Patient Story: Proton Therapy for Brain Tumor with Lindsay Strauss

Tell me about your brain tumor diagnosis.

My name is Lindsay Strauss, I was diagnosed with a grade three astrocytoma brain tumor. I was 33 weeks pregnant. I was diagnosed back on January 25th, 2015. I had a four-and-a-half-minute grand mal seizure in my house after I had just spent the entire day at Mass General going through baby class. I went to a local hospital and they sent me back to Mass General. I thought I was coming to have a baby that night... but we weren’t having a baby, we were having a brain tumor. The plan all started to come into motion. The best doctors came out of the woodwork on a Sunday night, they ended up being my care team. There were two patients in my case, my daughter and myself and it was important to make sure they were going to take care of my baby, but also me. It was all kind of a scary start, but it was headed in the right direction.

Can you imagine having that four-minute seizure in a room full of other expecting parents? I was actually grateful that it happened in the comfort of our own home. There was a very big snowstorm going on, thank goodness the ambulance was able to get me from the North Shore back to MGH.

We knew that a baby was going to be a big life change, we had tried for a baby. Did I expect my life to completely change all at one time? No. I was working full time prior to my diagnosis but upon finding out that I had this brain tumor and I was going to need to have surgery, I had to make a big decision. We knew that my daughter was going to come four weeks after the initial seizure. And then I was going to have to have brain surgery four weeks after that. We're going to try to put 100% of our focus on being new parents and learning to be cancer patients at the same time. And I say we because when you have cancer it happens to everyone around you, too. It happens to your spouse, your kids, your parents, your siblings, your friends, anybody that you come in contact with. It’s just a big puzzle piece that has to get put together. I wanted to watch my daughter grow up, I wanted to see her graduate from kindergarten, I want to see her graduate from high school, I want to see her go to college, there were a lot of things that I decided that I wanted to do.

What became really important was the level of trust I put into the Mass General Cancer Center. All of the people that I was in contact with were aware of the situation; I'm a 33-year-old woman who was diagnosed with brain cancer, and I want to watch my child grow up, I want to spend the rest of my life with my husband. I want to do all those things I want to, you know, enjoy retirement with my husband, and I want to do all those things. Unfortunately I got a diagnosis at such a young age. But that's how my life changed. You just make it work. You have to be all-in, fully committed to trying to get better and trying to resolve this big problem that you now have. You know that there are a lot of people who are on your team. That's the biggest decision. Coming here you have the biggest team of doctors. I mean, I had a fertility doctor that I saw while I was trying to get pregnant, and he showed up in the Cancer Center one day while I was at the hospital, everyone is on your team.

Could you tell me a bit about your multidisciplinary care team?

My care team here is the best. It all started with my surgeon, because that was the biggest part, we had to respect the plumb size tumor that was in my brain. And Dr. Will Curry is a great surgeon, he did a great job. He spoke at Harvard the morning of my surgery and he was at the hospital for 11 hours after that. He was very informative to my family. Dr. Helen Shih was one of the first people I met here, Helen has been a big part of my care family. And I consider my doctors family at this point. [Dr. Shih] was the one that told me I had cancer. I just had brain surgery, you hope that everything is going to come out okay and that you're going to be able to walk and you're going to be able to do the things that you normally do. But she was the one that told me I had cancer. She knows everything, she's willing to talk to you, and I put my trust in her.

There are meetings that go on behind the scenes where every single doctor on the oncology team for brain tumors talks about you. There's a team of people who are on your side, and you have to trust that they know what they're doing, and that they're able to put into perspective your situation. You have to trust the plan, even though it's the scariest thing you will ever go through in your whole life. You have to put your trust in the level of care that you're being provided and that your doctors are available to you anytime.

This is a teaching hospital and they're willing to teach you about what you have and what is happening to you. My dad was very interested in proton radiation. Dr. Helen Shih took a great amount of time to walk my dad around the Proton Center and teach him what all the machines do so that he felt more comfortable. My dad was the one that drove me to treatment every day, he would come for treatment, he would sit in the waiting room and he would know what was going on behind the scenes because the doctors here are willing to take the time to educate you. [Your loved ones are] visually seeing the changes in me that I'm tired, I'm losing my hair, and they want to know exactly what is happening when I'm laying inside that tube, what’s happening to my brain.

What is the biggest piece of advice you would give to someone – or their loved one – going through cancer treatment?

My biggest advice to give someone who is about to go through cancer treatment, or whose family member is going through cancer treatment is to get yourself a notebook. Whenever I travel I buy a notebook. My notebook happens to be from Paris because it's one of my favorite places. But get yourself a notebook and either you bring it with you or have a family member or friend bring it with them. You make sure you have someone who you can really trust with you and never go to a doctor's appointment alone. My notebook is full of business cards, every time I meet a new doctor or physical therapist or a nurse or a nurse practitioner or someone who works in the Proton Center, their card is stapled in that book. And there are notes next to them so I can remember who I talked to that day and what we were talking about, and if I ever have a problem I know who I can get a hold of quickly. There was an instance where I needed to come back to the hospital, and we needed to get there quickly. My husband was able to call the nurse practitioner directly because we had their phone number, it was in my book neatly organized and they were able to get me through the emergency room more quickly than if I had just shown up off the street. That's my greatest gift, my greatest tool.

I also say it's normal to be afraid. But just know that you have put your trust in these people in the hospital. ‘Trust’ is my big word. You have to trust the process. Don't get frustrated by the process, even though it is frustrating. There are a lot of people here to support you. If you're having a bad day and you just want to talk your doctor, it's okay to just call. Dr. Shih’s admin knew my phone number because I would call and say ‘I'm not feeling good today. I don't know what's wrong. Can someone give me a call and just tell me if this is normal?’ I don't know what's normal, I've never been through cancer before. It's like having a baby, I didn't know what I was doing. Having a baby and having a brain tumor. ‘Is this normal that I can't smell today? Or ‘is it normal that I have a headache?'

It's always nice to see a familiar face here. I went through 33 rounds of proton radiation to the head, so that entails having a mask on. You're strapped to a table and they're moving the beam around your head. But the best part of that day was having my dad sitting outside the Proton Center smiling at me when I came out of that room. I really love to see family members and support teams there with patients. I think it's one of the most important things. Find your support. There are a lot of people that want to help you. They just don't know how to help you. Ask for help. Cancer is a big scary word, but it shouldn't be a big scary word. It should just be ‘I need help. I need dinner tonight. I need to not be afraid to say ‘I need’ or ‘please help me.’ I have a pretty big support system. I'm thankful that my parents dropped everything and moved to Boston. My sister is my biggest cheerleader. My husband is the rock that's holding everything together. I'm lucky to have that in my life. I know a lot of people aren't as lucky. But there is support here at the Cancer Center, even if you just need to see the same nurse every time you come out of that tube or every time you have an infusion.

Why did you choose Mass General Cancer Center for treatment?

I did my research because it was a brain tumor. Everyone has the right to do research. I grew up down South and there's also excellent health care there, but I chose Mass General because it is in my backyard, and I was getting prenatal care here and I had a great experience. Once I met my care team and I was able to understand what was happening to me and what I was doing, and the amount of effort I was going to need to put into my care, going someplace else didn't make sense for me. And I did meet a lot of people through my treatment, some who took trains here from Iowa because they can't fly. There are people who come here from all over the world, and I was lucky enough to be 30 minutes away. The level of care that I was being provided here is second to none, you can’t ask for better.

What do you think of when you hear the word “cancer”?

I think research when I hear the word cancer. I would not be cancer free without research. I have put myself forward and volunteered for a research study here at the hospital. I just completed my portion of it. But I know that funding and research is what is going to cure cancer, what is going to [allow doctors] to be able to better treat patients here at Mass General Cancer Center and around the world. Because of the research studies that are done here with patients like me who want to move forward with their lives and not be stuck.

Support is another word I think of when I hear the word cancer. No one has cancer alone, ever. You may feel alone, but you're not alone. People come to Mass General because they know that they are experts in their field, and they are trying to move their research forward, they're trying to make a difference and support you. Allowing these doctors to share their findings and their studies around the world is an amazing gift to give anyone, and to be able to allow people like me the opportunity to do that is incredible.

There are great things going on at Mass General every day. I'm really happy to be part of this family. I would send everyone here. We travel a lot and meet people and I always tell them I got treatment here at Mass General. I would recommend it to everyone. Come here, come check it out. Talk to the doctors and do your research. Make sure that you feel fully informed about what's going to happen. If you do get that cancer diagnosis and you want to move forward, what kind of life do you want to have after cancer? What kind of life do you want to have during cancer? You have a great team of people here supporting you.