My Cancer is Rarer Than Your Cancer

This post probably won’t mean much to folks who aren’t cancer geeks, but if pathology is exciting to you, read on!

So, you may remember that when I was initially diagnosed, the pathologists who first looked at my biopsy, at the hospital where I get treatment, said that my cancer is neuroendocrine breast cancer. Neuroendocrine breast cancer is ridiculously rare, like 20 U.S. cases per year, out of about 240,000 total breast cancer cases. Neuroendocrine tumors in general aren’t that common–about 12,000 U.S. cases per year, and they typically grow in the intenstines, pancreas or lungs. 

When I had my second opinion, they sent that same biopsy sample off to a different lab, for a different pathologist to look at it. That pathologist said it was invasive ductal carcinoma with neuroendocrine features. Now, invasive ductal carcinoma is the most common form of breast cancer, but it having neuroendocrine features isn’t that common. My oncologist and I scratched our heads at that one, but moved on with a chemo regimen that would be effective on both breast cancer and neuroendocrine cancer. That way, all the bases were covered.

When I had the biopsy of my sternum tumor to confirm that it actually was cancer, the first pathology lab looked at it and said, “Yep, neuroendocrine breast cancer.” That same lab did the pathology on my liver biopsy this year, and sure enough, they found it to be neuroendocrine breast cancer.

At that point, I asked my oncologist if we could send my samples to a third lab, to act as a tie-breaker. So he did–he found a guy at the University of Pennsylvania who’s well respected, and had him look at it. And what he found in that initial sample from my breast was ductal carcinoma in situ, along with neuroendcrine breast cancer. Which completely blew my mind.

You see, ductal carcinoma in situ is also referred to as Stage 0 cancer. When you hear about the increase in diagnoses of cancer that comes from mammogram screenings, most of that is DCIS, and it’s also the center of the debate about overtreatment. Most DCIS won’t ever turn into real cancer–in situ means “in place”, because it hasn’t spread out of the duct it’s in, so it’s not dangerous. But the problem is, we don’t know which DCIS will turn into an invasive cancer, or will end up fostering a happy home for an invasive cancer. Which is why doctors treat it like it was an invasive cancer–nobody wants to look back a year later and say “Ooops, we should have cut that out of you, because now you have a more serious, harder-to-treat cancer.”

Hearing about this DCIS/neuroendocrine combo finding prompted my oncologist to talk to the second pathology lab and ask them more questions about what they found. Turns out, they’d also found DCIS and neuroendocrine breast cancer, but had classified it as invasive ductal carcinoma with neuroendocrine features, instead of calling it what it is. And the first pathology lab had missed the DCIS completely, which is why they just called it neuroendocrine breast cancer.

Does any of this really impact my treatment? No, but it does tell me a lot about how my cancer came to be, and psychologically, that’s somehow comforting to me. It appears that I was one of those very few people for whom mammogram screening at a very early age might have helped–except, there was no way to know that. I don’t have a strong family history of breast cancer, and I don’t have any genetic predisposition to breast cancer. My cells just went sideways on me, and as my doctor told me when I found out I was stage IV, there is nothing I could have done to prevent this. I did everything right based on the information I had. Cancer’s just a sneaky asshole.

At the same time, it’s kind of alarming to hear that three different labs came to three different diagnoses based on the exact same tissue sample. It’s a reminder that medicine isn’t a precise science–it’s extremely complex, and sometimes subjective. This is why it’s important to get second and third opinions.

So, now we know that my cancer is indeed rarer than your cancer, as one of my funny cancer t-shirts says. I’m totally gonna make an awesome research paper someday!

3 thoughts on “My Cancer is Rarer Than Your Cancer

  1. I have atypical carcinoid of the lung, and I am always saying how rare my cancer is, but you have me beat! I had my right lung removed in April 2014 and since April of this year, I have mets to liver, adrenal gland and pancreas. I had 4 rounds of cisplatin/etoposide before surgery, and for the mets, I am now taking CAPTEM, which I am finding to be pretty rough. I’m also relatively young (45) with two children (8 and 12 years old), and I have been working in the legal field (as a law professor). I just found your website today and have read several of your posts. You are a wonderful writer. I too like to face the reality of my situation, and it is really hard. I wish I could find support like you have been able to find in the metastatic breast cancer community. Lung cancer support groups aren’t nearly as prevalent because it kills people so often and so quickly. 195 women (and 236 men) die of lung cancer each day, and half die within a year of diagnosis. All best wishes, Lesley

    1. I too had cisplatin and etoposide, last year. Not an easy combo for sure, but then, none of them are awesome. I really feel that those of us with advanced cancers have more in common with each other than we do with those with early stage disease that started in the same body part. I wish the support group systems out there better reflected that–I think we have a lot to learn from each other!

  2. That is alarming (different labs with different findings)! Yours is much rarer than my cancer. I had a breast full of DCIS, they didn’t measure it because it was so extensive. So I was a 30 year old that had DCIS that became invasive cancer, which usually takes 10ish years? Makes my brain hurt when I try to think how long I have had cancer.
    Mandi recently posted…NED and I Can’t be FriendsMy Profile

Comments are closed.