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Surgery – sometimes called a resection – is when as much of the tumour as possible is removed. It doesn't come without big risks. Sometimes if the tumour is in a tricky place to reach, a biopsy will be offered instead. Stuart was originally operable but with the delay between detection, MDT meeting and surgery being scheduled, the tumour grew into the midline making it "inoperable". With hindsight we should have sought out a "second" opinion right when the tumour was detected. We didn't know at the time that a delay would change the outcome so drastically. You can read about second opinions here.
Radiotherapy – this is when radiation is used to kill cancer cells. In Stuart’s case it was used to relieve symptoms and was called “palliative radiotherapy”. We enquired at the time whether there was a more targeted radiotherapy option rather than whole brain but we were told no, not at our local hospital. Radiotherapy appeared to be working well for Stu. His speech and thinking ability came back. But despite this, two days after the six weeks of RT finished the symptoms of swelling began, which resulted in excruciating headaches and affected his quality of life. The balance between keeping steroid use to a minimum and managing symptoms was incredibly difficult. Stu didn't want to be on steroids for lots of reasons, one being it suppressed his immune system. Other patients that we were in contact with used Boswellia as a substitute and advised us to start that ASAP. Given the opportunity we would push for proton beam therapy because whole brain radiotherapy caused more damage and swelling than a more targeted approach would.
Chemotherapy - the standard of care chemotherapy used for GBM is Temozolomide. Stu did six weeks concurrent TMZ alongside radiotherapy, then took a four-week break before starting a higher dose “5 days on 28 days off” protocol. You can read about TMZ on the Brain Tumour Charity website here.
TMZ was approved for use in the UK in 2007, since then NICE haven't approved a new tactic. Sometimes it’s effective, sometimes it’s not. We had to pivot treatment to a different chemotherapy when TMZ became ineffective. This is when we realised that personalised cancer care and treatments chosen based on the molecular findings of the genetic testing would have potentially changed the outcome. This level of genetic testing is not offered as standard of care. You can read more about that here. We really hope that soon the NHS are able to offer personalised cancer care to everyone.
We should have explored re-purposed medications, second opinions and CeGat immediately. We felt really let down that the SOC chemotherapy in the UK only works on a small percentage of patients and that some doctors aren't willing to even discuss anything else. It shouldn't be a postcode lottery to determine whether your oncologist really is a brain cancer specialist and knows about the up to date research. Our hope is that personalised cancer care becomes the norm and that although the NHS and their staff are incredibly stretched, more research will provide better options and hope for patients.
What does that even mean?
The term “standard of care” refers to the reasonable degree of care a person should provide to another person, typically in a professional or medical setting. For example, standard of care in the case of a cancer patient could include a recommendation of chemotherapy or surgery.
In the UK, standard of care offered to brain tumour patients is surgery, radiotherapy and chemotherapy.
According to the NHS website Radiosurgery and Gliadel Wafers are also offered however they weren't offered to Stuart. You can read more about Gliadel wafers here.