Making tough ocular treatment decisions

“You’re practical,” she said, when I told her I didn’t see any point in doing a biopsy of my left eyeball. My ocular oncologist readily agreed with me, and I think you may, too, after I give you more details. From there, she laid out my treatment course.

First, why would I need a biopsy at all? Because after all the cancer diagnostic tests I’ve undergone in the past two and a half months—an MRI of the liver, a CT scan of my abdomen, a mammogram, a full-body PT-CT scan, and, most recently, an MRI of my brain—it is clear I currently do not have a primary cancer site outside of my eye. Exactly what I want to hear!

But it leaves the atypical mass in my left eye still to be a bit of a mystery.

I spent the afternoon at the eye clinic yesterday. First, I got an ultrasound to examine the internal structures of the eye and measure the tumor. Then an optical coherence tomography (OCT), which provides detailed images of the eye’s structure; followed by a fluorescein (organic neon yellow dye) angiography to view the blood vessels and flow in the eye.

All that took a couple of hours, but served to reveal only that nothing much had changed in my eye since my last batch of eye tests in October. And didn’t solve the mystery.

A lot of people asked me if it was frustrating not having a clear specific diagnosis, but I didn’t mind, I just chose the most optimistic diagnosis.

Karen Duffy

The only possible test left, therefore, would be to do a biopsy to determine whether the mass is a metastasis from my breast cancer or a choroidal melanoma (primary cancer). The treatment for both, when there is no other primary cancer site, is localized radiation, but not the same strength and type of radiation.

About the biopsy, in brief: Local or general anesthesia is used to perform a biopsy of the eye. An ocular surgeon makes a slight, precise cut in the eyeball to access the targeted area, i.e. the mass. With specialized microsurgical instruments, they go in and carefully remove a tiny piece of tissue from the eye. The incision is closed, often with fine sutures. And finally, a pathologist determines the nature of the tissue by looking at the cell structure.

Picturing that process is uncomfortable, isn’t it? Yuck! I get why from the start my doctor wanted to avoid a biopsy!

In my rare case, a biopsy is even more precarious than usual. The mass sits in the back of my eye and close to my optic nerve. To get to it, the surgeon would have to maneuver around my optic nerve, a demanding task involving a high risk of further eye damage. All that, and there’s only a 50-50 chance enough tissue could be picked up to do a proper analysis!

So my brain screamed, no thanks! I felt grateful the good doctor instantly agreed.

We moved on to talk about treatment: radiation really is the only option for me.

Some people with similar cases decide to do nothing, I was astonished to learn… perhaps out of fear of pain? That feels foolish to me.

Choosing to avoid uncomfortable feelings offers immediate short-term relief, but avoidance can lead to long-term consequences.

Amy Morin

While it’s probable that nothing will bring my left eyesight back, I’m not willing to increase the risk of having this tumor develop into a new site for cancer that spreads to other parts of my body. And yet, you may recall I find these medical procedures and our decisions made quite a crap shoot. There is no certainty.

My ocular oncologist explained she wanted to treat my eye with plaque brachytherapy. It is the most common radiation treatment for most eye melanomas. (As an aside, I am thankful to be in Canada, as my ocular oncologist in the Philippines told me plaque therapy is not yet available there.)

The procedure involves surgically placing and sewing (!!) a small disc (about the size of a quarter) containing radioactive “seeds” (known as a plaque) on my eyeball near the tumor. I’ll go under general anesthesia for this part—whew, can you feel my relief?

The goal is to get high doses of radiation (gamma rays) precisely on the tumor, while minimizing exposure to surrounding healthy tissues—including my brain!

The radiation dose is higher for melanomas than metastasis, almost double. I asked whether we could consider using the lower dose, and if that didn’t shrink the mass, go for the higher—not that I was eager to undergo this procedure twice! Her answer was no, they could not attach the disc a second time if it failed the first time.

I then asked about the risk of using the higher dose if the tumor was metastasis (can’t write “only,” can I!). None on top of the main risks of higher doses—increased possibility of side effects like cataracts, dry eye, burst blood vessel, or vision loss. Since she had already made it clear that I wasn’t likely to get my vision back anyway, I choose to ignore this for now and hope for the best outcome.

Don’t obsess over risks. Keep your focus on positive outcomes.

Deepak Chopra

So there’s a plan. On February 1, I go into the hospital for the disc insertion. I stay in the hospital under observation overnight. The disc will stay in for a week. Then I go back into the hospital as an outpatient to remove the disc.

I’m forewarned not to expect to know the full effect of the radiation on the tumor for three to six months.

That’s all I’ll write today. I plan to focus on joyful things for the next two weeks, and not ruminate on what I imagine won’t be the most pleasant thing to go through. But in my next post I’ll share more on this part of my heroine’s journey, when it’s happening.

Have you or someone you know faced a similar journey? I’d like to hear about your experiences and how you navigated the challenges. Please share your stories in the comments below. Also, if you have questions about my experience or want to know more about any aspect of my treatment journey, feel free to ask. Let’s support each other through our shared experiences.

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