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"
Hello Milkytea
I prefer mine slightly stronger 
I am 8 months post surgery and chemo, the second round of chemo is tough in its self, My body could only manage 2 of the 4.
At 8 moths I have just had a stretch of the pyloric but the said it is a pinch twist that is causing the problem with new reflux/ sickness, they will fix with an operation this Sunday.
The CT scan has shown a small nodule on my L Adrenal, they are surprised but intend to go in and remove it in another two weeks, I found this out yesterday and am still processing atm, a right head £***
Have you had any more information yet ? Good that your oncologist has stayed grounded for you.
The consultant has order a Pet scan to confirm
Best wishes Jennie 
Hi Jennie. Thanks for the post. Unfortunately the news hasn’t been too good. They still aren’t sure about the adrenal gland nodule, even after a focused MRI so we’re planning on starting me back up on chemo (as without proof they’d rather give benefit of the doubt).
Unfortunately, in the two weeks after getting that news I’ve developed a bunch of new symptoms: migraines, wobbly legs, inability to go to the loo, etc. I ended up in A&E due to them which led to more MRIs which has unfortunately shown my cancer has spread to my brain and spine (hence all the neurological conditions).
Seems to be pretty rare this happens, but it seems to be terminal with (what they say is) 3-6 months to live. I do have a treatment plan which should tackle the worst symptoms over the next week, and thankfully my tests show I should respond well to a very successful immunotherapy but sadly it seems I’ve drawn the short straw in other regards! At least I should have time to organise stuff and I’ll be fighting for as long as I can.
Fingers crossed for your nodule though. Given the length of time post-surgery it sounds like it’s more likely to be one of the far more common incidental and benign nodules. The funny thing with mine is it’s now a case of “I guess we’ll see how treatment for the other tumours affect it” to see if it’s actually cancer or not 
Thankfully all the staff in the hospital are making me as comfortable as they can, though sadly circumstances/shortages are making their jobs way harder than they should be (as most people here probably know), especially with the ward I’m on right now. They’re all saints though!
And yeah, hopefully I should be out by the end of the week if all goes well and be able to spend time with friends and family. They just need to ensure I’m safe enough to leave as last thing they need is me being straight back into A&E causing them even more problems! 
Hi Milkytea
What a shit diagnosis for you, I hope the treatment gets on top of your symptoms and you are home soon with your family.
I have had my hernia fixed and await a Pet scan in two weeks to confirm it is one nodule and no other spread.
hugs and best wishes Jennie
