Advancing too quickly

User

Posted 29 Dec 2014 at 09:37

Hi all, I am new to this site and not sure how it all works! My partner is 59 and had advanced prostrate cancer diagnosed last January. He was told that it had spread to the lynph nodes and bones. He was put on hormone treatment alone and the consultant put 'watchful waiting' on his notes. We had a really good summer but all has gone rapidly downhill ever since. Psa level rose again in october and then november and another hormone treatment was added.......... Bicalutamide. He was pit on morphine for the pain and told to watch out for signs of spinal compression as his spine is affected. In December we went to A and E as he could not pee or pass stools. An MRI scan revealed spinal compression at T4 and 5 and an emergency operation was discussed however the spine is too tumourised for metal strenghthening to take place. he has had 10 doses of radiotherapy on the spine the last of which was on christmas eve. he has been very poorly with the after effects.

No one seems to want to give us a prognosis so that we can plan for what may happen next and we would like to know how things may progress. i feel like we are in limbo land and no one seems to really know a great deal.

User

Posted 29 Dec 2014 at 11:51

Hi Sue,

Firstly I am so sorry you find yourself here but the positive thing is you will find loads of support from people who are in a similar position. Dont know how much info you have had from your medics but its helpful to look at the PC UK Toolkit and the specialist nurses are good for advice and emotional support.

No one can give you a specific idea of how things will progress, but in terms of preparation for the future, have you been referred to a local palliative care team. No one necessarily tells you these things and when my partner deteriorated I'm afraid it was me having to do the prompting as to where I wanted him referred as not even our oncology team suggested this. The advantages of the palliative care service were that they seemed the only ones absolutely geared up to understand and respond to managing pain, the progression of the illness and what services may need to be put in place, say , if the spinal compression causes limited mobility. Plus, they really understood all the relationship and stress issues affecting us. I so wish they had been around earlier but if I hadnt agitated, we may not have had them at all !

Without wanting to sound overly gloomy, my partners health went down hill really fast, he had lots of complications but I guess my feelings are never to be complacent with this disease. We also got a second opinion nine months after Neil's diagnosis, as I was concerned his treatment plan was too passive for the grade and severity of his illness, again, you sometimes need to be asking for a care plan meeting with your team and to get your concerns out in the open. Information isnt always volunteered.

A number of our members have had experience of SCC or looking after a man affected with this, so maybe worth searching the forum for these threads. There will no doubt be other members along with advice or their experiences and I hope this gives you some sense of not being alone. We are a supportive bunch here so do ask away whatever comes to mind.

Very best wishes, Fiona.

User

Posted 29 Dec 2014 at 13:27

Sue
I am so sorry that you and your Husband are going through all of this, for me it is an all too familiar situation. I cannot help thinking you have been given lttle advice or support throughout. Do you happen to know what your Husbands Gleason score was at diagnosis it will be a number 10 or lower. I am assuming that his PSA level was fairly low to start with if the consultant decided "watchful waiting" with first line hormones was the ony treatment needed.
A spinal cord compression (SCC) causes any number of problems depending on where it occurs the inability to urinate or pass stools is the most common problem associates with T4/5 area of the spine. My Husband had the same issue although his SCC covered a much bigger section of his spine so he also lost mobility.
The fact that the hospital have given all 10 doses of RT is a small good sign, if there is no improvement after 5 or 6 they usually stop. The RT is given to try and reduce the size of the mets and relieve the pressure on the spine and the nerves it is affecting. The urinary and faecal functions are controlled by the same set of nerves and muscles so when there is an issue with one there is often an issue with the other. The side effects can be very debilitating but they do reduce with time and medication.
The most important thing for the hospital staff now is keeping the spine stable whilst functionality is recovered if that is possible. Does your Husband have full feeling and mobility in his feet and legs?
It may be necessary for him to have a special spinal jacket fitted, these are used to keep the stability during movement and can be used for up to 6 months after an SCC. It is only worn when any movement is planned. Mick found his comfortable enough.

The hospital should be working out what physio will also help following the RT.

As Fiona has said I would urge you to ask the hospital staff to refer you to a palliative care specialist maybe they have Macmillan or Marie Curie nursing staff that can talk to you and explain what is happening. They can also give you an idea of what you should expect going forward.
You have not said whereabouts you are ... if you have a local hospice they usually have a team of experts who can talk to you about all the care, support and any financial advice you may need.
I suspect that the Hospital is managing on basic staffing levels over the Xmas/New Year period so make sure you pester them to start finding the support you need.
Like Fiona my Husband did not fare well after his first SCC but that is really not the normal when the spinal treatment is given promptly and successfully, It also sounds as though your Husband's PCa treatement will need to be stepped up once he is stable he may also benefit from receiving biphosphonate infusions to strengthen his bones.
Feel free to ask any questions you might have no matter how awkward they might feel.
best wishes
xx
Mo

User

Posted 29 Dec 2014 at 21:16

Hi Sue
Welcome to the forum, I can't add anything specific about SCC as you have had some great advice from two people who truly know about this, but I wanted to add my voice to the need to get a palliative team in place. It will make life much better for you both.

With love
Allison xxx

User

Posted 29 Dec 2014 at 22:01

Hi Sue58,

Saddened to read that your and he are here with your current situation.

In my, very fortunately, limited experience of cancer and, even more fortunately, limited experience of the latter stages I do to know what stage you are both at and what can be done to help you.

But, I do know that if you get the right help and support, Macmillan and or palliative care, they will know what will likely or probably happen and when, and may be able to give you a time. We none of us want to know when we will die, but almost perversely, it is the first question we want answered, when will I die, how much time do I have left? Well, it was with me.

My ex wife died from pancreatic cancer. She had Macmillan in attendance and they predicted to within an hour each way when she would pass away. And they were right.

If you want a "time", speak to a Macmillan or similar. Doctors and there like seem never to comitt to a time, maybe the are scared of getting sued, maybe they are told not to tell?

All I do know is that you should get all the help you can to help you both.

ATB

Dave

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