I actually had a decent experience with this. Ended up being esophageal adenocarcinoma, stage III, which isn't the worst type of cancer, but doesn't have a great prognosis either.
The idea that it's not official until the patholigist says so did hold, however...
From the moment cancer was a possibility, my primary care doctor let me know. Let me know which types were possible, a short overview of each, and also what else it could have been...less concerning things like maybe a hiatal hernia, for example.
The GP sent me to another doctor for the endoscope, to look inside my esophagus, and that doctor gave me a similar overview. Then, right after that procedure, was very frank, something like "You know I can't say for sure, but it does look like cancer to me. The next step is pathology and a cat scan, and we'll know for sure within 4-6 days or so". He even fast-tracked me for these next steps by admitting me to the hospital so that the tests would be done quickly, versus the slower outpatient route. Just a few hours after the tests came back positive, they had an oncologist assigned, who again, was as polite and frank as he could have been.
So, while it may remain a crappy process in general, there are doctors out there that seem aware of the tension and anxiety and do their best to help.
PS: I'm a year past it all (chemo/radiation/surgery) now, and while it can still re-occur, I'm looking clean thus far. Also, this type of cancer is driven by long-term chronic acid reflux, so if that's something you have, and you're 40+, get yourself checked. Most people find out too late to do anything about it.
>regardless of age you should get it checked out. (not just if you're 40+)
Ah, yes. Guess I should have expanded on that a bit. If you've got chronic acid reflux, the ongoing symptoms of that aren't much different from the initial symptoms of esophageal cancer...even if you're being treated. So, suggesting that you ask about it specifically if you're 40+.
Anything unusual or new, though, yes, don't wait on that.
>(finish up my chemo/surgery/chemo+radio this friday... whoop!)
No matter how probable it is, without a definitive assessment, it is not responsible to announce such a dark diagnosis without certainty. You can't send people in this nightmarish process (as described in the article) if there's still a small % chance it is not the definitive diagnosis.
And yes, pathological diagnosis is rather long, ie a little week at least so the tissue can be fixated with paraffine, have immunohistochemical markers determine the type, etc. Yet I've visited a place when they could do fast recognition on breast cancers while the patient was on the table, and depending on the result either directly remove lymphatic nodes or not, but I guess this fast coloration is not available for less common tumors.
Even if IAs do the reading, for the moment there will still be delay to have a diagnosis.
>it is not responsible to announce such a dark diagnosis without certainty
I think that's the crux of the discussion here. For many of us, we're going to find out it's a possibility anyway, so what's the point of the doctor not acknowledging it? Actively witholding information just adds to the anxiety. Not asking for an early diagnosis, just a frank discussion about the possibilities.
Disclaimer, these are only hypotheses out of my own experience, and this seems to be extremely dependent on the doctor.
That's not an easy announcement to make, and without certitude you don't feel compelled to make it, so maybe a bit of easy way out ?
Cancer raises many questions (or so I guess), which takes a lot of time to clear out, for something only hypothetical so far (plus some people are really bad at understanding). Certitude will come a few weeks later and by then you will need to go through hour long appointments to discuss everything again. So lack of time.
Maybe it's wrong, I don't know, I just think it's not an easy question and there's no definite answer.
I was diagnosed with stage 2 colorectal at 33 which became stage 4 a few years in. I've been in remission for a year but I can't help but feel that 30 is the new 40 with regards to cancer. May be that mother nature trying to get a grasp on our population. I hear more and more cases of people getting it younger and younger.
I'm sorry for your diagnosis and hope you are surrounding yourself with good people through your journey.
As a doctor I will say that there is no real evidence of this decline in age of first cancer.
I respectfully suggest that you may have bias through the inevitable path your life has now taken, the people you talk to, see through your treatment etc.
An aside to this is that we are much better at detecting breast ca, prostate ca and cervical ca through screening which leads to earlier detection (and earlier staging, meaning higher survival)
What signs or symptoms did you have before your diagnosis? I'm curious it was found out, because AFAIK usually colorectal exams aren't recommended until 50+ (unless you've had other cancers).
I have a hiatal hernia and specifically was told that ppis were required to avoid this fate. I'm curious how you were led to getting checked out? Symptoms? I'm pretty religious about taking medicine, without which I will have all the typical symptoms -- feeling bloated shortly after eating, acid reflux, etc.
That's why, I suspect, this type of esophageal cancer usually has such a grim prognosis. It mimics symptoms you already have, so you ignore it until it's too late.
In my case, the pain was worse than usual, though I didn't consciously note that. What did happen is that I was eating less because of it, so I had unexplained weight loss. That caused me to see the doctor.
The idea that it's not official until the patholigist says so did hold, however...
From the moment cancer was a possibility, my primary care doctor let me know. Let me know which types were possible, a short overview of each, and also what else it could have been...less concerning things like maybe a hiatal hernia, for example.
The GP sent me to another doctor for the endoscope, to look inside my esophagus, and that doctor gave me a similar overview. Then, right after that procedure, was very frank, something like "You know I can't say for sure, but it does look like cancer to me. The next step is pathology and a cat scan, and we'll know for sure within 4-6 days or so". He even fast-tracked me for these next steps by admitting me to the hospital so that the tests would be done quickly, versus the slower outpatient route. Just a few hours after the tests came back positive, they had an oncologist assigned, who again, was as polite and frank as he could have been.
So, while it may remain a crappy process in general, there are doctors out there that seem aware of the tension and anxiety and do their best to help.
PS: I'm a year past it all (chemo/radiation/surgery) now, and while it can still re-occur, I'm looking clean thus far. Also, this type of cancer is driven by long-term chronic acid reflux, so if that's something you have, and you're 40+, get yourself checked. Most people find out too late to do anything about it.