April 2016 - my mum was diagnosed with stage 3 bowel cancer. Had surgery to remove tumour from bowel and some lymph nodes. Then met with an oncologist and had 7 cycles of chemotherapy
2017 - all bloods and scans were clear
Feb 2018 - her bloods indicated her cancer markers had increased. She and my Dad went overseas and upon their return in July 2018 she had a follow up blood test that showed they were up again. She had a scan which confirmed there was a tumour in her stomach wall so this was operated on and then she was referred to a radiation oncologist for radiation.
April 2019 - a tumour on her rib was discovered. This was deemed inoperable and she was again referred to the radiation oncologist for radiation.
October 2019 - inoperable tumour on her windpipe was discovered and her new oncologist (she had not had an oncologist since 2016 when her first one retired part way through her treatment) requested testing of the tumour and this is when BRAF mutation was found.
December 2019 - mum was put on a new chemo (her 2nd chemo)
January 2020 - mum had her 2nd cycle of chemo and then became extremely ill with severe pneumonia and spent three weeks in hospital. During this time her treatment was paused and she was very ill.
February - April 2020 - she was extremely breathless and her oxygen levels were constantly in the 80's. The chemo pump that she had initially started in December and stopped after being ill with pneumonia seemed to be deemed an option that failed HOW???? she got sick and was taken off it, there was no progression whilst on it. The breathlessness turned out to be a tablet non cancer related that was attacking her red blood cells, it is so rare her oncologist had never seen a live case which is why it took so many months to diagnose.
May 2020 - after months off treatment, and only starting an oral chemo in April 2020 she was advised that the cancer had spread to her brain. She had whole brain radiation and the attitude from the GP and oncologist in the clinic was like "we're sorry this is it" yes on paper brain metastases aren't great, it isn't the time to not try for your patient either
June 2020 - I found a trial drug/targeted therapy for the BRAF mutation and her oncologist advised she would put my mum on this. A few days after being on it, she contracted pneumonia again and spent 3 weeks in hospital so the trial drug was stopped/started from June - December 2020 for all these peripheral issues that were popping up
December 2020 - mum had a blood test, cancer markers were up and my mum was told a week out from Christmas that the drug was no longer working, its time to let nature take its course and that if she could cancel the order of the trial drug she had she should do that. This clearly affected her Christmas she sat there and everything we did she would think this was the last time she would see people etc
January 2021 - mum had a PET scan and her oncologist told her she shouldn't have been here at Christmas, and her result is good so she can actually go back on the trial drug
June 2021 - she had a fall and a PET scan showed a tumour on her hip. Her oncologist then said the drugs needed to be given back as they weren't working and needed to be available for other patients who needed them and then did some radiation and told her there really isn't any options and put her on an oral chemo and said when this fails or you feel to sick on it throw it out and then its nature taking its course
Now, I'm not saying her oncologist is not a good Dr or doesn't know her stuff, but I feel that she hasn't been with my mum from the initial diagnosis she came in 3 years after her diagnosis. How if my mum had chemo in 2016 and chemo in 2019 that was stopped because of pneumonia has she exhausted all options of treatment? Why is there a patient who has BRAF gene and bowel cancer like my mum, had it metastasize to the brain whilst on the trial drug, but she is allowed to continue on the trial drug as it is keeping other cancer in her body stable - why isn't this the option for my mum? They clearly got their assumption wrong in December 2020 as she was put back on the trial drug for 6 months.
The hardest part is trying to get my parents (my dad goes to the appointments) to understand that they need to ask questions, my mum just takes what her oncologist says as gospel and won't ask, challenge or question anything. It is really hard to hear my mum keep saying "well nature will take its course soon, that's what Louise said" How do I try and get them to see that asking a question isn't meaning their Dr is bad, it is simply a matter of asking a question as it is about advocating for your health and your life
