Hi everyone,
A quick question from me- My dad has Oesophageal cancer - diagnosed 4 months ago and told he has months. He has done 4 rounds of chemo and 2 rounds of immunotheraphy. He has not had any severe symptoms and seems very strong/ has not noticably got any worse since diagnosis so we were hoping for the best despite the initial diagnosis.
The scan he had last week shows no change in the cancer growth- some areas seem a tiny bit smaller and some areas in the lympth nodes are slightly bigger but only around 2mm total.
Does anyone have any knowledge in terms of if treatment hasn't shrunk it at all after 4 rounds - does this mean it likely never will or has it sometimes taken more time than that but has then started to shrink?
Thank you!
Hi Beth111
My husband when diagnosed was advised that he had 4 months without treatment, and if lucky 1 year with, the initial specialist advised him to go home and put his house in order, and that is what we started doing.. our focus was so on the possible negative outcome that for a short time we stopped living the best life each and every day..... The main Oncologist told him that they would do everything they could to make him comfortable, but he was now a terminal patient on palliative care... that word, Palliative was very scary, possibly because we saw it as being the treatment given over the final months of life... in our case this has not been what Palliative care has been, it has been three and a half years of initially learning to understand how to live with Dal's condition and then living the very best life we can... he is now heading in to his 88th treatment, he has moved from FLOT on to Immuno/targeted therapy and it is definitely giving him longer life expectancy than we were originally advised..
His throat tumour is stable, it will never get smaller, his liver and lungs have reacted really well with limited mets found now.
I am telling you all this because it is important that you and your Dad focus on the positives of what the treatment can give, rather than the negatives of a prognosis that may not be correct. As long as the tumour does not get any bigger, the treatment is working and that is what is important right now ..
I wish you Dad every success with this
Lowe'
Hi Beth111
I think the best advice I can give you is this
1. Both you and your Dad are important, ensure that whatever decisions you make are not through fear of what might happen next, remember, none of us are promised tomorrow, even if we are fit and healthy, our time will come and although we know this, we do not generally live in fear of it.
2. Making a bucket list shouldn't only be for people with a terminal illness, although it is often the case that this is when they are thought of, so make a list with your Dad anyway, of things that you would like to make time to complete together, as well as things you would just like to do, with, or without each other. (you can honour him further by carrying that on for many many years to come)
3. Live your best lives, make plans, book holidays, give an extra day a month to your Dad which you would not necessarily of done had he not become ill. Because sometimes life becomes too busy, and overtakes us and days roll into months.
Live.... Live and Live... because life is too short, no matter how long we have left. Show those important to you how important they are by sharing time with them whenever you can, but also give yourself time for you..
Dal and I have just come back from holiday, as scary an experience it was to go on an adventure that took over 10 hours flight time to get to, not knowing how he would react to the food, to the environment, we cleared it with his oncologist, she believed he is well enough in himself and we bit the bullet. Fear can take so much positive out of our life, look to the future, and give your Dad what time you can, whilst you also live your life as he and you know you are entitled to.
I rambled on a bit, sorry, but I hope this helps.
Lowe'
Hi Dean
I only got back home yesterday, and I have read a few of your posts today, and it is great the way you have taken your experience and fed it back to others who are newly experiencing their own diagnosis.. Your posts are positive and comforting, thank you for reaching out to others here.
Apprehension is what keeps us on our toes, keeping as positive as you can and sharing your thoughts and feelings with your loved ones, so they know where your head is, are really important, sometimes people may choose to lock down within themselves, and although that may work for them, it is really tough for people on the outside, everyone in your family is in this with you..
I hope that your treatment has been successful, that the op is given if needed and that after a period of recovery, you manage to find your new self and make peace with who that is, if you can do that, you will live your best life..
Best of Luck to you also Dean
Lowe'
