggest you call the original nurse you spoke with, who is probably a uro-oncology clinical nurse specialist (CNS), and ask for a chat about what's planned, and ask about the chemo and radio therapy. They may be doing the Enzalutamide instead of chemo at this stage, but you obviously have a right and expectation to know what's planned.

He is currently on the standard of care for metastatic prostate cancer. If he has a low number of mets, they may offer radiotherapy to the prostate too.

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User
Posted 09 Sep 2022 at 19:15

From your words I can see how you're feeling and I empathize with you X.

No good news the diagnosis, but you better focus on the fact that PSA has come down, I guess it means the treatment is working. Luckily these days big deals of new therapies are appearing continuously and spread PCa can be controlled and become chronic for long. I'm sure you will soon have response from some guys here who have been living with this disease for long following the appropriate treatment. 

Stay strong, over time we get used to living in a new scenario and coping with the situation. 

X

 

 

 

 

 

 

User
Posted 09 Sep 2022 at 19:33

Thank you for replying. Yes I am pleased his PSA has reduced and that is a positive to hang onto. I guess I just want some hope for the future, confidence that my husband is receiving the best and most appropriate treatment and finding a way to live day to day with this knowledge. 

We would like to have a small holiday or a weekend away to look forward to but I feel like our life has been put on hold. I have no idea how costly and easy to acquire holiday insurance would be in our new situation and when would be a good time to arrange things (as the potential side effects from his new tablets sound scary). I also feel that since June our life has largely been on hold (apart from a week away in Scotland last week when my husband had gout for half of the week, was in pain and could hardly walk and trying to get medication agreed from our Dr’s in England to a chemist in Scotland was a nightmare, so it wasn’t the best). 

User
Posted 09 Sep 2022 at 21:28

I'm sorry the two of you are going through this.

I would suggest you call the original nurse you spoke with, who is probably a uro-oncology clinical nurse specialist (CNS), and ask for a chat about what's planned, and ask about the chemo and radio therapy. They may be doing the Enzalutamide instead of chemo at this stage, but you obviously have a right and expectation to know what's planned.

He is currently on the standard of care for metastatic prostate cancer. If he has a low number of mets, they may offer radiotherapy to the prostate too.

User
Posted 09 Sep 2022 at 21:36

Thank you for your reassuring reply.

Yes, I thought the nurse had a similar role to what you describe but when my husband contacted her to ask she just said he would need to speak to the cancer centre (our cancer is relatively new and I recall someone saying it was ran by another trust, so maybe they don’t want to tread on anyones toes). 

 

 

 
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