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I was diagnosed with oesophogeal cancer in Nov 2024. Due to my medical history I was considered too high risk for surgery and was offered just palliative care.

I couldn't accept that and pushed for curative treatment which my oncologist reluctantly agreed too saying he didn't think I could handle it. I had 5 weeks of chemo and 25 sessions of radiothetapy which I handled really well.

My oncologist left so I then had a new oncologist who ordered a ct scan in July and when I saw him in August he said the tumour had gone and there was no spread, just a little remaining in the lining. I was told I now had years ahead of me.

I was then booked in for an endoscopy for biopsies and a follow up ct scan in Oct. I then saw the oncologist at the end of Oct and was told the tumour had started growing again and had spread to lymph nodes either side.

I was again told I was too high risk for treatment and only have  about 6 months to live. I asked about further chemo so he went through the risks. The chemo could kill me or cause a brain haemorrhage, or heart attack, both of which I have suffered in the past. I am also high risk for sepsis. The chemo would be for 6 months would make me ill and only add another 3 months.

I took a week so I could think it over, and decided it is too high risk, and I didn't want to be ill before it became necessary. I am currently feeling quite well and can eat, although I do suffer from lack of appetite. Family and friends are very supportive of my decision.

Sharon

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  • Hi Sharon

    Welcome to the group! Just want to add my experience. I have bowel cancer, they do test using my biopsy tissue to see what treatment is suitable for me. It excluded certain targeted drug as I have a mutation. Blood tests can also be used if the biopsy sample is a couple of years old. Because the cancer could have mutated then blood tests can be done to update the result. 

    My guess is your biopsy was analysed if is done fairly recently.

    However bowel cancer patient does not have PDL 1 test as Patrick has linked for you. I don’t whether you need to ask the nurse especially about this? 

    Stella x

  • Hi Sharon, sorry for the late reply my friend, I've been catching up with your posts, and was sorry Immuno & targeted therapy haven't been offered, though there seems to be a little blurring of the lines, sometimes certain treatments aren't offered if there not available at your hospital, so ask your team if thisis why, and ask them why you were turned down, don't settle for anything other than a full explanation, and it was a medical oncologist who advised against chemotherapy?, and have you talked about trials yet, CRUK and the Royal Marsden, webpages have lots of information, maybe worth a look my friend. It seems we have something else in common, as well as aggressive cancers, we're both heading towards being tube fed, though mine is due to dysphagia, brought on by treatment. Well Sharon, I've had meetings with an oncologist, where they talk to you for about a minute and everything else is up to you, fortunately I have many years in cancer and Palliative care so know what questions to ask, so I'm always a little put off when they can't answer, PS I've seen six different oncologists, and will be going from 8 week appointments to 4 week ones soon.

    Eddie xx 

  • Hi Stella thank you for the welcome, I had biopsies done when initially diagnosed as well as the recent ones. I also have regular blood tests. They did explain these treatments are not suitable for some cancers.

    Sharon x

  • Hi Eddie, I have met other cancer patients at the hospital having immunotherapy etc so my hospital must offer them. My current oncologist specialises in both chemo and surgical and he has been great to be honest. I find him much more informative and approachable than the previous two. He always explains well and answers all my questions, he has actually had surgery for bowel cancer. I always take a list of questions on my phone so I dont forget to ask anything.

    I did ask more questions about palliative care, which he answered for me. I am the type who likes to know what is ahead and when and who to contact when things get worse.

    Do you have someone with you when you go to appointments. My son comes with me and I find it helps.

    Sharon x

  • Hi Sharon, that's great to know your being thorough my friend, and asking about palliative care as well, which you don't have to wait for things to get "worse" before accessing, I've been with my hospice and their palliative care team for nearly 2 years now, along with the district nurses, and they've made such a difference to being able to live a normal a life as possible my friend, though I'm 99% certain of how my end will be, so I have my ReSPECT, DNR, and POA forms in place for it. I prefer to have my meetings alone, as I don't need everything explaining in detail to understand, and the 2 times I  took my partner with me, not only was half the appointment taken up explaining everything to her, it was very upsetting for her as well, which in turn upset me. Anyway I'm at my hospice today for counselling, therapy and to meet friends.

    I hope you have something nice in place for today.

    Eddie xx 

  • Hi Eddie, I don't feel the need for palliative quite yet. I am lucky enough to have no pain, and  I am really well generally, just lack of appetite and some fatigue. My cancer nurses have said if anything changes they will sort that immediately which is reassuring. I have just started my application for POA, and DNR has been on my mind so that is next.

    I hope things went well for you today. I am having a quiet day today before meeting up with a friend tomorrow.

    Sharon x

  • Hi Sharon, let's hope then that palliative care isn't needed for you for some time my friend, and like you I can't believe how well I'm feeling, though there's an obvious decline with motivation and fatigue top of the list, but by no means the most serious, I'm sorry you have fatigue too and a poor appetite, due to dysphagia, I mostly follow a little and often diet, and you'll find many of us on here have our DNR, POA, and ReSPECT forms in place, as it takes away a lot of worries regarding the end, and thank you, I always enjoy my time at the hospice, and lunch with my friends, as I hope you will with your friend tomorrow.

    Eddie xx