Unexpected Results & a Two-Way Street

So, that didn’t go exactly as I’d expected.

I’ll preface this entire post with the phrase “I am fine” and “It’s not cancer” before anyone gets too concerned. In the next however many words, I feel compelled to share one of the most stunning personal positive examples of patient/provider communication I have encountered.

Just over a year and a half ago, I began taking the drug Tamoxifen to keep my estrogen loving cancer away. Within a couple weeks of beginning the drug, I noticed a flurry of side effects. One such side effect was a tingling in my lips. My much adored oncologist explained, “Tamoxifen is very drying, so it could be dehydration. Or, it could be a brain tumor.”

{deafening silence}

“It’s not a brain tumor!” I insisted.

She smiled, “It’s probably not. Let’s watch it.”

So I watched it.

I watched it continue to get worse.

In April 2014 I went to see my oncologist for a six-month check-up and to bid her a fond farewell before her maternity leave and subsequent resignation from the practice. When I mentioned the tingling had not only continued but had expanded, she ordered an MRI.

“It’s NOT a brain tumor,” I insisted again, much preferring to blame this and every other negative or annoying body ache-pain-swelling anomaly on Tamoxifen.

“I’m an oncologist,” she smiled reassuringly. “I think everything is cancer!”

On May 2, 2014 I had a brain MRI with contrast - the results were “No Intracranial Metastasis.” 

A great big happy dance ensued and life continued. While officially my face tingling was considered idiopathic, I have spent the past year happily blaming it on Tamoxifen*.

Most of my Tamoxifen side effects ebb and flow but in March my left side tingling had progressed to a numbness so severe I  found myself rushing to the mirror several times a week to check the symmetry of my face. No drooping? No problem.

Not really. I was frightened.

Rather than make an appointment with my new and not-so-favorite oncologist, I made an appointment with my beloved primary care provider who subsequently sent me immediately to a neurologist. And that is how I ended up back in the claustrophobic loud tunnel yesterday afternoon, lying very, very still trying to imagine only best case scenarios, counting backwards from 1000 by 3s.

The MRI/MRA test results arrived in my email inbox within four hours – an absolute record! Since I was receiving results via email, I knew the results could only be “This is nothing, have a good day!” But when I opened them, this is what I found from my neurologist:

I've reviewed the results of your recent MRI. This test shows no abnormalities to explain your symptoms on the left face. This is good news.

The radiologist wasn't able to definitively say but thought perhaps there is an aneurysm on the right side. He recommends that we get a follow-up view of the vessels in 6 months. If we do find something there, the size of it is so small that at this point it would not warrant any treatment. We will do the follow-up MRA that he recommended. I've ordered it for you today and as we get closer someone will contact you to schedule it.

UH. Uh?!?

The first two sentences were expected, the second paragraph was not. An aneurysm? An aneurysm? Those are bad. Like really bad.

I run, I cycle, I get excited at ball games, I get wound up when my kids don’t do their chores. And I might have a blood balloon ready to pop in my noggin?!

The first five minutes, I did nothing. I just thought, “It’s not cancer. That’s good. That’s REALLY good. But… uh…”

Perhaps I should have prefaced the results email with the fact that I met my neurologist merely 10 days prior to the MRI. She quickly made me feel at ease with her active listening, eye contact and what I felt was genuine interest in me as a person. In our short visit she asked all the right follow-up questions to make me feel that I was far more than a set of symptoms to her and I walked out of that office feeling as if we’d developed a plan together. I sent a follow up email thanking her for all of the above.

Since, prior to the noisy tunnel visit, we had already exchanged a series of gratitude related emails, I turned to technology one more time with the following:

Thank you for the lightning fast turnaround on my test results! Unfortunately while I expected the first part (and am THRILLED there are no growths/tumors in my noggin!), I was a bit taken aback by the mention of a possibility of an aneurysm. I realize it is simply the word itself that makes me nervous since I associate it with catastrophic health events.
I also realize that the radiologist was unsure so this is a 'maybe' option anyway.

That said I have a few questions:
~ Beyond returning for another scan in 6 months, is there something I should be on the lookout for (beyond the obvious signs of an active stroke) and/or be concerned about?
~ How common are similar tiny aneurysms in the general population?
~ Are the images available in my online EHR? Can I get them?

Again, thank you for the swift return of results - very much appreciated!

I read my email several times just to ensure my extreme anxiety was carefully veiled with overtones of pragmatism before I pushed send. Thankfully, she saw through my attempts at a cavalier attitude and responded immediately with:

Yes this is a "maybe" and not terribly concerning.
Still I get the concern that that word creates and that is appropriate concern. We all have heard of this word associated with really bad things.
Small aneurysms are fairly common in the general population and in your case we call this an "incidental finding" meaning that we found this only because we were looking for other things, not because it is related to your symptoms. 
Given the small size if we find it again and it is still this size there is not much we can do other than continue to do follow-up scans. However, the follow-up scans are important because it can change in size (increase) and then we would consider treating it to prevent the risk of rupture.

The things to look for are just as you would expect: stroke like symptoms.
Also a very very severe and sudden onset of headache would be concerning.
For either of these things you should plan to come to the ER for evaluation and let them know about your prior MRI findings.

CALLING ALL PROVIDERS: please re-read that email snippet one more time and let me point out the highlights, from a patient perspective.

Clinical Reality: “Yes this is a "maybe" and not terribly concerning.” Patients NEED this and expect it from you as their trusted healthcare provider. If I trust you, I trust your professional opinion.

Emotional Validation: “Still I get the concern that that word creates and that is appropriate concern.” Patients NEED this too. With these words I was completely validated as a human being with emotions and therefore much better suited to hear and trust the clinical realities. With those words, she leveled the playing field for me. She had understood my concerns and acknowledged they were valid concerns. And, feeling heard, I could trust her original clinically related statement – this is not terribly concerning.

The combination of acknowledging my anxieties, providing the clinical reality and adding the appropriate additional information to answer all of my articulated questions, took my stress level from an 11 ½ to a 4. With time, I expect that level of anxiety to continue to decline. Also, I tend to be easily distracted so a ‘maybe aneurysm’ will surely get boring after a bit.

Unexpected results such as these could have created quite the emotional quagmire. In fact, I've been in similar quagmires before. Had I sat quietly with my results and my fears, I'd still be sitting with both. The patient/provider relationship is a two-way street. Had I not reached out via email with my concerns and questions, my need for validation, reassurance and answers would not have been met. Had I reached out and not received emotional validation along with the clinical realities, my needs would not have been met either. Those unmet needs could have led to another time-consuming appointment or, perhaps worse, elevated cortisol levels and the invasion of unnecessary excess anxiety.

While the results were definitely not what I expected and I am still without a clear diagnosis on my face numbness (although trigeminal neuralgia is in the running whenever I feel like letting Tamoxifen off the hook), thanks to honest communication between patient and provider, I actually feel more comfortable today than I felt yesterday.

*Similar to many others, my Tamoxifen side effects suck and I’ve often referred to the drug as “a safety net made of razor wire.” That said, I made a decision to take the drug for one year as prescribed and then re-evaluate for the next year. I’m on month 20 and will either drop it or re-enlist on July 17, 2015.