Swollen optic nerves

pesky904

saw my eye doctor today and suddenly my optic nerves are swollen?

Eye doc says this could be due to a mass or intracranial fluid or pressure. Anyone have any experience with this

KBeee

What is their plan to asses the cause?

pesky904

As usual, being post-active treatment, the "plan" is disjointed and unclear and will likely require me to do my own following up.

Of course my appointment was late Friday afternoon, so nothing happened that day. The eye doctor said she would send my oncologist a note suggesting they take another look at that area on my recent PET scan (as brains are harder to assess on PET and as we found out with the recent mistaking of a lesion on the wrong side of my body, unfortunately, my scans don't seem to have been very rigorously assessed.

My guess is I won't even hear from my oncologist and I'll have to call them to find out if this should be checked out. I'm not currently on any meds and was triple negative, so no hormones or anything that could be causing this.

I've had bad vision/astigmatism my whole life and have worn contacts for over 25 years, so always yearly eye exams, but I skipped last year's eye exam because of everything going on. But in the previous 25 years, I was never told about any issues with my optic nerves.

Anonymous

I would ask for a brain MRI

pesky904

I just had a full body bone scan and a PET scan. It was a struggle to get my insurance to pay for those so I'm guessing a brain MRI will be equally hard to get them to agree to.

I'll be interested to see if I even hear from my oncologist about this. If I end up having to call her to follow up about it, rather than her calling me, I'll be very annoyed.

Spoonie77

Pesky - I'm sorry to hear about the vision/optic nerve issue. Very stressful to hear about I'm sure. Hoping your team can figure out what may be the cause asap.

I'm curious, are you on Tamoxifen or an AI ? I know there are known eye issues with a small percentage of patients, including Optic Nerve swelling and color perception reduction.

The only reason I know any of this is I had my own eye scare earlier this month. Swelling, pressure feeling, pain and decreased vision in my R eye. I was on Tamoxifen.

Please keep us posted. Wishing you success in finding answers.

"Tamoxifen, a therapy for women with hormone-receptor-positive breast cancer, is known to increase the risk of cataracts and to cause retinal pathology in a quite small proportion of women. In addition, there is evidence that tamoxifen affects the optic nerve head more often than previously realized (albeit at a subclincal level) for women older than ~50 years. Both tamoxifen and anastrozole (a commonly used AI) can affect color perception as assessed under certain laboratory conditions; these altered perceptions may reflect a neural-response sluggishness due to reduced estrogen activity . Other AIs have not been tested in this way."

https://bcaction.org/2011/08/26/breast-cancer-medications-vision-effects-of-treatment-for-early-stage-disease/

"Though not a common side effect, breast cancer treatment may affect your eyes, including your vision.

Eye problems may include:

• red, itchy, or dry eyes
• watery eyes
• conjunctivitis (pink eye)
• blurry or double vision
• seeing dark spots"

https://www.breastcancer.org/treatment/side_effects/vision_probs

"Tamoxifen Linked to Swelling Within the Eye

Optic Cup Size Smaller in Tamoxifen Users . The investigators found that the optical cup volumes of the tamoxifen users were significantly smaller than the cup volumes of the anastrozole users, which were indistinguishable from normal."

https://www.medscape.com/viewarticle/552140

Peregrinelady

She mentioned in a previous post that she was triple negative and not on any meds, but I agree that antihormonals do affect the eyes. I have very dry eyes form Anastrozole and need to make an eye appt. today. Just one of the many appts. we have to make.

Spoonie77

Thanks for the additional info Peregrinelady.

Pesky - Since you aren't on any meds, I sure hope you will follow up with your MO about this and they get insurance to approve a brain MRI sooner than later. Keep us posted.

Anonymous

Pesky, I know how difficult insurance companies can be about advanced imaging. But if the brain MRI is needed to assess an emergent condition, as opposed to routine monitoring, that might make it more "acceptable" for them. Hopefully, your docs will help get it approved for you. PET is not really great at assessing our brains, my understanding is that there is too much normal, naturally occurring metabolic activity in the brain for it to be differentiated from malignant activity. I am monitored with PET/CT scans but they always go just from the base of skull to the knee. Hoping this turns out well for you, in all respects.

pesky904

Thank you all for these replies.

Olma61, does the base of the skull not include the eyes? My PET was taken from skull base to mid thigh also.

Anyway, I sent a note to my MO through my patient gateway yesterday following up, letting her know she should have heard from my eye doctor and mentioning that I wonder if the optic nerve swelling is related to my ongoing nausea, dizziness and headaches. So I spelled out my ongoing symptoms in writing (which I've also discussed with her at each appointment).

I just got a response from my MO through the gateway system. It said, "Thank you, Pesky."

That's literally all it said. Seriously. Three words. Didn't even address my comment about whether the optic nerve swelling is related to my symptoms.

Even though my MO has repeatedly told me I am high risk for recurrence (I had a huge 10cm grade 3 triple negative tumor, 3cm residual tumor at my mastectomy, margins less than 1 mm) I am now convinced that since I am no longer in active treatment, I am viewed as paranoid and no one is concerned about anything and won't do anything unless I present with severe pain or other severe symptoms.

I'm frustrated and I just give up. My next appointment with my MO is not until late August. I'm too tired to push this. Plus I have to find a job and it's stressful trying to do that while juggling appointments with different doctors. Guess I'll just wait until my next appointment and hope this is nothing.

Anonymous

yes, pesky, base of skull woul be from around the lips downward. Would not include your eyes. Best of luck with your job search, too

KBeee

Call and speak with MO directly.

JMouse

Pesky904, I'm so sorry you're going through this. Sometimes it feels like a battle just to be treated as yourself and not the statistical average of patients like you.

Did you have any luck getting a brain MRI? If not, would your eye doc be willing to call your MO and argue your need for a scan? Or, would your insurance allow you to see a neurologist? With your nausea, dizziness and headaches, that should be a slam dunk even if the assumption is migraines, and then maybe you'd have another doc pushing for a scan? (I had a brain MRI when I was diagnosed with BC simply because of my migraine history.)

I hope you get answers really soon. I wish I could send you stored strength to pull out when needed.