18 – When a Proactive Cancer Screening Leads to a Surprising Diagnosis
February 26, 2024

After supporting her husband through his shocking cancer experience, Cindy decided to take a multi-cancer early detection test as recommended by her doctor. She was once again shocked when she received a “cancer signal detected” result, leading to a cancer diagnosis. Join us to hear about Cindy’s experience with early detection, treatment, and eventual remission, and what she learned along the way.

Transcription

Kim 00:08
Welcome to The Cancer SIGNAL, a podcast presented by GRAIL, where we discuss the impact of early cancer detection, the science behind multi-cancer early detection and insight into how this approach has the potential to shift the cancer paradigm. I’m your host Kim Thiboldeaux. Today we are joined by Cindy, who lives with her husband of 30 years, Carlos, in Southwest Ranches Florida. She has three children and two grandbabies. Cindy took a multi-cancer early detection test and after additional diagnostic testing was diagnosed with mantle cell lymphoma. This came not too long after Cindy’s husband, Carlos, navigated a cancer diagnosis as well. Today we are going to hear her story. Welcome, Cindy. Thanks for joining us today.

Cindy 00:53
Oh, thank you for having me.

Kim 00:55
Cindy, tell our listeners a little bit about you, about your family. Where do you live? Are you working? Are you retired? You know, what is your life like?

Cindy 01:02
Well, okay, um, I’ve been married for 30 years, as you mentioned, and I have three children and I have now three grandchildren and my daughter recently had another.

Kim 01:12
Oh, congrats. That’s great news.

Cindy 01:15
And I work with my husband. We have a marble and granite company in South Florida. We’re subcontractors of like the flooring and marble. And basically, that’s what, that’s what I do.

Kim 01:28
And do you like to do you guys like to get outside? You’re in that nice Florida weather? Do you like to be active outside? Or what do you guys like to do in your free time?

Cindy 01:35
Definitely. In our free time we have a farm in Alabama. So yeah, we like the outdoor, the farming. And, you know, we also like the beaches. Of course who’s not going to love it here in south Florida? But we like beaches and farming. That’s basically what we do in our free time.

Kim 01:51
Wow, that sounds like a great life, Cindy. You shared with us, Cindy, that your husband Carlos was diagnosed with cancer. Could you tell us when and how he was diagnosed? Was he having symptoms? What led to his diagnosis and what was his diagnosis?

Cindy 02:06
Well, his diagnosis was cancer in the back of the tongue driven by HPV, which is very common in men his age. And he just woke up one morning in February of 2022, woke up one morning with a lump in his neck. Long story short, after doing a biopsy, came back positive, we very quickly, I rushed to get him a couple of appointments with different doctors. We ended up getting treatment in Mayo Clinic in Minnesota. And they removed the tumor in the back of his tongue. He had an accelerated program, which involved with two chemo therapies and radiation in the target, around the target. He had surgery to remove his lymph nodes around his neck that were cancerous. And basically, that’s I mean, it was caught us by surprise. And we were able to tackle it very quickly. And by the end of June, we were done with treatments.

Kim 03:12
Wow. But I imagined it kind of turned things upside down. You said it was quite a surprise, a real impact to your family. Right?

Cindy 03:18
Yeah, it was a total surprise. And you know, the first time you hear the word cancer, you just freak out. So it was like it was just a very difficult moment for our family. And going through the process. It was really actually horrific. His surgery, you know, in the back of the tongue, you can just imagine how painful that was for him. And we just, you know, I stay positive, change his diet right away. And, you know, I’m trying to do the most research that I can, holistically how was I able to, you know, improve our, our lifestyle in order to get him through this journey.

Kim 03:56
And how is he today, Carlos?

Cindy 03:57
He’s actually doing great. He’s cancer free. And he’s doing wonderful. He’s really doing great. And we’re blessed to, you know, with all the time, you know, with everything that we went through, we’re blessed that he’s, that he’s negative right now. We’re very happy.

Kim 04:14
That’s great news. I’m so happy to hear it, Cindy. That’s great news. And please, please send him our best for sure. I want to turn to your story a little bit. But I want to start with some background. Does your family have any history of cancer or any known risk factors in your family?

Cindy 04:30
None at all. My, the only person in my family is my grandfather. He died at an old age. And he died with prostate cancer which is very common, I guess in men that are older. He died, I believe I don’t remember exactly. But he was very you know, he was older he was I think 78 or around 80 years old. And then you know it spread throughout his body, something normal, but there is no history in my family at young age or any other cancer, nothing at all. So, for me, it was just, it was a surprise.

Kim 05:03
Another surprise, right? May I ask how old you are Cindy?

Cindy 05:07
Well, I just turned 50.

Kim 05:09
Happy birthday and now three time grandma, congratulations on both of those things. That’s wonderful. And do you participate in your, you know, guideline recommended screenings, cancer screenings from your doctor? Mammogram and now of course, you know, colonoscopy where they move the screening age, you know, or have you been sort of diligent about those things in general?

Cindy 05:30
I have been in my life, not as probably not as often as the doctors recommend. But like, example might be, you know, mammograms, I would do it instead of every year, maybe every two or three years. And my colonoscopy, honestly, I had never had one done until now, you know. I would do as best as I can. I didn’t, I haven’t, you know, I’ve always been a very healthy person. So I didn’t feel the need to do anything else. But you know, regular Pap smear, just regular women’s check. But other than that, I never did any other checks.

Kim 06:05
Yeah, it’s not uncommon. It’s not uncommon. And so what led you to look into MCED, multi-cancer early detection testing? Was it related to Carlos’s diagnosis? How did you hear?

Cindy 06:16
It was. So when Carlos got diagnosed, I was very proactive in you know, researching different, different things that were out there in order to help him and, you know, to get an early diagnostic of anything that has to do with cancer, cancer cells in his body. So I discovered a doctor close here to my home in Boca Raton, Dr. Rosenberg, and I made an appointment right after he got diagnosed that he was, he was clear. And then I went to visit the doctor, and he spoke to me about the Galleri test. And I said, that sounds great. I think, you know, that’s something that I really want to do. So-

Kim 07:04
What was that like? Yeah, what was the testing experience like? How long did it take to get the results? Were you anxious? You know, tell us about that experience?

Cindy 07:11
Well, at first, when I first went to see the doctor, I wasn’t going to do it myself, which is, which is the whole craziness of the story. The doctor told us that it would take one to two weeks, approximately, to get the results. Easy. And my husband just turned to me and said, Why don’t you do the test? And I said, for you know, for what? I feel perfectly fine. And the doctor looks at me and says, Well, you know, we recommend at the age of 50. And my husband looks at the doctor says, Yes, she’s going to do it. So I did the test. And when I, when I got the results, I was just, I literally almost fell out of my chair. I said No, doctor, wait excuse me. Can you repeat that? I couldn’t. I couldn’t believe it.

Kim 07:54
Yeah, yeah. Yeah. So again, shocking. So he told you you had a positive cancer signal. What were the next steps from there in terms of diagnostic testing to determine the diagnosis?

Cindy 08:05
So I went to see a specialist, I went to see a hematologist because the test came out in my lymphoid lineage, which is hematology, which they were right on and the test was right on point. So at that moment, he advised me to go see a hematologist. So I went to see hematologist. I scheduled a biopsy. Oh actually, I’m sorry about that. Before that, I was a little bit in panic mode as you can imagine. So I, you know I asked that, I wanted to have a PET scan done. He didn’t want me to but I said I really want to have this done. I can’t sleep at night. I really need to just, get this done. So the PET scan came out with some lightage, you know, it’s it’s based on lightage, on my groin area. So after that, they scheduled my biopsy and then the biopsy came back and it came back positive for mantle cell.

Kim 09:44
And I understand Cindy, that your doctor had never seen such an early, such an early diagnosis of mantle cell lymphoma. Tell us about that. What did he recommend next? What was your treatment plan or what was the approach?

Cindy 09:07
Okay so the first biopsy that I did, I had to go to a specialist which, this is one of the interesting parts of the story. I had to go to a specialist here in South Florida, because it was so tiny, the, you know, the tumor was so tiny, that I had to go to a specialist that really focused on very small tumors to get to it. It was a very difficult position, very small. So that was the first step that I had to even find somebody that wanted to do this, this biopsy for me. Then I found them. Then when it, when it came back positive, I started doing research on doctors in the United States. And I came up with my doctor, Dr. Wang, which he’s one of the leaders of mantle cell lymphoma in the United States, if not in the world. Then when I went to go visit him with the, with the results, he was very intrigued by my story, and he wasn’t accepting patients at the time. But he was so intrigued with my story and he was willing to accept me, because my age, I was so young, and the way that I discovered it and how small the tumor was. So when I went to go see him, he wanted to do a biopsy there in the hospital as well. So they did a biopsy. They confirmed that the, that the results were positive. And he was, you know, it was something very, you know, strange to him. He actually told me I was very lucky and that I was one of his earliest detection patients that he had ever seen, you know, if not, in his whole entire career. That usually my type of mantle, my type of cancer, mantle cell, it’s not very typical to get early detection because it’s, you don’t have symptoms. So most of the time when people discover it, you, it’s, you have more symptoms. And then it’s not usually it’s not a good situation because it’s usually spread in your body. So I was very, I was very lucky. I got very relieved, getting very lucky.

Kim 11:25
So how are you today?

Cindy 11:27
Well, today I’m doing great. I’m actually, I’m on remission. So I have, yes, I got on remission September of 2023. So basically 10 months after treatment, which is amazing. I’m on remission now and one of the fantastic things about my, my story as well as I had like two, two really lucky things. One was the Galleri test, which I’m very grateful for. And number two was I was one of the first patients of mantle cell in the world to be treated without chemotherapy.

Kim 12:10
Wow. Wow. Amazing.

Cindy 12:14
That was another, that was another blessing I had.

Kim 12:15
Yeah what a milestone. Yeah. That’s, that’s incredible. That’s incredible. And Cindy, how did Carlos’s experience with cancer impact your own experience? It sounds like first of all, it kind of motivated you to get the test. And you seem like a very, you know, sort of educated consumer and researcher, but you had certainly had some practice through helping and supporting Carlos.

Cindy 12:33
Definitely, definitely. So actually, at first, my focus was really him during that time.

Kim 12:44
Grab a tissue. There you go. Yeah. It’s intense. You guys have been through an intense couple of years. Yeah, for sure. So I can, I can totally understand the emotion Cindy.

Cindy 12:56
You know, when I started talking about this story, I just.

Kim 12:57
I know.

Cindy 13:00
So my focus was him. During the whole journey, I was just focusing on how can I help him healthwise and doing things for him on a holistic side. And then, then it just turned to me. So it was very, it was like I was dealing with him and me at the same time. So I had to, you know, go through that. So the impact, I mean he was absolutely, I mean, my whole family was in shock. It wasn’t him, it was just absolutely in shock, everybody. And it was, it wasn’t, I was in shock as well, but I feel like it made me stronger going through my journey, because I had already gone through it with him. So mentally, I said to myself, Well, if he did it, and I was there to support him, and it can be done, then I’m going to do it myself. So it kind of gave me strength and it gave him strength to just pull it all together and just pull it through.

Kim 14:02
Yeah. And it sounds like certainly catching your cancer early really made an impact on the outcome and how things turned out.

Cindy 14:08
A huge impact, huge impact. That was, I mean, it was really a blessing. And I’m very grateful for the test. And I just recommend it to all my friends, all my family members. It could be a life saving, you know, decision that you make just by making simple blood test. So for me, it was a no brainer. And to all my friends and family, I tell them, it’s a no brainer, you need to get out and do this once a year and just get it done.

Kim 14:38
So that’s how you’re going forward. Really what you learned from this experience is what now you’re sharing with your friends and family, as they sort of maybe contemplate or think about going through this process?

Cindy 14:47
Exactly, exactly. I’ve had, I definitely tell everybody about the test, Galleri test. I tell everybody, and you know, very health conscious now, it’s just my life, it’s just I have a complete different life, different diet. I’ve been helping others go through this and including recommending them the Galleri test.

Kim 15:10
It’s wonderful how you’ve, you know, turned your own experience into a way to turn around and, and help others you know, in the world and your community. So that’s so wonderful. Cindy, I thank you so much for joining us on the show today, for sharing your story. You guys have been through a lot. Your family has been through a lot and I appreciate you coming on and being so brave, you know, to tell us about what you guys have been through and, and again, congratulations on your milestone birthday. And on the third grandbaby. I’m sure you’re gonna hold those grandbabies a little tighter these days, after everything-

Cindy 15:40
I sure do. I sure do.

Kim 15:45
Yeah. Thank you Cindy.

Cindy 15:45
Thank you so much for having me. Thank you.

Kim 15:48
This is The Cancer SIGNAL presented by GRAIL. I’m Kim Thiboldeaux. Please rate and review our podcast and be sure to subscribe to learn more about the impact of early cancer detection on future episodes.

 

Based on a clinical study of people ages 50 to 79 around 1% are expected to receive a cancer signal detected result, which includes predicted cancer signal origins. After diagnostic evaluation, around 40% of people are expected to have a confirmed cancer diagnosis.

The overall sensitivity in study participants with lymphoma was 56.3% (27.3% for stage I; 58.3% stage II; 71.7% stage III; 60.9% stage IV)

The Galleri test is prescription only. The Galleri test is recommended for use in adults with an elevated risk for cancer, such as those age 50 or older. It is not recommended for individuals who are pregnant, 21 years or younger, or undergoing active cancer treatment. Galleri should be used in addition to routine cancer screening. Galleri does not detect a signal for all cancers. False positive and false negative results do occur. For more information, including important safety information, please visit galleri.com.

Important Safety Information
The Galleri test is recommended for use in adults with an elevated risk for cancer, such as those aged 50 or older. The Galleri test does not detect all cancers and should be used in addition to routine cancer screening tests recommended by a healthcare provider. Galleri is intended to detect cancer signals and predict where in the body the cancer signal is located. Use of Galleri is not recommended in individuals who are pregnant, 21 years old or younger, or undergoing active cancer treatment. Results should be interpreted by a healthcare provider in the context of medical history, clinical signs and symptoms. A test result of “No Cancer Signal Detected” does not rule out cancer. A test result of “Cancer Signal Detected” requires confirmatory diagnostic evaluation by medically established procedures (e.g. imaging) to confirm cancer.

If cancer is not confirmed with further testing, it could mean that cancer is not present or testing was insufficient to detect cancer, including due to the cancer being located in a different part of the body. False-positive (a cancer signal detected when cancer is not present) and false-negative (a cancer signal not detected when cancer is present) test results do occur. Rx only.

Laboratory/Test Information
GRAIL’s clinical laboratory is certified under the Clinical Laboratory Improvement Amendments of 1988 (CLIA) and accredited by the College of American Pathologists (CAP). The Galleri test was developed, and its performance characteristics were determined by GRAIL. The Galleri test has not been cleared or approved by the Food and Drug Administration. GRAIL’s clinical laboratory is regulated under CLIA to perform high complexity testing. The Galleri test is intended for clinical purposes.