Hey folks, it’s my first time posting here and I’m just looking for advice from other patients. To give a quick overview of my situation, I was diagnosed with Oesophageal cancer at the start of this year. After all the diagnosis had finished I was S3N1M0 (may have been N2 initially but definitely was N1 after surgery) with a 6cm tumour extending down into my stomach. So I started treatment, the usual 4 courses of FLOT which seemed to shrink lymph nodes but merely stop the tumour growing. Then I had surgery which the team was super happy with (got all the margin they wanted which was all clear, removed 70+ lymph nodes and only one was cancerous).
So I was feeling pretty good mentally (if still very rough physically). Then a few weeks ago I was having some issues with nausea (not unusual) so my doctor brought forward a planned CT scan to see what stuff can be found. The following day I had the first dose of my second course of FLOT. I was expecting everything to be fine, but I’ve had the news that the CT scan has found a nodule on one of my adrenal glands and the radiologist has said “likely cancerous”.
Now, my oncologist isn’t happy with that as CT scans aren’t definitive on this (I had a nodule my thyroid early on in all this which turned out to be benign). I’m scheduled for an MRI tomorrow which should hopefully give us definitive answer, but obviously all this uncertainty is terrifying me. Doubly so as I’m somewhat unusual in getting this sort of cancer in my mid-30s so am having to consider my mortality a lot sooner than I expected (especially as they’re claiming that if it is cancerous then they can’t do much).
What I’m wanting to know is: has anyone else experienced this sort of thing (especially post-surgery)? If not an adrenal nodule specifically then some sort of nodule elsewhere that doctors are unsure about? How often did you get such “surprises” and how did they go? Even if they were cancerous were you able to get them treated, even if it required talking to other oncologists or even going private? I know from the NHS website that adrenal nodules can show up incidentally in CT scans and 90% of the time they’re benign, but when you’re barely 3 months post-surgery I’m worried it worsens the odds.
Any advice on dealing with the uncertainty and mental stress would also be helpful. I know I’ll have an answer one way or another in the next week and a half, but it’s still tough trying to deal with such a life and death diagnosis, especially when still recovering from surgery and a dose of FLOT
Hi MilkyTea and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm not a member of this forum but noticed that your post hadn't had any replies. Responding to you will 'bump' it back to the top of the discussion list again.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
