Confused . Com

Hi back in November 2023 I was diagnosed with neuroendocrine cancer of the duodenum. After a few scans I was told that it had already spread to my spleen, a lymph node, my spine has 3 lesions and my liver has a cluster.

That's the cancer , now about me. I'm  a 73 year old male. I already suffer from COPD. and Heart disease consequently I'm not very active and have trouble breathing. To add to this I have an untreatable tremor + arthritis in wrists and hands , so as besides not very active I can't do much through lack of dexterity. 

After talking to the oncologist we came to the agreement that palliative care was the way forward. We decided that monthly injections of lanreotide to slow down the cancer. Because of my other issues excepting this was a no brainer. Off I went waiting for a date to start. The oncologist then said as this was a rare cancer he just to make sure was going to seek a second opinion , which I thought was a sensible move. 

He approached the a hospital who are the known top guys when it comes to neuroendocrine cancer. Nearly 4 months later they come back with the idea of more scans, perhaps a course in chemo plus a trip to London ( I live in Cornwall ) 

I know my cancer is incurable I've excepted that. I have so many issues it was easy to take. I've excepted the fact that I was to settle down with the lanreotide+ any other palliative care as and when it became necessary. Now they have thrown a spanner in the works. To be honest I don't want to drag myself 250 miles to be told I should have chemo that I don't really want. At the moment although so many issues I'm comfortable. Throw a course of chemo and the disruption that causes into the equation then I think it will be robbing me of time that I actually feel reasonably well 

So what do I do my head is spinning . Would I be right in saying thanks but no thanks can I have the injections please 

          Frank 

  • Hello Frank, and thank you for posting.

    I can understand that you feel awkward about this situation, but you are the only person who can make this decision.

    It is not unusual for people to choose quality of life over the possible chance of quantity.

    Many people, particularly when they have other health conditions, don't want to spend the time they have left in hospitals. The travelling back and forwards, having blood tests and scans and possibly getting treatment side effects, all feels too much.  Do not feel by saying no to this second opinion that you are doing anything wrong. You are simply making an informed choice that is the right decision for you in your situation.

    Take care Frank, and if you want to talk things through with any of the nurses on the helpline the number to call is Freephone 0808 800 4040. The lines are open from 9 am till 5 pm, Monday to Friday.

    Sarah.

  • Is there any way you can have a telephone consultation with the consultant about your concerns rather than drag yourself all the way to London? Worth a try.

  • Thank you for your reply Sharza.. I've been told by my local oncologist in Plymouth, that the London hospital intends a video chat before anything moves forward.which is a blessing 

  • Excellent - certainly if you can avoid the long trip to London so much the better.

    Nothing ventured...... and wishing you all the best x

  • Update... I had the video chat with the guy from the Hospital.. he has written a a report to my oncologist locally suggesting urgent start of chemotherapy. This of course was without his seeing me in person to *** my total health condition. . My oncologist and I have made the decision that because of my heart and lung conditions the Chemo recommended would be too much for me. I start lanreotide injections in 2 weeks . And we go from there .. Frank xx

  • Hello Frank.

    Good to hear you. And appreciate the update.

    Well, it seems that you're going with your original plan, after all.

    At least you've had a video call (saved a trip all the way to London) and an alternative opinion to consider before deciding, with your oncologist, the best thing to do for you. 

    I hope you continue to have a good quality of life and wish you well.

    Best wishes,  Sharza

  • Many thanks Sharza. Your interaction has been much appreciated 

    Best wishes to yourself too .,. Frank