"Cancer Treatment"

My spouse is receiving treatment for brain tumours grade 3 (Oligodendrogliomas) at Sir Charles Gairdner Hospital (SCGH). Their most recent MRI was last week and was followed by an Oncology appointment the next day to discuss the findings. As the MRI report hadn't been released yet, the oncologist discussed their findings based on a visual look at the MRI scan. As I work full time and we have 3 children in primary school, I was unable to attend the appointment with my spouse and stayed back in my home town (8 hrs drive from Perth). My spouse called me on the phone at the time of their consult so I could hear what was going on. The gist I got from the appointment was that my spouse had 5 new tumours in the area of the brain controlling their vision (it was indicated that they would most likely go blind at some point), and my spouse would need to start chemo straight away. As well as the new tumours, their existing tumour in another part of the brain had also grown. The oncologist said there was also a possibility my spouse would need surgery as well and was going to discuss this at the multidisciplinary team meeting on Thursday and get back to us on Friday with the outcome of that discussion. This was a lot to take in.

My spouse then called me later that day to say that the oncologist had called them back to say that they had good news as the surgeons think that the areas that look like new tumours are likely to be changes related to past treatment effects. Given this, they suggested waiting 2 months before having another MRI and deciding what treatment to undertake. Given my spouse has brain tumours and brain injury related to past surgeries, they are unable to remember or convey conversations well. So the feeling I had after this conversation with my spouse, was that the oncologist and the surgeons initially had a difference of opinion as to whether the 5 new area's lighting up on the MRI were new tumours or changes due to past treatment. At this point my confidence in the specialists started to decline.

I then discussed this with my cancer support nurse in my home town who immediately emailed the cancer support nurse at SCGH asking them to have a look at the findings and call me to explain what was going on. This was on a Thursday and I didn't hear from them until nearly 5pm Monday. This means we spent 4 days not knowing if the results were really good or really bad. My impression from talking to the nurse was that the specialists were using their experience and knowledge to say the growths were pseudo tumours related to treatment effects and not new tumours (though the nurse did say they can be wrong) and this is why they are happy to wait another 2 months before another MRI.

The overall problem I have is the inequity in services between regional and metro populations. Even though my concern is in relation to treatment at SCGH, I’m sure it is the same for regional people attending all of the metro hospitals. I don’t think the health system takes into consideration the distances we have to travel, time we have to take off work and costs for travel and accommodation. I also feel like, as well as these issues, we get a second rate service because to give us the ‘shortest’ possible time away from our home and give us the cheapest accommodation, they squash our appointments into 2 days – day 1 MRI, day 2 oncologist review. This doesn’t allow for how long it actually takes for the MRI report to be written and then for the MRI report to be validated by a senior specialist and then for the oncologist appointment to happen and all of the patients symptoms considered and then a multidisciplinary team meeting to take place and then any updates to be conveyed to the patient. All up this takes at least 5 days but we get squashed into 2 days and sometimes get home after two days and then are told to come straight back to Perth as the multidisciplinary team meeting has taken place and they way to operate straight away or start chemo straight away. The staff in metro hospitals don’t always look at our address or don’t always realise how tiring and expensive it is to travel 8+ hours to get home (especially if you have a cancer diagnosis). Or how tiring it can be to travel all the way to Perth for a 15 minute consultation only to turn around and go back home again. It’s a major upheaval to an already stressful life. I’m not sure I know the answer but more funding for air travel, more funding for accommodation and more time to stay in Perth as long as required would possibly help. I’m sure others would have some good ideas…