Hello. I went to GP in August about swollen Lymphnodes in my neck. She sent me straight away to get Ct scan of my neck, abdomen and pelvis. Found swollen lymphnodes in neck and abdomen. Arranged a Haemotologist appointment for few days later, 6th September, as thought it was Lymphoma. He sent me for ultrasound biopsy on the the neck, not fine needle, core biopsy…. He needed tthat to diagnose stage/type. Waited for the next week, for results, which was a phone appointment… I thought must be negative for everything, otherwise he would speak face to face… Alas, he was very apologetic, as he didn’t realise it was a phone appointment, assumed I was attending office until reception told him it was by phone…. They found it wasn’t Lymphoma, but adenocarcinoma cells sitting in there…. An appointment was made for an Oncologist next day….. He advised me it was not looking good. Non curable cancer. Severe Cancer…Chemo will be involved… Because it is in left neck lymphnodes, it must be stemming from- Breast; Stomach; Bowel; Pancreas; Liver….?…. I have no discomfort. No weight loss. No unexplained fever. Just swollen nodes and night sweats. He sent me for more specific blood tests and a Colonoscopy/Gastroscopy… I have a phone consultation with him tomorrow…. Wondering if he will tell me it’s all a mistake or something more concrete to go on… I am writing this because I don’t know what to feel, to expect… I am sure you have all been in this boat…. Fingers crossed….
Hello Linda, sorry to hear about your diagnosis. The one thing that surprises me is that you mentioned it being a non-curable cancer. I tend to think that most cancers are curable, some more than others. For an oncologist to have made a 'terminal' diagnosis at this early stage, seems strange. I did a bit of research on the net, and nowhere does it say that adenocarcinoma is not curable.
For my part, I have inoperable advanced pancreatic cancer and have been going through chemo for six weeks now. But still, no one has told me that it is incurable.
My advice - seek a second opinion and explore treatment options. One thing you do need to do is have a confident and positive attitude that you're going to beat this.
Good luck. I'm sure you'll be fine 🙂
Sorry to hear about your health.
I'm no cancer expert. But something sounds wrong.
Did they use contact ( I'm sure I spelled that wrong) during the CT. Did they hook up a IV during the CT.
The CT should have found any growth and it's location.
I'm waiting on a biopsy report. They removed 2 lumps under my armpit and doing the biopsy.
A core biopsy is better than nothing but I'm surprised that they could say it's non curable without more testing.
I would get a second opinion for sure.
Stay positive and please keep us updated
Thanks for your reply.👍 Yes I found/finding it hard to comprehend the ‘non curable ‘part too! Especially with no symptoms….. Appointment with Oncologist today, so will get him to clarify it for me.
I am going to remain positive.
Just as you are. And wishing you all the best.
Dr called today. All blood tests came back very good. Nothing unusual in colonoscopy/gasroscopy. Sending me for a PET scan. Booked in for Monday. If nothing ‘lights up’ on PET, like the lesion on my lung, which doesn’t look very significant, then enrolling me in a clinical trial… Will TRY to enrol me. Due to COVID some may close .
Linda glad to hear that you are getting a PET
I understand that they are the Holly Grail of tests..
Can I ask why you would choose to use a new non proven treatment over something that been around for a while and proven to work.
I hope you are feeling well
Hello.Thanks for you reply. Yes, am looking forward to the PET Scan. I am hoping it lights up something that we can work on. The reason I would be involved in the clinical trial is if we can’t find where it is originally from, my chemo therapy would be based on where they think it is from. In this trial, they are trying new tests to find where it could be lurking and a new more targeted therapy may be useful. It is specific to Cancer of Unknown Primary. At Peter Mac…Also, if the research helps someone else, then it worth it. I don’t believe it will be a stupid move, as they wouldn’t be trialling on humans what didn’t work in a Lab, if that sounds right (?)🤔😅. And it’s a plan. Not like right this minute, when I know it’s there, but don’t know which part of my body to be annoyed with!!!😅
But I have to wait for PET……. This might all be by the wayside on Monday.👍💖
Thanks for the quick reply.
I'm still waiting to find out what kind of cancer I have or if I will even need treatment.
My CT scan showed no secondary growth.
I'm differently leaning toward doing a clinical trial if one is available and I need treatment.
I don't mind being a lab rat if it helps the next generation 😃.
I feel I'm going to be completely ok but I do feel quilty. We just lost a young lady from church who didn't even have a chance to get married.
I have lived a good life and have 4 amazing grandchildren.
No matter how this goes for me I'm never going to complain because there are so many people who hasn't had the chance to live as long as I have. I'm only 55 and would love to see our grandchildren grow up.
I really hope Wednesday you get great news.
I'm not sure what your plans are but I'm going to stay involved with this group even if I find out I'm cancer free and don't need treatment.
Unfortunately there are only a few people here who takes time to reply to people questions or comments. I'm no expert.
Sometimes all I can offer is a few kind and encouraging words. Sometimes that's all I need to get past a moment .
Good on your Positive Attitude. They say they is part of winning the battle!! I am turning 61 and as my Beautiful Daughters are yet to have children…. I really want to be around for that!! And 2 Big Weddings!!
so hopefully I will have a couple of outcomes soon…. This has been going since august, and as we were in lockdown, there wasn’t much to do… Now we are opening up and can do things again, I am hoping that the trial will offer more hope, if they don’t find a Primary on Monday.
Thanks for talking about all this with me. I don’t feel very alone…. My Husband and Family are supportive, but because I am in the dark too, they don’t really want to talk about it. My Darling Husband is also in support of the trial, as it is what he would opt for. I’m not telling anyone else in the Family, as they might not think it is a great idea. I can’t be bothered arguing!!🤯😅💃🏻💃🏻💃🏻💃🏻
Be part of this supportive community