Looking beyond a patient’s primary diagnosis

Categories: Care.

My shoulder has finally stopped hurting and I can actually get into and out of clothes without help. My cat Stanley can lay on my left side and I can sleep through the night instead of waking in extreme pain.

This has been such a relief, as my shoulder and arm have been very stiff and sore for the past 18 months and it has significantly affected my quality of life.

So what was the problem, I hear you ask.

I have widespread boney metastasis and am currently treated with capecitabine, an oral chemotherapy, to keep it in check.

Touch wood, this, together with a monthly pamidronate infusion (now replaced with a 6 weekly denosumab injection) to help strengthen my bones, seem to have been doing the job well for the last 11 months.

The pain in my shoulder started about two years ago, a scan showed that there was cancer growth and it was treated with a short course of radiotherapy. This seemed to help the bone pain but over time my joint became increasingly uncomfortable and I started to need regular medication.

The odd thing is that when you have cancer, with every new symptom you experience, both the patient and the oncology care team will always link it to your diagnosis and to a potential increase in tumour spread and growth.

My sore shoulder seemed to be linked to the metastasis found and the fact it was causing me great discomfort and increasing disability just seemed another one of the things you find you have to put up with when on treatment for a terminal disease.

This wasn’t in fact the case.

On further discussion with my oncologist we decided that the best way forward was for me to see an orthopaedic consultant who specialises in the shoulder joint.

When he reviewed my scans, and his physiotherapist the movement possible in the joint, it became clear that the problem with my shoulder had been caused not by the cancer but by the radiotherapy used to treat it.

My very frozen shoulder could be treated by injecting fluids into the joint to free it up.

I had this simple procedure three weeks ago and it has made an incredible difference to the flexibility of my shoulder and has reduced the pain to an acceptable level. It feels like a miracle and I am so pleased.

So why am I writing about this happy event here? 

This experience has just made me think about how many people there maybe out there with terminal disease who are also struggling with symptoms that they believe are part and parcel of their disease.

Obviously, staying alive and being on treatment is very important and cancer units are very good at treating the immediate side effects linked to this. However, they don’t always seem to see that not everything is caused by the patient’s primary diagnosis.

This happens across many different long-term conditions. I have had insulin dependent diabetes for 42 years and find that, in healthcare, it is either completely overlooked when I’m being treated for something else or is blamed for every symptom I experience, which is very irritating.

What I feel would be useful is more information concerning longer term treatment side-effects for both those who are cured and for those who are not.

People now live longer following treatment for cancer and in many cases it remains unclear what long-term damage these interventions may have done. 

Palliative care also needs to consider its role here for those who have a terminal diagnosis.

They already concentrate more than hospital services on quality of life in the here and now and for those that are not at the end of life but living with dying.

As patients start to live longer there will need to be greater emphasis on making sure that the problems they experience are not automatically assumed to be a consequence of their disease and treated where possible. 

I have had extremely stiff hips for some time and again assumed this was caused by cancer scarring in the joints.

Following the miraculous experience with my shoulder I now wonder if this may be a side effect from radiotherapy which could also be treated?

I’ll certainly be asking for a referral to a specialist musculoskeletal physiotherapist to assess my other stiff joints to see if there is anything else that can be done to help me physically. Here’s hoping my hips can be as simply sorted out as my shoulder. My fingers are very crossed.

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