Interview with ocular melanoma warrior: Danet
Danet is a mother of three children, an SMM specialist at the in "A cure sight" foundation, and she also pulled out a "lucky ticket", becoming one of 6 people among a million who are diagnosed with ocular melanoma.
For Danet, 2020 will be remembered not only as a time of a crazy pandemic. It was summer and the heroine and her family decided to arrange a nice vacation from the Arizona heat.
"I woke up in our family house, and my vision in my right eye was completely different. I thought, "OK, my contact must have dropped out" and came to find out that my contact was in my eye, he just didn't do anything. It was Tuesday, I got through the rest of my vacation until Thursday came, and I thought, "Okay, it's not getting any better." My husband has already returned home to work and eventually made an appointment with my ophthalmologist. She checked my eyesight in January 2020 and didn't see anything.
But in July 2020, she looked at my eye again and just said: "You know, I really can't see anything, I really can't see anything inside your eye, as if it's clogged with blood, fluid or something else," and added: "I think you have a retinal tear." Literally 15 minutes later, she sent me to another specialist on the other side of the city. They took me there, and I stayed there for a few hours, just doing a lot of other tests, and it ended up with something like an ultrasound of my eye, and the doctor came back and basically just told me, "You know, you really have a retinal tear, but it's not just like that. It's actually because you have a tumor in your eye, and I'm pretty sure it's something called ocular melanoma". The following week, he was officially diagnosed with ocular melanoma".
Then Danet explained to us how the tumor is localized in the eye using the example of the layers of the bulb. The bow and the eye have in common the fact that they have several layers. The outer shell is called the conjunctival layer, and then comes the inner layer - the vascular membrane. It looks like the tissue inside the eye, but it's not the retina.
"My tumor grows under the retina, sprouting into the cavity of my eye, and it will grow closer to my nose, in the front corner of my eye. So, because of this location and partly just because of how suddenly my vision changed, they gave me several different options, my doctor advised me to either undergo radiation or do something called nucleation. Because when you have a tumor that is in this layer of the eyeball, you can't cut it out".
With other types of ocular melanoma, treatment may consist in excision or cut off by a surgeon In the case of Danet, due to the fact that her tumor is located inside the eye, this layer is similar to the inner layers of the onion, and doctors cannot, for example, take and cut out one of these inner layers without causing irreparable damage to the entire bulb. Therefore, the treatment options for her were proton beam irradiation, which was not recommended to her, simply because it would have to travel outside the state, brachytherapy or nucleation, which consists in the complete removal of the entire eyeball.
"In August 20, Danet began treatment with brachytherapy, which consists in spot radiocontinence of a tumor in the eye.
"To do this, a special plate is inserted into the eye, inside of which there is a radioactive element. The size of the plate differs depending on the size of the tumor, but the thickness is quite large, as if you had ever seen a U.S. quarter or something like a money coin, put two or three of them together, and it's about that thickness. So, this is a very hefty piece of metal, and they put radioactive seeds on its inner seven-day layer, and then carefully place it on your eye, and then send you home for a week".
"I woke up in our family house, and my vision in my right eye was completely different. I thought, "OK, my contact must have dropped out" and came to find out that my contact was in my eye, he just didn't do anything. It was Tuesday, I got through the rest of my vacation until Thursday came, and I thought, "Okay, it's not getting any better." My husband has already returned home to work and eventually made an appointment with my ophthalmologist. She checked my eyesight in January 2020 and didn't see anything.
But in July 2020, she looked at my eye again and just said: "You know, I really can't see anything, I really can't see anything inside your eye, as if it's clogged with blood, fluid or something else," and added: "I think you have a retinal tear." Literally 15 minutes later, she sent me to another specialist on the other side of the city. They took me there, and I stayed there for a few hours, just doing a lot of other tests, and it ended up with something like an ultrasound of my eye, and the doctor came back and basically just told me, "You know, you really have a retinal tear, but it's not just like that. It's actually because you have a tumor in your eye, and I'm pretty sure it's something called ocular melanoma". The following week, he was officially diagnosed with ocular melanoma".
Then Danet explained to us how the tumor is localized in the eye using the example of the layers of the bulb. The bow and the eye have in common the fact that they have several layers. The outer shell is called the conjunctival layer, and then comes the inner layer - the vascular membrane. It looks like the tissue inside the eye, but it's not the retina.
"My tumor grows under the retina, sprouting into the cavity of my eye, and it will grow closer to my nose, in the front corner of my eye. So, because of this location and partly just because of how suddenly my vision changed, they gave me several different options, my doctor advised me to either undergo radiation or do something called nucleation. Because when you have a tumor that is in this layer of the eyeball, you can't cut it out".
With other types of ocular melanoma, treatment may consist in excision or cut off by a surgeon In the case of Danet, due to the fact that her tumor is located inside the eye, this layer is similar to the inner layers of the onion, and doctors cannot, for example, take and cut out one of these inner layers without causing irreparable damage to the entire bulb. Therefore, the treatment options for her were proton beam irradiation, which was not recommended to her, simply because it would have to travel outside the state, brachytherapy or nucleation, which consists in the complete removal of the entire eyeball.
"In August 20, Danet began treatment with brachytherapy, which consists in spot radiocontinence of a tumor in the eye.
"To do this, a special plate is inserted into the eye, inside of which there is a radioactive element. The size of the plate differs depending on the size of the tumor, but the thickness is quite large, as if you had ever seen a U.S. quarter or something like a money coin, put two or three of them together, and it's about that thickness. So, this is a very hefty piece of metal, and they put radioactive seeds on its inner seven-day layer, and then carefully place it on your eye, and then send you home for a week".
According to our heroine, the next week seemed like hell to her. At that time, she had a 9-month-old baby and 2 more small children, but because of the active radiation on her body, she could not be near them. It was also painful, as there was a giant piece of metal in the eye that was stuck for seven days. The first two days Danet spent almost blindly, because it was much more difficult for one eye to cope with its functions, and secondly, if she closed the other eye, it started to hurt. A week later, the metal was removed and further treatment was reduced to recovery and waiting for the results of tests.
"I was given aspiration with a thin needle and a biopsy. So, it's like a tiny little area where they inject a tumor to get a tiny piece of cellular material, and send it to the lab. In fact, one of the labs that we commonly use in the ocular melanoma community around the world is Castle Biosciences. They do molecular testing of the cellular material, and check only some of the different markers that have been examined to indicate how high the risk of this tumor is.
So, in many other cancers, for example, you have stage one, stage two, and you have roughly these levels of how far your cancer has progressed. Depending on the genetic composition and molecular composition of the tumor in your eye, it is, in fact, considered as a stage, as the first, second or fourth stage, as if they were somehow skipped. But there is a first class, a second class, and then there is a first class in between, or it's like Class 1A, Class 1B and Class 2. So they're basically trying to determine, for example, how likely is it that this cancer has shed a few cells that then get into your optic nerve and through the bloodstream to start causing the cancer to spread somewhere else in the future? We don't know exactly when".
One of the questions of our conversation concerned the relationship between poor vision and the development of ocular melanoma. As it turned out, the appearance of emptiness absolutely does not depend on visual acuity. Of course, there are people who wear glasses among those with melanoma of the eye, but it is rather a happy accident that such a disease is detected, since people with poor eyesight regularly turn to an ophthalmologist.
"I have other people who haven't seen an optometrist for 10 years because they have excellent eyesight and they really didn't have to go to an optometrist for glasses or contact lenses, and then one day their vision changed, or a spot appeared on their eye, or they started seeing like flashes or floating objects".
Now Danet works in the non-commercial foundation A cure in Sight, whose main task is to inform people about ocular melanoma.
"We tell the public, for example, that it is necessary to take eye exams more often, if you are in a high-risk group, you are guaranteed to go and check your eyes. Because it is much easier to treat patients whose tumors are detected at an early stage when they are small and much less aggressive. Basically, if you think about the difference between a patient who has a grade 1 tumor and a grade 2 tumor, it's the difference between a couple of millimeters, so you know that less than the size of the tip of your little finger, more than the size of my thumb. It's the difference in the size of these tumors inside the eyeball, and when they get really big, it's not always true, but it's almost always true that they're much more aggressive.
So it's like the difference between stage 1 cancer in your eye and stage 4 cancer in your eye, and if it's stage four in your eye and it's spread somewhere else, it's like immediate stage 4. There's nothing like what you're not doing. you don't go from stage 4 in the eye and go back to stage 1 in the liver, as if it's immediately very high risk, very low, very low survival. The best, best way to avoid this is to carry out preventive care and supervision, and then, if you do get diagnosed, just trust your doctors, and if you don't trust your doctors, find doctors you trust".
Since it was the first time I encountered a warrior who had experienced ocular melanoma, it was logical to ask - how can I protect myself from this disease?
"I think the most important thing for me would simply be that if you haven't checked your eyes yet, even if you have good eyesight, just make an appointment for a regular checkup with an ophthalmologist. Make sure you and your family are getting ready for an eye exam. It's a rare disease, but it's the most common form of eye cancer, and the best thing you can do for yourself is, you know, catch it at an early stage. As for maybe someone else who may be watching, and he has been diagnosed with a rare form of really any kind of cancer. It's hard to live in the unknown. Because, you know, if such a diagnosis does something, then in fact it just reminds you of how mortal you are, and it can be really scary to face.
But I think I've found over the last couple of years that any confidence I had was a guarantee that I'd be here when my kids got married and had kids of their own. Any confidence I have is like a fake confidence, and so I guess I'm just learning to love, lean towards the unknown and believe that you're stable enough to figure it out".
"I was given aspiration with a thin needle and a biopsy. So, it's like a tiny little area where they inject a tumor to get a tiny piece of cellular material, and send it to the lab. In fact, one of the labs that we commonly use in the ocular melanoma community around the world is Castle Biosciences. They do molecular testing of the cellular material, and check only some of the different markers that have been examined to indicate how high the risk of this tumor is.
So, in many other cancers, for example, you have stage one, stage two, and you have roughly these levels of how far your cancer has progressed. Depending on the genetic composition and molecular composition of the tumor in your eye, it is, in fact, considered as a stage, as the first, second or fourth stage, as if they were somehow skipped. But there is a first class, a second class, and then there is a first class in between, or it's like Class 1A, Class 1B and Class 2. So they're basically trying to determine, for example, how likely is it that this cancer has shed a few cells that then get into your optic nerve and through the bloodstream to start causing the cancer to spread somewhere else in the future? We don't know exactly when".
One of the questions of our conversation concerned the relationship between poor vision and the development of ocular melanoma. As it turned out, the appearance of emptiness absolutely does not depend on visual acuity. Of course, there are people who wear glasses among those with melanoma of the eye, but it is rather a happy accident that such a disease is detected, since people with poor eyesight regularly turn to an ophthalmologist.
"I have other people who haven't seen an optometrist for 10 years because they have excellent eyesight and they really didn't have to go to an optometrist for glasses or contact lenses, and then one day their vision changed, or a spot appeared on their eye, or they started seeing like flashes or floating objects".
Now Danet works in the non-commercial foundation A cure in Sight, whose main task is to inform people about ocular melanoma.
"We tell the public, for example, that it is necessary to take eye exams more often, if you are in a high-risk group, you are guaranteed to go and check your eyes. Because it is much easier to treat patients whose tumors are detected at an early stage when they are small and much less aggressive. Basically, if you think about the difference between a patient who has a grade 1 tumor and a grade 2 tumor, it's the difference between a couple of millimeters, so you know that less than the size of the tip of your little finger, more than the size of my thumb. It's the difference in the size of these tumors inside the eyeball, and when they get really big, it's not always true, but it's almost always true that they're much more aggressive.
So it's like the difference between stage 1 cancer in your eye and stage 4 cancer in your eye, and if it's stage four in your eye and it's spread somewhere else, it's like immediate stage 4. There's nothing like what you're not doing. you don't go from stage 4 in the eye and go back to stage 1 in the liver, as if it's immediately very high risk, very low, very low survival. The best, best way to avoid this is to carry out preventive care and supervision, and then, if you do get diagnosed, just trust your doctors, and if you don't trust your doctors, find doctors you trust".
Since it was the first time I encountered a warrior who had experienced ocular melanoma, it was logical to ask - how can I protect myself from this disease?
"I think the most important thing for me would simply be that if you haven't checked your eyes yet, even if you have good eyesight, just make an appointment for a regular checkup with an ophthalmologist. Make sure you and your family are getting ready for an eye exam. It's a rare disease, but it's the most common form of eye cancer, and the best thing you can do for yourself is, you know, catch it at an early stage. As for maybe someone else who may be watching, and he has been diagnosed with a rare form of really any kind of cancer. It's hard to live in the unknown. Because, you know, if such a diagnosis does something, then in fact it just reminds you of how mortal you are, and it can be really scary to face.
But I think I've found over the last couple of years that any confidence I had was a guarantee that I'd be here when my kids got married and had kids of their own. Any confidence I have is like a fake confidence, and so I guess I'm just learning to love, lean towards the unknown and believe that you're stable enough to figure it out".
The interview was conducted by Karina Kibo, COO Artes Electronics
