Vita Blog: Starting treatment for secondary cancer in the brain

Posted: April 17, 2015 in Round Three, Vita Blog

This is my latest blog post for Breast Cancer Care:

http://www.breastcancercare.org.uk/news/blog/starting-treatment-secondary-breast-cancer-brain

There aren’t many areas of my life not affected by cancer. Recently it invaded a whole new territory.

At the start of February, I was diagnosed with brain metastases – meaning cancer cells have spread to the brain. My most recent CT scan showed that the cancer has also progressed in my liver and lungs. In short, the drug I’ve been on since November hasn’t worked.

Disease progression of any kind is bad news. However, brain metastases, or mets, are the biggie that everyone with secondary cancer dreads.

The brain isn’t routinely scanned, because if cancer cells have spread to the brain this usually causes symptoms. I had no major symptoms. I’d had the odd headache, but who doesn’t? It was more paranoia that made me request an MRI scan. Unlike CT body scans, the results from a brain scan are often given on the same day. Instead of the dreaded weeklong wait for results, ‘scanxiety’ is confined to the 10 minutes after the scan.

I was cheerfully optimistic about the results. But when the radiotherapist delivered me a (never offered before) post-scan cup of tea, along with an ominous dose of ‘side head’, I knew it wasn’t good news.

Starting radiotherapy

The last month has been a whirlwind of appointments, planning and finally treatment.

Sometimes secondary breast cancer in the brain can be treated with surgery, but it’s most commonly treated with radiotherapy.

I was offered a type called stereotactic radiotherapy.

Stereotactic radiotherapy (also called Gamma Knife) is very precise and delivers high-dose radiation to the tumour, causing less damage to surrounding tissue. Each area is usually only treated once.

The first stage of treatment is planning. During this appointment, a plastic mould is made of the head and further scans are carried out to confirm the areas to be treated. Having my head set in molten plastic is one of the strangest experiences I’ve ever had. The mask is clamped to the bed to restrict movement even further. Not being able to talk or move for 30 minutes is incredibly difficult and I was dismayed to discover I’d have to wear the mask for even longer during treatment.

I had my denial head on (‘What cancer?’) for my first lot of treatment. My ‘just pretend none of this is happening’ strategy works quite well most of the time, but it proved ineffective when my head was screwed to a table for two hours. Cue panic attack.

Stereotactic radiotherapy is incredibly precise, so it’s critical that everything is correctly positioned. I must have been gurning when they made the mask, because my chin proved to be a problem and it took a long time to get everything correctly positioned.

Once everything was correctly aligned, including problem chin, treatment began. I’m not going to lie: this was not a fun day out, although I don’t make things easy for myself. Worried that my breathing was causing too much movement, I tried to restrict and hold my breath. Add to this a pint of green vegetable juice and nausea and you’ve got a toxic cocktail. It was like being tied to the plank of a very wobbly ship with a colander attached to my head.

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I had the mask on for a full two hours which was really difficult. I was reassured that it can be removed at any time, but removing the mask can prolong treatment because everything has to be realigned. Given the options I decided to plough through without a break.

Two days later I went through it all over again, but this time I was prepared. For my second appointment I asked for sedatives and was also offered stress-relieving squeeze balls. Both of these really helped relieve my anxiety. It’s a long time to be confined in such an uncomfortable position, so I would recommend anyone having this treatment to consider using some relaxation techniques and to request sedatives if necessary. And don’t try to hold your breath like I did.

You can bring your own music although I don’t necessarily think this is a good idea. Anyone who’s had an MRI scan will appreciate what I’m talking about. Stereotactic radiotherapy isn’t as noisy as an MRI, but having your head clamped in a vice for two hours is a sure fire way to ruin your favourite album. I didn’t bring any of my own music and was subjected to 80s classics. Club Tropicana will never sound the same again.

As traumatic as it was, I’m really glad I had the treatment. Stereotactic radiotherapy is a relatively new treatment and it’s not offered in many places, so I feel really fortunate to have been able to access it. I’ll find out in a couple of months if the treatment has worked and I’ll now be having three monthly MRI scans to monitor my brain.

Access to drugs

This week I also started a new treatment, a targeted drug called everolimus.

Everolimus was a drug earmarked for removal from the Cancer Drugs Fund in January. Both everolimus and another breast cancer drug eribulin have recently been reinstated by the Cancer Drugs Fund, which is great news for women with secondary breast cancer in England. However, access to cancer drugs is still not consistent across the UK.

Another breast cancer drug lapatanib has been rejected for use by both the Cancer Drugs Fund and the Scottish Medical Consortium, making it unavailable to new patients across the UK.

And while some breast cancer drugs are available in England through the Cancer Drugs Fund, only everolimus is approved for use in Scotland. Access in Wales and Northern Ireland is even more complicated.

It’s a shameful state of affairs. We hear news reports that these drugs give patients only an extra six months, as if we’re not worth the effort. But some of these drugs can and do work for years. Many of my friends with secondary breast cancer are a testament to this.

These drugs don’t just keep us alive, they allow us to live and they should be available to all, not just those fortunate enough to live in the right postcode.

With the upcoming election you can email your local MP and encourage them to put breast cancer on the agenda #stopwomendying.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

 

 

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Comments
  1. linds says:

    Really well written Kath. That looks awful, I swear I couldn’t lie still for two hours like that, can just about do the usual 45 mins!

    Hope it all works and you find out about that soon xxx

  2. Anonymous says:

    Hi Kath, thank you for your latest blog. Again you made me cry and laugh in the same post…..love the wry humour of ‘having your head clamped in a vice for two hours is a sure fire way to ruin your favourite album’. I really hope these drugs allow you to live. Love Nat x

  3. Anonymous says:

    Hi Kath. So sorry to hear you have not been too good. I hope the new treatment will bring better news for you. I start Eriblian next week for 12 weeks and then a scan. Looking forward to seeing you soon. Love Mary xx

  4. I too was crying and laughing at this blog post. I am talking about you to all my friends here in Vancouver about how wonderful you are and how
    I hope you can visit, and what an extremely informative blog and writing style you have. We are all rooting for you here and sending positive thoughts and healing vibes. Dearest Kath, what a journey you have been on and continue to take. We are with you all the way, no matter how near or far we are. I look forward to reading about your progress and latest news. Love you xxx

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