MSSC diagnosis

Hi California2018,

Thanks for getting in touch with the online community. My name is Penelope and I am one of the Macmillan Cancer Information Nurse Specialists.  From your initial post to the spinal cord tumour forum, I see that you have had steroids to help relieve the pressure on your spine. I hope that this treatment has helped. If your symptoms are persistent or worsening, we would suggest getting urgent medical advice today from your GP, NHS 111, 999 or A&E.

Our information on malignant spinal cord compression (MSCC) outlines the symptoms to be aware of such as pain, altered sensation in the fingers or toes, problems with passing urine/ constipation and legs being weak or unsteady. As you may be aware if MSCC is left untreated then it can cause permanent disability. It is important to raise your concerns if you feel that the symptoms are still present following the steroid treatment.

I am sorry to hear that there were delays in diagnosing your MSCC and that the recent biopsy was inconclusive. We would suggest speaking to the hospital again to find out what the next steps are towards a diagnosis. If you have the name of a consultant or clinical nurse specialist (CNS), you could contact the nurse or consultant’s secretary to ask for more information. If you do not have these contact numbers, you could call via the hospital switchboard.

If you do not know who to speak to the Patient Advice and Liaison Service (PALS) may be able to help you. They help to resolve problems and concerns about the NHS. You may also like to look at our raising your voice toolkit. It is designed to support people who have experienced delays in cancer treatment or care. It links to further information on the rights of an NHS patient and how to prepare for conversations about your care.

Sometimes it can be hard to know the best way forward. If you would like to talk things through in more detail please get in touch with us on the Macmillan Support Line and choose the option to speak to a nurse.

Best wishes

Penelope, Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref/ DC 

Thanks Penelope,

i realise that it is MSCC not MSSC as I said.

You have been very helpful in my anxiety, as I go to my local hospital’s haematology’s department on May 4th to start having blood tests and hopefully find results from a recent PET scan. I am booked on May 22nd to see my consultants spinal team at Salford Royal Hospital where I stayed for 6 weeks. 
I was getting concerned of the time delays but feel reassured by what you have said. I continue to wear a back brace to protect my spine. One of the vertebrae was infected by the cancer where they took the initial biopsy.  
Symtons do not appear any worse, only moderate back pain.

Thanks again for your advice

Hi California2018

I am glad you found the information helpful. It is good that you have dates for further blood tests and appointments. As the 4^th May is still some way off, please don’t hesitate to get in touch with either the hospital team or your GP if you are worried about symptoms or need more information about your care. As mentioned above for any persistent or worsening symptoms please call NHS 111 or 999 if symptoms are rapidly changing.

You may also like to look at our information on all the ways that we can help to find out about other Macmillan services available.

Best wishes

Penelope, Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref/ KDf