Rare Cancer? You’re on your own kid!

This blog is about how people with rare cancers seem to be left on their own by the NHS and leading cancer charities it is based on my personal experience.

As I said in my earlier blog – I have prostate cancer. Unfortunately for me its a rare and rather nasty kind – Ductal Adenocarcinoma. The little table below (via CHATGPT) illustrates this.

After radiotherapy what next?

I have now completed a set of 20 days Radiotherapy and frankly, have no idea whether or not this has made any impact on the cancer.

The Cancer Hospital who are caring for me have no staff who have treated someone with this form of cancer. They have told me that I will be monitored – quite how I am not sure. They have offered a baseline MRI and continued monitoring of my PSA. DAC has only got a fairly weak link to abnormal PSA. I remain on a testosterone blocker.

So, I thought I would get a second opinion!

My first step was to go to Prostate Cancer UK. They provide a telephone advice service staffed by specialist nurses. I had two questions:

First, what does good look like with regard to monitoring Ductal Adenoma post treatment.

The answer was – there is no evidence base with regard to DAC so we cannot give any advice re good practice. 

Second, can they advise me of any hospitals in the UK who have expertise in this field.

The answer was – it is not our policy to recommend particular hospitals.

I am an assertive middle class, white, former academic. I worry that other patients who lack my confidence (arrogance!?) connections and experience will not be heard and worse may even just ‘disappear’. This issue is increasingly recognised nationally.

I suspect my experience is similar to those experienced by people with other rare cancers.

What PCUK should do.

• First, a twin track approach. For most people with Prostate Cancer an evidence based approach makes sense. For people with rare cancers PCUK needs to establish an experience based approach. This means meeting with relevant oncologists and pulling together experience based best practice and sharing this.
• Second, making sure that individuals with rare cancers are connected to key charities and to the NHS so that they are not lost and where appropriate are signposted to specialist oncologists who may be able to help.

Why does this happen?

Clearly the vast majority of prostate cancer cases have a certain uniformity, and therefore the evidence base is clearer. I also suspect that NHS hospitals are driven by performance targets that are driven by the majority – rare cancers have no effect on hitting the target or not!

A hopeful future?

While I continue to try to work out what to do; the Governments new Cancer Plan has been published (4th Feb 2026) this has a whole chapter focussing on rare cancers and identifies a range of actions that are consistent with what I am saying and go further. This will clearly take time to see through … a commodity that people in my situation have not got! 

I think that it is very important that clinicians and stakeholder charities such as Prostate UK and Macmillan start to work with the spirit of this ambition. 

As for me, my GP and I will probably use what knowledge we can scrape together (CHATGPT again!) and see if we can identify and then get a second opinion from a hospital in the UK which has some expertise in this field.

As for people who are not confident, lack IT skills, have little experience of influencing systems – I have no idea what will happen to them in the interim.

WHAT DO YOU THINK?