Dad recovering from MSCC spinal surgery, what next? - Advanced or metastatic cancer

User

Posted 26 Feb 2017 at 01:41

Hi all,

You might recall that I posted on here a couple of times back in November, when my dad was diagnosed with advanced prostate cancer. We were looking at T4 M0 N1 at the time, Gleason 9, PSA 12.3 - Zoladex was administered, and Tamsulosin and Bicalutamide were prescribed.

Initial response to the HT was quite good, with PSA down to 1.9, but things took a turn for the worse over Christmas as Dad reported back pain and blood in the urine. He went into ER three times over Christmas and New Year, the second and third times each resulting in a hospital stay of about a week while a catheter was fitted and he was 'flushed out' - the tumour had been pressing on the bladder. Back pain kept getting worse, and I did wonder if MSCC was a possibility and suggested that he ask his doctors about it, but it wasn't diagnosed until he went in for a pre-radiotherapy MRI in late January and was immediately kept in for urgent spinal surgery.

Surgery itself seemed to go well, and he has spent most of February having physio and slowly recovering movement, being able to walk with assistance and even shower and use an exercise bike. Then a week ago, he woke up with more blood in the catheter bag, physio was stopped, CT scans were ordered, and the feeling in his legs is deteriorating again. Beyond that we don't know anything.

I only realised today that MSCC causes such a dramatic reduction in survival time. We hoped that chemo and radiotherapy would keep him with us for 2-3 years but now it looks like we have less than a year, although the doctors haven't officially confirmed this.

My main concern at the moment is his mental health, as I can't do anything about his physical state. Dad has a history of mental health issues and finds it hard to trust people, especially doctors. He has a fear of being 'written off' or seen as week and incapable. He's in denial, not about being sick per se, but the poor prognosis, and keeps talking about what he wants to do 'in the future'. There isn't a Macmillan centre in his hospital and I've been trying to get hold of his palliative care nurse from the local hospice to ask about counselling.

Right now I am his only mental health support, because he regards my younger sister as the family baby and won't confide in her, and he refuses to let my mum visit - they are separated (long & complicated story), but she is worried about him and wants to take some of the burden off us.

Apologies for such a long-winded post, this has all unfolded quite rapidly and I'm not sure how to help from here, or what to expect in terms of his care.

User

Posted 26 Feb 2017 at 10:05

Hello Whiskers

I can't advise you I'm afraid but I don't want your post to move too far down the list in ase it gets lost.

I hope you get some reassuring answers

We can't control the winds - but we can adjust our sails

User

Posted 26 Feb 2017 at 17:24

Hello whiskers,
Whilst my husband's diagnosis is nothing like your dad's we are struggling too with mental health issues and my husband is also refusing support from anywhere else so at the moment it all falls on my shoulders which is tough.
I would definitely follow up with the hospice and see if you can get any support from there. If not there may be Macmillan support available locally even if they are not based at your hospital. If you go on their website you can search for services by postcode. For counseling you may need a referral from someone dealing with his care.
In lieu of getting him some counseling or support, because at the end of the day he needs to accept the help himself, make sure you get whatever help you can. Your dad might see your sister as the baby of the family but you don't have to and also your mum can directly support you even if dad doesn't want her help. My parents have been a massive help to me. Looking after the kids and sometimes me too just to lighten the load a little. One of the biggest things I have learned is to take help wherever and whenever it is offered.
Good luck.

User

Posted 26 Feb 2017 at 21:35

You said dad was diagnosed with T4 M0 N1 - is that a typo? Did you mean N0 M1?

If he was M0 then they would not have been looking for SPCC as there was no indication of bone mets. This would be very worrying while he is on HT. I don't think it is just the physical implications of SPCC that raise anxiety, it IS the fact that the cancer is active despite everything thrown at it.

Is he still on the hormones? Which ones? Do they measure his ALP at each appointment and are you tracking it? And do they measure his testosterone level as well? Do you know what it is?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2017 at 00:56

Thank you for your reply. Unfortunately no, not a typo. While the original November bone scan was clear, they have subsequently found several metastases on the spine, and he was definitely suffering from spinal cord compression - two thoracic vertebrae were fractured and had to be rebuilt with pins. So, either the first scan was inaccurate, or the bone mets grew very quickly.

He has been in hospital for the last month, as he isn't mobile. He was beginning to recover some mobility until his setback a week ago.

I don't know if his testosterone levels or ALP are being monitored - the doctors do their rounds before I can leave work to visit him, and so all the knowledge I have is filtered through Dad himself, who isn't always the most accurate or focused when it comes to absorbing what the doctors have to say.

Edit to add: he's no longer being given Bicalutamide. The first Zoladex injection is still active, i.e. it was administered less than three months ago, but is up for renewal very soon.

Edited by member 27 Feb 2017 at 00:58 | Reason: Not specified

User

Posted 27 Feb 2017 at 01:26

Which nodes did they say it was in, when he was diagnosed? The only reason I am pushing on it is that you write his score the opposite way round to the way doctors would, which makes me worry that there was a big misunderstanding in November.

So things to check:
- was he definitely given the 3 month injection and not the monthly one?
- what is his current PSA?
- what is his ALP and testosterone level now?
- if they don't know, when are they going to test him and find out?

You should be able to find some of this out by looking in his hospital notes which should be stored at his bedside because he has a right to see them. Also, leave a message on the ward that you would like to see the doctor when you go to evening visiting. Your dad is seriously ill and you need to be talking to the people who know what's going on.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2017 at 01:31

I think I've just written it the wrong way round, but he was definitely diagnosed (initially) with no bone mets but a spread to the local lymph nodes.

I am going to try and get hold of his doctors tomorrow - I don't want to violate my dad's patient confidentiality, but I can't get information out of him and I understand how serious this is. I need the doctors' input so that I can understand what I need to do in terms of supporting my dad and planning for the next phase of his illness and beyond.

User

Posted 27 Feb 2017 at 21:48

Hi Whiskrs,

I saw your post on Sun but didn't reply immediately as like Lyn I was confused by the the MO and the SPCC because generally it's the mets that cause the MSCC.

This is not an easy ride is it , Trevor was diagnosed with multiple bone mets and lymph nodes in 2013 and I am not going to say our ride has been easy in fact far from it we have done the loop the loop more times than I can mention but we are still here and still walking the walk a little bit wobbly but still walking.

I did connect with your dads mental state in the way he looks to the future all I can say on that is Trevor from day one has always done that and I know he thinks about the worst case scenario and worries about it in his quiet moments but his main thought is ( I can beat this ) Everything will be ok ) They will find a cure ) that's what is called positive thinking and Trevor has that in bucket loads. Plus the Don't tell me the worst case scenario he refuses to listen .

Has that helped him ? I am not sure the only thing I do know is he has outlived my worst case scenario and he regularly talks about the future / I often tell people to live in the moment but maybe that's not the right advice , maybe it should be live in the future.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 27 Feb 2017 at 21:56

Hi all,

We got some clarification today, but the news is not good.

Essentially, dad's cancer is not only very aggressive, but proving to be hormone resistant. So, despite being operated on for MSCC a month ago, the cancer has continued to spread, there are now more bone mets pressing on the spine, and it's spread to his lungs and liver.

He can have last-ditch chemo IF his current chest infection clears up, but it may not work and it increases the risk of dangerous infection. Without it, the consultant oncologist estimates he has three months left. With it, the absolute best case scenario is about 10-12 months, but this is not a likely scenario.

The oncologist assures me that either way, dad will be made as comfortable as possible. So far he's taken it relatively calmly but is clearly processing it through his mind.

User

Posted 27 Feb 2017 at 22:13

Whiskers, so sorry to read this. I hope you find a way to navigate this with the least pain and suffering for you all.
Julie

User

Posted 27 Feb 2017 at 22:20

Don't be afraid. Fortunately nowadays I don't think patients are bound to suffer. New medical policy is caring about pain and suffering. I could see that in my brothers. Suffering was avoided in their cases. They stayed calm.
So sorry for him and for you,
My best wishes.
Lola

User

Posted 28 Feb 2017 at 00:20

Whiskers, did they talk to you about referrals to Macmillan or a local hospice? There are some important things that you may need guidance on, like getting a claim in asap for the terminal version of PIP (personal independent payments - see here https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-pip-claim/how-to-claim-if-terminally-ill/ ) Your dad is entitled to this money and it can help pay for any specialist equipment that might make his life easier - it can also be used to pay for some home care assistance if needed. Both Macmillan and hospices often provide counselling and support for family members as well.

It does seem that some younger men get a version of PCa which is just so pervasive, nothing works. It may be that he has one of the rarer types (which do tend towards lungs and other soft organs and don't respond to hormone treatment) but you might never know why your dad was hit so hard.

You now have to get your head round devastating and shocking news, that you will have a much shorter time with dad than you had hoped. Take stock, take a deep breath and then make the most of every opportunity to create happy memories; there is something joyful in most days and you can store away the smiles and happy chats about the past or his favourite football team or whatever else. Tell him you love him. Those moments will give you comfort and strength for what is to come.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 28 Feb 2017 at 00:24

PS it might be worth looking back at his diagnosis letter - did it say he had adenocarcinoma or something else?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 28 Feb 2017 at 00:24

Thank you. It feels like the calm before the storm at the moment. The palliative care team are coming round to dad's ward tomorrow, to offer support and start planning care; and the consultant oncologist has been wonderful - honest and clear but also very humane and tactful.

User

Posted 08 Mar 2017 at 19:06

Hi,

I could have written this myself bar a few different things. My dad has very aggressive PCa also and after just 2 hormone treatments to "control, not cure", my dad was in hospital over Xmas with mscc. We managed to get him in early enough for him to be mobile still, he had just started losing feeling in his left hand. They said he didn't need surgery but his PSA starting rising rapidly. He has just completed his first month on aribiterone and is doing well. His PSA has halved and he has been out walking almost every day for 30 minutes - no side effects at all. He is quite similar to your dad with his outlook and still thinks he will be back playing golf soon.

Has anybody mentioned aribiterone? Apologies if it's been mentioned and I missed it x

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Dad recovering from MSCC spinal surgery, what next? - Metastasis,End of life / Dying,bone pain

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