SCC - implications for further treatment?

Email this conversation Print this conversation

User

Posted 06 Mar 2015 at 20:28

Hi all,

My dad was rushed into hospital a month ago with excruciating back pain and jelly legs. After over 20 hours of poking and prodding, he was finally diagnosed with spinal cord compression (even though the hospital staff were told that was the reason he was coming in). He was prepped for surgery and the tumour was removed. The first few days were good but then he lost the feeling in his legs. Another X ray and he was rushed back to surgery to flush out a massive internal bleed at the initial site of the tumour. Unfortunately the damage was too great and he is now paralysed from the waist down.

He had just finished his first round of chemo, and apart from the recent back pain, he is fairly well. Does SCC prevent further treatment for his cancer? I was hoping that further chemo or maybe abiraterone or enzalutamide might be on the table if we needed it. He was diagnosed with a single met to his back (and the tumour has now been removed). Does anyone have any experience of treatment after an episode of SCC? It's 3 years since dx, and apart from the obvious issues with mobility, he is well - I can't cope with him being consigned to the "nothing more we can do" pile just yet.

Hope you and your loved ones are well,

K x

User

Posted 07 Mar 2015 at 17:45

Hi there

I am so sorry to read of your Dad's progression, Having an SCC is a very traumatic experience. There is no point in me asking retrospective questions, what has happened and where you and your Dad are now is all that matters.

If your Dad's cancer is under reasonable control with the treatment he is receiving the fact that he is now paralysed from the waist down should not preclude him from the same treatment as anyone else with full mobility.

You say he had already started chemo, depending on how well he is recovering from surgery and how physically strong he is that might just be able to recommence. As you say Abiraterone and Enzalutamide and other treatments may be viable later.

Is your Dad still in hospital? and is his regular Oncologist seeing him there You should try and be with your Dad at his next Oncology review so that you can ask all of yur questions. If he feels uncomfortable with you there then ask if you can see the Oncologist after your Dad as long as your Dad says he can share information then he should answer any questions you might have.

I am not sure how much help you have had from Occupational Therapy or others to give your Dad as much normality as is possible. There are so many things that can help physically, emotionally and even financially.

I will keep a tag on your post so that I can add more when you have had any further comments and maybe have posted a little more information yourself.

thinking of you

User

Posted 07 Mar 2015 at 18:28

Hi K,

It might help to ask the physio / OT if your Dad can have a neurological assessment to establish objectively what his level of functioning is because this will a have implications for his further physical care. I chased this up for my partner when he had SCC because as serious as this was, the staff were making assumptions without full investigation and if there was a tiny chance he might have had some functioning I wanted to know for the benefit of his emotional well being as much as the physical side of things.

Thinking of you both,

Fiona.

User

Posted 07 Mar 2015 at 18:30

I think when K said his first round of chemo, that was actually a full 6 month programme which he completed before the SCC occurred. Hopefully, Enzo or abby-tabby will now be on the table for him x

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

User

Posted 07 Mar 2015 at 19:01

Thank you all for your replies so far - it has been a very difficult time for my parents and I. My Dad's onco has said he is happy to wait until my Dad has gone through rehab with the physios and OTs and is at home before deciding what to do next. My only concern is his cancer will start to run away with him again during this time - I imagine rehab will take a matter of months at the very least. I don't know if the tumour had already established itself in my dad's spine before the chemo commenced - HT had failed and it was 4 months before chemo was decided as the next step. Maybe it was only kept quiet while he was getting transfusions. His PSA did rise approximately 6 weeks after chemo finished, which is when the SCC occurred.

I assume the SCC will be seen as progression and a failure of standard chemo - I just hope we can secure either Abiraterone or Enzalutamide as a next step.

With regards to the paralysis, the doctors have gone for "probably it's permanent, but maybe not". I'm not sure what the physio/OT approach is at the moment, I will ask the next time I am at home.

Best wishes to you,

Kate

User

Posted 07 Mar 2015 at 19:58

Kate

I'm so sorry to hear this news, you and your family have my utmost sympathy. SCC is such an awful problem for some men with Pca, it's alway at the back of my mind, especially after seeing a report talking about one of the tumours nearly touching the spinal column (we saw this by accident).

I can only hope that your dad makes a recovery that means he can still live a good life, I would think that the doctors will prescribe either enzalutimide or abiraterone as soon as dad is up to it, I'm sure they won't leave him to suffer.

Thinking of you

Love Allison xxxx

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.