Cat Shares Her Experience
Diagnosis: Retinoblastoma and bladder sarcoma
From a patient interview on Sept. 5, 2014
Cat was diagnosed with retinoblastoma when she was only two months old. This type of cancer is caused by a gene or cell mutation while a baby is in utero which explains Cat’s early diagnosis. For the family, the diagnosis was surprising since there wasn’t a history of cancer.
The cancer first started in Cat’s right eye, and she lost its vision, but the left eye was saved due to the quick action of her parents. Cat’s father had noticed a beam of light coming out from her right eye, and her parents rushed Cat to the hospital where the family’s luck prevailed. The specialist happened to be in the hospital on that day, and he immediately rushed Cat into surgery and saved the left eye, which he then treated with radiation.
With retinoblastoma, there is a high risk of developing another cancer and not just sarcoma. There’s an increased risk of cancer spreading and losing vision of the healthy eye. Cat was very fortunate. The cancer did not recur, but she was closely monitored as she grew older. Cat didn’t feel any different than other children but she grew up wanting to know the “why’s” behind her physical conditions. Radiation treatment had affected her depth perception and balance so she would bump into things. Thankfully, the radiation did not affect her cognitive ability.
“When you’re first diagnosed as a baby, then growing up, there’s difficulty understanding the ‘why’ question a lot of your life. Until, as you get older and mature, you get to ‘I think I need to know the why answer to the question.’”
Cat shares her personal story of her experiences with the Sarcoma Oncology Center:
After being in remission for 32 years, the last time I saw my specialist, he did talk about the sarcoma and he said ‘ There are chances of it either coming back in the uterus, the bladder, the lungs and possibly your breasts. ‘ It’s interesting, because after that year he talked about it, it came. It was one of those times when you’re not sure what’s going on. Signs of cancer can be overlooked. For it to come in through the bladder, I thought it was an infection, UTI. I did my research, I ‘Googled.’ Looking at the signs, it sounded like it was just a bladder infection. I called my doctor right away. ‘I think it is just an infection, I’ve read all the signs.’ I got the antibiotics but it didn’t go away. I thought then, ‘maybe it’s a kidney stone’ because then I started feeling more pain. You do the research and you think it’s this.
But what’s great, my primary doctors said ‘we are going to do additional tests. I get the feeling it is something else.’ So it’s great to have a doctor who is on top of things. We also went to the urologist to see what exactly was going on. And that’s when I went last year to see the urologist and he said ‘there’s a mass. That’s what’s causing everything.’ We scheduled surgery as soon as possible. So last year, in the early part of April, we had the surgery. My parents were with me the day of the surgery and he told them right away ‘it’s cancer. I’m 99% sure it is.’
What to do now? We went through this 32 years ago. How do we take upon this? Once I was told what it was, the urologist said he wasn’t specialized in this area so I’m going to send you to somebody unless you know somebody who is an oncologist. I have to tell you there’s a possible chance the bladder may have to be removed because it can spread. ‘Really?’ I sat there thinking, is that the only option? Having a bowel made into a bladder? That’s a big medical decision. My specialist told me there are oncologists out there that can maybe look at it. The urologist said ‘why don’t you do the search and let me know if you find the oncologist.’ Which was great, he was open about it and not just pushing it upon me because I do know some doctors do push it upon you. What was nice, he did a little bit of research to understand retinoblastoma and how it leads to sarcoma in the bladder.
After I got the news and I was by myself, I told my mom and she Googled and found Dr. Chawla. What’s great is that he’s on the web. It was great to search and find Dr. Chawla. That’s when we went and took the initiative. That Monday we made the call then filled out his form online. And contacted my urologist as soon as possible saying we’d found somebody. The urologist said he would take my verbal consent and I will forward everything to Dr. Chawla.
Meeting with Dr. Chawla I would say he was all open arms. It felt very comfortable. It didn’t feel like coming into a doctor’s office and being lectured. It was ‘we’re going to get you better.’ What was great was his reassurance of seeing another urologist, seeing another oncologist, everything just before we even start the chemo and say ‘this is what we are going to do.’ Everything was happening so fast, but it’s for a reason knowing that I didn’t have to remove the bladder, knowing that wasn’t my only option. It was relieving.
It’s one of those things for anybody. You feel that’s your only option and contemplating such a medical decision, it’s hard. When the first urologist told me that there was the possibility of removing my bladder, I actually even did some research just looking at retinoblastoma to sarcoma and everything. I read that it would be removed but then come back. So I thought, if it’s going to be removed, what about all the other parts of my body? Was it going to be worth removing? So I really trusted Dr. Chawla’s decisions. Let’s do the chemo, let’s do the radiation. He was not for removing the bladder as well. So we are going in that direction. Even in October to December, 24 hours of chemo for 4 days every agent combined with his technique and I think that has been effective as well. I actually completed the chemo this year at the end of January.
Cat’s recommendations to new patients:
It’s almost a second home to me. Dr. Chawla makes you feel that you can tell him just anything. Comfort in how you feel, what’s going on because he is there with open arms. The minute I sat in the chair waiting for him, he was already ‘don’t worry, we’re going to take care of everything.’ To hear that from a doctor, the first thing before he’s even sitting down and looking at your name, makes a difference.
And starting to come in for chemo, the staff and seeing their interactions with patients, it feels very homey. You don’t feel like you’re just a patient. You feel like you’re at home because you’re being treated with the care as well as other patients being there. Feeling you have some type of commonality because you both are battling the same type of cancer. Even though it’s a different type in the body, yet everyone in the same room is striving to beat it in some way.
Just the staff themselves, their demeanor, everything, makes you feel comfortable. As I said it’s like a second home. Sometimes when their demeanor is different and their attitude, people are scared to come back and they don’t like how they’re being treated. When I come in I enjoy it because they make you feel comfortable, even just small talks with them. That’s how it feels, not feeling dreadful. It’s different here. It’s a whole different setting- people who know how to treat you.