In 2007 I was treated for ocular melanoma in my left eye. The two possible treatments were removal of the eye, or proton beam radiation, which is done through a cyclotron (at the time only available 3 places in the United States). I felt very fortunate that the proton beam radiation treatment was available just 20 minutes from my home, at UC Davis.
I have continued to see my eye tumor specialist every 6 months to have my eye pictured and prodded, and to have an ultra sound to measure the remaining tumor. My vision in that eye has gradually gotten worse the past few years.
The vision changes are a result of cataracts in that eye, probably a consequence of the treatment. The cataracts can’t be treated because there is bleeding inside the eye and cataract surgery would likely make me go blind. This week, in an effort to find out what the bleeding was about, they injected my bloodstream with yellow dye and watched what happened in the eye.
They found out that the blood vessels that were damaged by the radiation in 2007 are trying to repair themselves. They are creating new blood vessels, but aren’t doing a very good job of it. Those attempted new blood vessels are leaking into my eye.
So, to stop that bleeding, they did a laser treatment on that eye, destroying the part of the retina where those blood vessels are trying to grow. This doesn’t affect my sight because of the location of the tumor on the retina. But it was traumatic for me and my eye.
They will check it again in 6 weeks to make sure there is no more bleeding. Hopefully, in 6 months, I will be able to have cataract surgery to restore good sight to that eye.
At the time I chose to go through with the original treatment, I was told there was a 97% cure rate. Who wouldn’t go for that? This week they told me that more than 50% of those “cured” people have that cancer show up somewhere else in their bodies. Interesting that they didn’t tell me that at the beginning, but I should have been suspicious when the eye tumor specialist said I would see her periodically for the rest of my life.
I am still grateful that the cancer was treated “successfully,” and am again reminded how much collateral damage cancer treatments cause. Many of the bodily stresses I am currently dealing with are a result somehow of the treatments I’ve had for cancer over the past 25 years. I don’t mean to complain, but I think as more of us are surviving, it is important to acknowledge that one never goes back to the old “normal.” Our bodies, minds, and souls have been changed.
Thanks for this Jan, what a great reminder! The past is the past and we often want to go back to seek a level of certainty we believe we had then but we can’t seem to find in the present moment. Thanks for what you do!
Would you do anything differently?
Is the life that you’ve lead (the extra years from treatment) been worth it to you?
I ask because I am a person who does not do well with tests, doctors, medications and I often try to think what I would do if/when a tough situation like cancer arises.
For most of us, its not if but when. If not cancer, (although cancer is so likely), then something else.
I’m interested in your point of view.
Hi, Jan, I wince as I read of treatment to your eye. I get the sense of trauma when a procedure to the eye happens. May you heal from all the treatments and their late effects. I encourage your courage! Love you!
Jan, I think one of the new directions in the surviving/thriving community is one of more probing questions about “quality of life” after cancer. Are we to be so grateful to be alive that how our bodies, and subsequently emotional states are faring are irrelevant? This cannot prevail!
Jan, you are the first person I have encountered in my ocular melanoma journey who has also had breast cancer. As you know the causes of the mutations associated with ocular melanoma are not well understood, so there’s no way of knowing if the ocular melanoma might be a secondary cancer caused by our primary cancer treatments. Nevertheless, I note that there are two of us! I wish you well in the treatment of your eye, and hope that you and your eye specialist are able to restore sight to it. We are given so much to deal with, but somehow we carry on..! Joy to you.
Dear Jan,
I do empathize with your vision situation. Thank god that lasers can repair these growing cells. IF YOU CAN HAVE CATARACT SURGERY, Jan, it is an uncomplicated procedure. I wish you well and good vision.
Janis