Diagnosis
The dreaded moment when you’re looking at an Oncologist and waiting to be given some news. I’d been to a routine annual Asthma clinic, referred to my General Practitioner (GP), referred to a specialist, had a bunch of tests, and now referred to an Oncologist. There were many hints along the way, but it did not reduce the out of body experience I was having that day. This happens to other people but not me.
I felt in control
Rewind 2 months to May 2010…… I was happily working, getting stuff done, making things work. I had sufficient autonomy and freedom of manoeuvre. I felt in control. I’m happy as a pig in the proverbial! My annual Asthma clinic comes along and it’s an opportunity to work at home for the day….yahoo – no commuting! “Hi Ronny” – “Hi Liz”. Blah Blah Blah. However, glad Liz was taking it seriously – I just wanted to get back to my laptop, things to do…… After the usual tests and checks, we commenced the AOB (any other business) – “I think I’m a bit lighter than I thought I was”….”Did you mean to lose the weight?”…..”no”. Just to be sure, Liz gave me a blood test form. Had I known at the time that this was probably the most important document I might have ever held in my hand, I would have driven straight down to Bournemouth Hospital and had the test done. However, that form sat in my in-tray for around three weeks…… I was too busy on my laptop, things to do…….. To cut a long story short, my blood results were not right, and the discrepancy needed further investigation.
I even went on holiday to Barbados not thinking anything was wrong. It was a fantastic holiday and I had been working really hard, I needed it. I had no idea that as I was relaxing on the beach sipping Piña coladas, I had a 3cm mass in my mesentery, long chains of lymph node metastases, multiple liver metastases, lymph nodes growing my left armpit, and scary fibrosis growing in my retroperitoneal cavity fusing my aorta (main arterial route of the body) and my inferior vena cava (IVC) (the largest vein of the body) – in reality, my body was slowly dying.
In hindsight, I’m glad I didn’t know. One thing led to another and on 26 July 2010, I met with an Oncologist. He dispensed the news that I had metastatic and incurable Cancer and without treatment, I would probably die because of it (…. I did ask!).
The 48 hours prior to that meeting were to add to the drama of the event and it’s a story I would not like to repeat – read about it here
At the end of that meeting, I no longer felt in control
But thank you Liz – I often think about what might have transpired without that blood test. Listen to me explain my diagnosis here: CLICK for the video.
Check out my entire diagnostic, therapy, and surveillance story here.
The two pictures below were taken in Barbados a month before I was diagnosed. Glad Chris and I didn’t know what was coming, we had a great time. My ‘hamster cheeks’ are no longer there! (…… fast forward to 2022, I’m sure they are returning!)
Back in control
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Thank you for your story. I was told by my Family Doc I have Carcinoid Syndrome. Oncologist on Feb 8. I am freaking out so bad. I am only 54.
Hi Shelli, do you have confirmed tumour locations ?
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Hi Ronny, fantastic blog! Thanks so much for sharing your story!
Recently diagnosed w stage 4 net. Grade 2 tumor on my left kidney. Lympnodes nearby enlarged and just had dotatoc scan that showed one .8cm lesion in liver and 1cm lesion on left hip. I have no pain currently but plan is to have surgery and remove tumor and kidney along w lymph nodes and spot on kidney. Hard to believe it’s happening. I’m 52
Sorry to hear of your diagnosis Scott? Can I ask if they are saying the primary tumour is the kidney? How do they know the tumour is grade 2? Are you seeing a NET Cancer specialist? Where are you located?
NETs are treatable once they know where they are and tend to be slow growing. Hopefully this will offer you fairly normal life aftet treatment – you will be under surveillance for the forseeable as they can be a bit sneaky
I had a biopsy at UCSF which determined it was a NET and that it was grade 2 because of the 8% on KI-67 report. I am seeing a specialist at ucsf but feel a little bit in between as she is in the GI group but my tumor is in my kidney which is extremely rare. I have no symptoms now which makes it so odd. I feel great. Thanks for the feedback
Liver Biopsy? Keep feeling great!
Biopsy of the enlarged lymph nodes around the kidney. They are convinced that the kidney tumor is the primary NET
OK that is rare! Good luck with your treatment. Keep in touch and hope you will continue to follow my blog? I also have a Facebook link to the blog and I post more stuff than on here: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723
You will need to ‘Like’ the page to see the posts.
Thanks again for contributing and let me know how things go?
I was in my 40’s and felt the same that I’m way too young and looked healthy on the outside. Even children can get NET’s it doesn’t discriminate it affects all ages sadly
[…] you want to read (and hear) more detail about my diagnosis, check out these blog posts: Diagnosis – I’m no longer in control and Did you mean to […]
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[…] Just lately I seem to have caught the learning bug once again and I’m now considering starting a home learning course on human biology. However, this time it’s personal as I want to cement the general medical knowledge I’ve gained in the past 4 years since being diagnosed with Neuroendocrine Cancer (Carcinoid) – read about this here Diagnosis – I’m no longer in control […]