Terminal ☹︎

Hi.

Thanks for taking the time to read my post.

My Mum was diagnosed with small bowel cancer last year (miraculously picked up by a capsule endoscopy). She was operated on in Oct18 where they removed a large tumour that was causing the blockage). She has since completed 6 months of chemotherapy.

 

A couple of weeks ago she had a follow up CT scan where in the abdomen they picked up a 36mm diameter left upper para-aortic lymph node mass just below the left renal vein. The liver, spleen, stomach, pancreas, adrenals and kidneys are unremarkable. She was advised that her cancer is now Stage 4 and terminal and that apparently cases similar to this typically have a life expectancy of 12-18 months.

Obviously, this hit us all like a freight train as we all thought she was looking much better and is not in any discomfort at all.

The next recemmonded steps are to meet with the surgeon (although we we're advised it's highly unlikely they'll be able to operate), a CEA test, and another CT scan in 4-6 weeks - with FOLFIRI chemo as an option as well.

Does anyone else know of a friend / loved one that has been diagnosed in line with the above? Any thoughts / tips / comments / suggestions would be greatly appreciated.

Trying to survey all options such as Immuno therapy and clinical trials as well.

  • Hiya, I am so sorry to hear about your mum. My mum was diagnosed with stage 4 cancer originally thought to be lung cancer as she has a tumor wrapped around her ausophogus however after biopsy turned out to be breast cancer that had spread. She was given 18 to 24 months in Feb 2018. In November 2018 they found a brain tumor after she had chemo in summer 2018. They told her she had less than a year left. She is taking I brants I think now. She has lost a lot of weight and after two stents to help her eat she still struggles to eat much at all. 

    However, she had a lovely few holidays in this time with various family members, even got pneumonia and travelled to Paris, Brussels and Prague! We went camping in July and she went to a music festival in August. She is in a lot of pain and has to take a few different pain meds, at first she didn't want the oramorph as felt like a druggie!

    She is slowly getting worse but she tries to plan outings and holidays to have something to aim for. She sleeps alot more and there have been a few times I thought we were in the last days and then she got a bit better again. 

    It's so hard not knowing what's going to happen, but I hope your mum stays strong and I wish you all the best xxxx

  • So sorry to read about your Mum.

    I’m surprised they used the word terminal as this is a word most professionals tend to avoid as it doesn’t have a formal definition and can give the impression that the situation is hopeless. In 2013 I was told I had a stage 4 incurable and inoperable cancer with typical survival of between 2 and 18 months - IF the chemo worked.

    All I can advise is to take the life expectancy figures with a pinch of salt - these are average figures which only work with large cohorts of patients, not individuals. None of us are average and research shows that these figures are wrong more often than they are right. Some of us get lucky.

    Keep on doing what you’re doing, ask questions, push for alternatives and don’t give up hope too soon.

    Best wishes

    Dave

     

     

  • Thanks very much for the reply. I'm really sorry to learn of your Mum's condition but also really greatful for you sharing the precious memories you have been building together as a family despite her condition. It's so encouraging to hear and I wish your Mum and family all the best in the face of adversity xxx 

  • Hey Dave I'm so thankful for your message. I found it  and very encouraging and right on point. I shared this with my Mum as thought this is the exact type of thoughts she needs to be mediating on at the moment.

    I wish you all the best with your health!  Jeff