Why the MRIs are so upsetting, well, one reason

I've never told most people this. Only a few people know. It makes me so angry to talk about it, that I don't talk about it. First let me say that when I was diagnosed with breast cancer - it was more than a shock, even to the doctors. Because I was 28, with no family history and not a single risk factor. I'll post that story too, sometime soon - because it could save some one's life.

So, the MRIs. When I was diagnosed, I had a breast MRI - to get another picture/different picture - something for comparison later, and to look for anything else that might be cancer. The problem with breast MRIs is that MRIs are extremely sensitive and pick up all kinds of things that are nothing. They pick up lymph nodes and hormonal enhancements and you have to time it just right in your cycle - it has to be between days 5 and 8, otherwise, you are going to get all kinds of things that show up. Some doctors won't do breast MRIs as a breast cancer screening tool because of this. Other doctors will because mammograms are not as good on young women because young women tend to have dense breast tissue. I happen to have very dense breast tissue. So the first MRI was at the very beginning. Yup - tumor was most definitely there. The fist MRI was done on day 21 of my cycle because it didn't make sense to wait.

Then I started taking chemo drugs shortly thereafter. I did the chemo first, before surgery, with the hope of shrinking the tumor and losing less breast tissue. I did 8 rounds of chemo but I had the follow-up MRI the day of the 8th treatment. Amazingly - the tumor was gone. GONE. 7 chemo treatments and it was gone. What showed up was some residual enhancement in the area where the tumor was. This was good news because chemo drugs work, but they don't usually work this well, only less than 30% of the time does someone have what they call a "complete" response to chemo. I had the best possible outcome that one can have to breast cancer treatment. Even more amazing was the fact that the tumor I had - was 4cm. It was huge. It was gone.

The radiologist called me after that 2nd MRI to tell me that the tumor was gone. And oh by the way she says, that nodule on the left (note that the tumor was in my right breast) - it's still there and it's the same size, so that's good. Wait what? The what on my left side? There's a what on the left side? What are you talking about - no one told me that something showed up on the left side? NO ONE BOTHERED TO CALL ME AND TELL ME THAT MY FIRST MRI SHOWED SOMETHING ON THE OTHER SIDE. WHY THE FUCK DIDN'T ANYONE TELL ME THAT MY FIRST MRI SHOWED SOMETHING ON THE OTHER SIDE? No one could answer that question. I promptly started freaking out. My surgeon blamed the radiologist, the radiologist blamed the surgeon. The head of the breast clinic eventually admitted that yes, I should have in fact been told, and yes, it was in fact a mistake that I hadn't been. A mistake.

It took me quite sometime to get that man on the phone and to get him to admit they had made a mistake. My surgeon said it was so tiny and so unconcerning that it probably just slipped by because no one thought anything of it. It just slipped by. And, she said, the fact that it showed up the second time was good news - probably a lymph node or a hormonal enhancement. It could plausibly have been hormonal on the first MRI - because the timing during my cycle was bad. But for the 2nd MRI - I had no hormones, I had no period, I was in menopause from the chemo drugs. But regardless she said - it's still there so it isn't cancer, because if it was, it would be gone because the tumor is gone. So don't worry. Right, okay. I then had another radiologist tell me that she wasn't sure she really could see it on the 2nd MRI - so was it or wasn't it there? And if it wasn't there on the 2nd MRI, what does that mean? That it wasn't there because it was cancer and the chemo got it, or it wasn't there because it had been hormonal? We will never know.

My point - in all the arguing that I did with my doctors and the hospital - was simply that we will never know. We will never know for certain whether I had it also on the other side and by not telling me BEFORE I took any chemo drugs, they took away all my options to know. If they had told me, we could have biopsied it. We could have done a lumpectomy over there and checked the area. We could have checked. Now granted my doctor might not have wanted to go digging around over there if she thought it was nothing (like I said, they don't like these MRIs for this very reason - you go digging for things that are nothing) - BUT THE POINT IS, THEY TOOK AWAY MY CHOICES WHEN THOSE STUPID MOTHERFUCKERS DIDN'T BOTHER TO TELL ME. By the time I knew that there had been something on the other side, it was too late. We couldn't even take out a chunk of tissue at that point and check it - because the chemo worked so well, that when they took out the breast tissue where the tumor had been - they didn't find a single cancer cell in it.

Why does this matter so much? You might say - well, if it was cancer, it's gone. It matters because they tell you that you have to do radiation because radiation significantly reduces the risk of recurrence. I did radiation on the right where we knew I had it. But I didn't do it on the left because we (they) assume it was nothing. So that means if I did have it on the left, then the odds of it coming back are much higher because I didn't have surgery over there or radiation. I tried desperately to get out of doing radiation - I tried everything to get out of it - everything. And in the end I did it because my doctor said to me - they type of cancer you had is as dangerous and deadly as it can be - so you should do everything you can, because why in the world would you give it a chance to come back and spread the second time?

Right. Uh huh. Good point. And what about the left side and the fact that we don't know if I had cancer there? What if it comes back, right there, and it spreads? What if? Yes, it could be a lymph node. No, it probably wasn't cancer. But the point is, we'll never know.

I had a third MRI in March of last year. The nodule wasn't there.

Part of what we are looking for on the MRI is that nodule or lymph node or whatever it was. And I'm just scared because we did everything we could on the right, but not on the left. All because of a mistake - a little something that just slipped by. But it's the kind of mistake that can mean the difference between life and death. Because seriously, what if I had it there and I get it again and it spreads before we catch it? I don't think I'll ever get comfortable with what we don't know about the left side. I will always worry, because we don't know. It's an uncertainty that I'm uncomfortable with.

And I'm still really fucking angry about it because they took my choices away from me and now I have to live with the uncertainty. I'm sure that if this hadn't happened, these MRIs would still be stressful - I'm sure of that. But what happened makes it worse - it makes the whole thing worse.