Hi I’m Zoey from Cyprus and now I am 57 years old. Back 2019 I discovered a tumor on my neck, stupid endocrinologist said it was nothing and shouldn’t do anything. I insisted to remove it so I visited the surgeon and had thyroidectomy after 3 months. In all of us shocked as the biopsy came back with poorly differentiated thyroid carcinoma. Had the RAI one month later and headed to the United States. They did all necessary tests and I was found cleared from any cancer cells. Ever since I kept visiting my oncologist for blood test, CT Scan and Ultra sound every 6 months. Last April my thyroglobulin marker started to arise so I had an urgent CT Scan, MRI and ultra sound with no evidence of metastasis. Keep in mind that since 2019 there are some calcified nodules in my lungs that didn’t change. We arrange and went back to the States where I had all the necessary tests plus a PET Scan. The meeting with the doctor was a shock to me as he informed me that there is a metastasis in my lungs and in my bones and unfortunately it is incurable (this lives with me every single day). He said that I will start chemo when my symptoms begin as for the moment I am asymptomatic. My whole world collapsed. Coming back to my country we had a-video call with my doctor in the states and my oncologist in Cyprus who insists on taking the RAI again but the doctor in the States disagrees and he believes that it can do nothing in this kind of cancer. I will have a new PET Scan in 3 days and if the tumor in my bones has grown I will most probably begin radiotherapy. I am really very scared, terrified as I know that this is a rare form of cancer and I feel the need to speak with people who have had it or are at the same situation with me. I will appreciate any kind of help and advice.
Hi ZoeyX and a very warm welcome to the Community but sorry to hear about the challenges you are having.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).
It’s important to understand that this Community is mainly United Kingdom base as Macmillan Cancer Support is a UK Charity and our health system may well be significantly different from what you are working with.
The New to Community is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in some of our support groups. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the links below
Living with incurable cancer - incurable patients only (Please join the group but for everyones safety this will then have to be approved by the Macmillan Community Team so will not happen immediately)
…… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
Do get back to me if you need further help navigating the community.
