Hello,
Myself and my family are going through a very difficult time, we're very confused and bouncing between acceptance and denial of my had having a terminal cancer diagnosis. I think not being told what to expect and if we are looking at weeks or months is adding to this.
My dad was diagnosed with stage 3b Lung cancer April 2023, which had also spread to the lymph nodes in his chest. They couldn't operate and we were told it was incurable. They did say that if dad responds well to treatment he could have years and he had to learn to live with cancer, which we did.
Dad has 4 rounds of Chemo, and he did great on it, his cancer stabilised and he even put weight on! His Chemo finished last August and he carried on with Immunotherapy every 6 weeks. In October he started coughing up large blood clots and we had to take him to A&E. They x-rayed and saw that his lung had collapsed and that there was a shadow down the bottom of his left lung. The cancer had only been in the top right lung and middle of chest. They told us that this could mean an infection or that the cancer has spread, and they would book him in for a CT scan. However his oncologist contacted us a few days later, said that he had canceled the CT scan as he was certain it was just an infection. In November and December dad lost his appetite and was barely eating or drinking. He had a routine CT scan Dec 18th, and Dec 22nd we were told that the cancer has spread significantly and that the immunotherapy would be stopped. He gave dad steroids and said if dad could put weight on by January, he would consider Chemo. Dad is able to eat / drink on the steroids but he's still experiencing significant weight loss. In the last two weeks alone, he's lost a stone.
In January, dad's oncologist said he didn't think dad was strong enough for Chemo, even though no vitals were checked or tests done. He said dad could have chemo but he risked shortening his life. My dad chose no treatment because he was told that treatment would not prolong his life, only risk shortening it.
We asked for a rough prognosis so we could try and understand where dad is in his journey but he refused to give us one. He also didn't tell us where the cancer has spread and why this meant dad couldn't have chemo.
I hear of people having chemo with stage 4 lung cancer which has metastatised, and still having treatment to prolong. I hear of people having round prognosis so they can prepare themselves. We feel completely left in the dark and are going through the process of a second opinion so we can understand what's happened and is happening.
It's awful to not know if he is nearing end of life stage or if he has months left. His oxygen levels average 96, which we are told are very good. How quickly can oxygen levels change with advance cancer? His blood pressure has lowered over the past month to average 107/70, sometimes dropping to as low as 90/55. His heart rate averages 75bpm. Like I said he is losing considerable weight, and we're not sure if this is cachexia?
His energy levels are low but he's still mobile around the house, and he gets breathless very easy. His voice is hoarse, but he's still eating and drinking.
I'm not sure what answers I am looking for, half the time I'm convince he isn't dying from cancer, and has loads of time let. Other times I feel like it's a matter of weeks.
