Hi. My 39 year old sister was just given the news that she has Stage IV Rectal Adenocarcinoma. They told her they will be treating her with palliative chemotherapy and the earliest they can get her in the appointment is 4 weeks from now. I asked the oncologist in the meeting if we could start chemo orally but she said it is not an option as we are still within the 12 week window of diagnosis to treatment. I also asked about checking for certain genetic markers (KRAS) to ensure that the Chemo will work but was told they don't check that until after the chemo proves not to work.
They will be treating her with FOLFIRI-bevacizumab every 2 weeks.
She has 2 mets to the liver and one to the lung. Apparently they are all candidates for surgery but was told surgery was not option.
This is where the complications come in. She also has a very rare genetic disease known as VHL. This causes benign tumours in her central nervous system and also causes cancerous tumours to grow in her kidneys which are monitored and removed by laser surgery or resection before they reach 3cm in size.
These 2 horrible diseases are independent of each other. The VHL is monitored and under control. Unfortunately the cancer clinic here is treating both diseases as whole and told her that surgery is not option.
She lives in Canada and even though we are allowed second opinions it appears to be frowned upon and not always easy. The wait lists are long to get into different specialists.
She is willing to travel and is willing to "sell the farm" if need be. Does anyone have any suggestions on how to get a second opinion?
Sorry for the questions! We are just a little lost and in shock right now.