Episode 95: Marie Sander, Colorectal Cancer Awareness

Intro Voices  00:04

Where do I go? It only happened once. I think I was singled out. The phone calls began about one month ago. What is hazing? Something happened to me when I was younger. I'm worried about my safety. He said he was sorry. Can someone help me? Where can I get help? Can someone help me?   This is You Matter, a podcast for the NYU community developed by the Department of Campus Safety.  

Karen Ortman  00:36

Hi, everyone, and welcome back to You Matter, a podcast created to teach, inspire and motivate members of the NYU community who have been victimized in some form or fashion and to identify resources both on and off campus that can help. I am your host Karen Ortman, Associate Vice President of Campus Safety Operations at the Department of Campus Safety, and a retired law enforcement professional. Today, I welcome Murray sander. Murray was diagnosed with stage for colorectal cancer in September 2013. And today is in remission. Marie has become an advocate for colon cancer awareness and is here to share her story, from discovery to diagnosis and to recovery. And how cancer impacted her life. Marie, welcome to you matter.

Marie Sander  01:26

Thank you for having me.

Karen Ortman  01:27

My pleasure. Tell me about life as it existed for you prior to your diagnosis in September of 2013.

Marie Sander  01:40

Wow, it seems like such a long time ago already, but September 2013. Prior to that, I was a full time, mom, full time employee. So very busy working in new construction. My husband and I had moved back to New Jersey from North Carolina in 2001. I had my third baby, I was home taking care of the kids went back to work full time, which included weekends. So working every weekend from 2003 through 2013. My diagnosis so I was just busy life -school, kids...

Karen Ortman  02:31

how many kids?

Marie Sander  02:32

I have three children. Lauren is 26. Michelle is 23. And Jack is 20.

Karen Ortman  02:40

So at some point prior to your diagnosis in September 2013, you had symptoms, what were your symptoms and were they alarming to you in that you had concerns about a cancer diagnosis?

Marie Sander  03:00

Typically, that would be the course. But with me it was a little different. I had been treated for breast cancer in 2007. I don't know if I had mentioned that to you when we spoke earlier. But I had very early stage breast cancer in 2007. So I had a lumpectomy and radiation and then I was on the drug Tamoxifen for five years. So I had been followed by an oncologist for five years having my bloodwork done every three months. And I had just finished taking the Tamoxifen in 2013. The next appointment I had with him, he had just moved me to every six months from every three months. So I had blood work done and I was severely anemic. So my iron was almost completely depleted.

Karen Ortman  04:01

And what was that attributed to at that moment?

Marie Sander  04:05

We were baffled.  So initially, he said, Well, let's put you on iron supplements. So I took iron supplements for a few weeks, redid the blood tests, you know, when it comes to the female, and medicine, so many things that we experience are attributed to hormones or it's just you know, because you're a woman or it's that time of the month, you know, a lot of things are always put off because of other things. So, you know, we tried to figure out what the source of the you know, low iron was so the supplements worked and then when I stopped taking them, my iron went back down. So that's when He had me do a fecal test, you know, when you take a stool sample.

Karen Ortman  05:07

Now what prompted that?

Marie Sander  05:10

He said you could be bleeding somewhere. You could be losing blood internal, it could be a what's it called...a stomach...?

Karen Ortman  05:22

An ulcer?

Marie Sander  05:23

An ulcer, bleeding ulcer, it could be internal hemorrhoids could be, you know, any number of things. So, I guess he wanted to do that to rule out, you know, certain things. But it did come back positive. He said, Let's schedule you for a colonoscopy and an endoscopy. So, checking the insides from top and bottom to see if there was anything internal that, you know, would be alarming. So we scheduled the colonoscopy. It was September 9 2013. I made it through the prep. And my husband took me we went to a local GI. And all I remember is waking up, you know, I'm still fuzzy from the anesthesia. And my husband was with me. And the doctor - just the look on his face. I knew something wasn't right. And I don't remember everything because I was still fuzzy. And I just remember him saying -we found a mass  In your sigmoid colon, we couldn't even get the scope past it. It was almost obstructing - I'm going to refer you to - you know, back to your oncologist and you should probably get some scans and it you know, is most likely cancer.  How did you feel at that moment? I was shocked. I was pretty much in shock. Very upset. Still, when you're fuzzy out of anesthesia, it's just like, you're in a dream. And it's you know, it's not really happening. And you're trying to wake up. I remember. I mean, one of the first things I thought was oh, crap, you know, not again, since I had already gone through with the breast cancer and with the breast cancer, honestly,  I never thought that was going to be the end of me. I felt very positive about it. This time, I just had an internal, like doom and gloom feeling. And it was very unsettling. And I remember getting home and my sister calling me and asking me how it went. And I broke down crying and said it wasn't good.  And, you know, I have to go for more appointments. And her husband is a cardiothoracic surgeon, my brother-in-law, he reached out to my husband immediately, and said, You know, I'm here for you. If you want me to help out in any way, I'm willing to do that. If you want me to go away, just tell me to go away. And of course, we took his guidance and who pretty much led us forward from that point.

Karen Ortman  08:34

So when you heard that it was cancer? You were scared in a way that was different. 

Marie Sander  08:44

Yeah. 

Karen Ortman  08:45

When you found out you had breast cancer how did you cope with that?

Marie Sander  08:55

I internalize a lot. So I kind of tried to suppress it. My oldest was just going she we had just dropped her off at her freshman year in college at West Chester University. So it was hard. I felt like I had to be normal and be strong. And my husband and I had went to appointments, and we didn't tell them where we were going. We didn't tell them what was going on. I wanted to wait until we had a plan until we knew everything and what the plan was going to be so that when we sat down and talk to them, we could give them answers.

Karen Ortman  09:39

So at some point you developed a plan of action. And you did share the news with your kids?

Marie Sander  09:49

Yeah. 

Karen Ortman  09:50

So tell me about that.

Marie Sander  09:51

We did. I you know, under the recommendation of my brother-in-law, I immediately had an appointment With a colorectal surgeon and a liver surgeon because after I had CAT scans done, it showed that it had already spread to my liver. So I had five tumors in my liver, as well as the tumor in the sigmoid colon. So that was stage four, colorectal cancer. And if you ever look up the statistics for stage four, which I'm glad my doctors never talked about in the beginning, but, of course, at this point, I know all the statistics.

Karen Ortman  10:31

So they don't talk about that at the time of diagnosis.

Marie Sander  10:35

They do, some some do. But my doctors, we never really went there, they always had curative intent. And they just would say, you have a good chance of reaching the five year survival, that's a big deal is to reach for your five years with cancer, if you reach that point. That's a big deal. So they would just say, I just remember them saying, you know, there's been good success with, you know, I have a lot of patients that make it to five years. 

Karen Ortman  11:12

Did you believe in that moment that you were going to be the one who was going to make it?

Marie Sander  11:19

I never consciously thought that. But I never thought I wasn't. So that's one thing. Some people asked me, Did you ever, you know, I never thought I was going to die. So I just did whatever I needed to do, to get through it and move forward. And I think it was on autopilot for several years. Looking back, I just did what the doctors told me to do. And I, you know, my brother-in-law was very involved with my care. And I trust him with my life. He's amazing. So I had full faith and my team.

Karen Ortman  12:02

Got it. So tell me about the conversation with your kids.

Marie Sander  12:07

Well the first conversation, we drove to Westchester and took my daughter, oldest daughter to lunch.

Karen Ortman  12:14

Did she think anything was unusual about that?

Marie Sander  12:18

I think now looking back, she did. And looking back now I feel awful, because we basically dumped this news on her and left. I never thought about that. She's at a new school, she has a roommate who she doesn't know, she's, you know, alone. And we give her this information. And then we just, you know, hugged and went home.

Karen Ortman  12:50

Well, you had to tell her at some point.

Marie Sander  12:52

we had to tell her and we wanted to tell her in person. So, it you know, it worked out, she never really said it was awful of us to do that. But...

Karen Ortman  13:06

it's that mom guilt that we have about everything. 

Marie Sander  13:08

Oh it's with everything. But she was really great. And she was in school for athletic training. So she did have a lot of education with medical stuff. And she kind of understood a little bit, as we were talking about different things, you know, throughout the diagnosis and surgeries and treatments and stuff. So she was a good one to have. Able, you know, to be able to talk about those things. The other two were younger. So I remember sitting them on the bed in my bedroom, all four of us, my husband and I and the two kids and you know, just telling them in very simple terms so that they can understand. You know, they know what cancer is, and I had to say I have cancer in my you know, it was hard to tell them where it was For them to understand, but I did. I said I have to get you know, medicine that's gonna help kill the cancer, and then I will probably have surgery to remove the cancer. And hopefully it'll all be gone. You know, just very basic terms.

Karen Ortman  14:29

Were those painful conversations for you to have not only with your daughter at school, but you're younger two.

Marie Sander  14:35

It was because I wanted to break down and cry because it was hurting me. But I didn't want to cry in front of them because I didn't want them to worry, right? I didn't want them to be scared. I honestly can say after eight years and all the surgeries and treatments I've been through, that was harder than anything to do that, and I feel like that I didn't only have to do that with my kids, I felt with a lot of friends and family too. I had to keep that face.

Karen Ortman  15:09

Right. So Is it accurate to say that you have to not only be strong for yourself and what you're going through trying to, you know, battle this disease and be strong for everyone else for their comfort?

Marie Sander  15:32

Yeah. Yeah. I felt that and I believe that, I don't know if everybody has that, you know, feeling. And, you know, the one thing we say in the cancer world is, you know, just because you look good, doesn't mean you feel good. You know, I didn't lose all my hair. I didn't know. I lost a lot of weight. But but if you met me for the first time, you would never know that I was, you know, had 12 chemo treatments and three surgeries and, you know, couldn't feel my hands and feet. And so there's, there's a lot more to it.

Karen Ortman  16:13

So, talk a little bit about that, because there are people I have a very, very good friend of mine right now who has lung cancer. And on the outside, she looks perfectly healthy. But she's battling a horrendous disease. And she has to be reminded of that, you know, you are very sick, you have to take care of yourself. You have to get enough sleep, you know. I'm wondering how often that happens to other people who are diagnosed with cancer who are very, very ill on the inside, on the outside, they look fine. But can you speak to, in reality, what they're actually going through that you can't see when looking at them?

Marie Sander  17:10

Well, you can't see the constant nausea, you know, you can't see the neuropathy in your hands and your feet, sometimes very painful neuropathy.

Karen Ortman  17:24

Now, just explain what that means.

Marie Sander  17:27

neuropathy is nerve damage, that chemotherapy, certain chemo therapies can be worse than others. One of the drugs I had was called Oxaliplatin and that gives you cold sensitivity and neuropathy. So within 24 hours of getting the infusion, if you were to reach in the refrigerator and try to, you know, take out an egg - a boiled egg, it might feel like 100 razor blades, were piercing through your fingers. 

Karen Ortman  18:02

Oh, wow.

Marie Sander  18:02

So touching anything cold, drinking anything cold, it would feel like shards of glass going down your throat.

Karen Ortman  18:12

Now is that as a result of the treatment?

Marie Sander  18:15

The cold sensitivity was specifically from this one drug.

Karen Ortman  18:19

Okay. 

Marie Sander  18:21

So you had to be very, you know, careful, especially for the few days after you can't drink anything cold or even breath in cold air, if it was the winter time, if you took a deep breath on a cold winter day, your throat could spasm and close. So a lot of you know different things. And what I found over the years, too, is I like to say not all cancers are pink, you know, everybody thinks about cancer, and they almost immediately relate to breast cancer and a bald head and somebody being bald and vomiting, but that there's a lot more to just losing your hair and being sick.

Karen Ortman  19:07

It's such an important point to make too. And because it is a stigmatized subject, nobody likes to talk about cancer and its effects on a person. I think that's a really important conversation to have, you know, at least making others aware of what a loved one might be going through or a friend or anybody who has cancer that they might not otherwise think of, you know.

Marie Sander  19:33

Anxiety. I feel like not many people want to talk about the mental side of it. 

Karen Ortman  19:41

Agreed.

Marie Sander  19:41

You know, anxiety, PTSD, trauma, it's all in there.

Karen Ortman  19:50

So you've you've been diagnosed, you shared your diagnosis with your family, your children in particular You were diagnosed on September?

Marie Sander  20:06

Ninth. September Ninth was my colonoscopy. So that's my unofficial Diagnosis date.

Karen Ortman  20:13

So, talk to me about how life progressed from diagnosis. Everybody knows. And now, everyone's aware Marie has colon cancer. Stage four.

Marie Sander  20:31

You know, I had said earlier, I had seen a colorectal surgeon and liver surgeon immediately I then met with a new oncologist. Because in the back of my mind where I have pushed it, I thought, how can I be with an oncologist for five years? And I now have stage four colorectal cancer. How was that missed? How could that happen? 

Karen Ortman  21:02

And was that answered? 

Marie Sander  21:03

No. I pushed it way in the back. And I moved on to another oncologist. And I probably have to come back to that at some point because I need answers about that. So I met with a new oncologist and between the three of them and my brother in law, we decided to have surgery first. Have a colon resection surgery first. I had all my surgeries at Hahnemann University Hospital in Philadelphia, where my brother in law was chairman of the cardiothoracic division. I can't say enough about everyone at that hospital. from admitting to the nurses to everything they, I mean, everyone was just wonderful. And I had my guardian angels, my brother-in-law, his two associates, and, you know, his team looking after me. 

Karen Ortman  22:06

You're lucky. 

Marie Sander  22:07

I'm very lucky. And it makes me you know, think about all the people who don't have that, and who don't know how to advocate for themselves. And that's a big problem. But the surgery went well. And then there was talk about having a bag, a colostomy, or an ileostomy. And that's when they you know, reroute your plumbing to go to the outside. And thinking back to also I had no idea what that was. I had no idea having that conversation with the colorectal surgeon, I was floored thinking that could be a possibility after you know, having that surgery.

Karen Ortman  22:53

So you learned that as an option when you were getting treatment? Or that was after you had the surgery at Hahnemann?

Marie Sander  23:02

That was before the surgery that it was discussed that it might be a possibility to wake up and have that if he felt that he needed to do that during the surgery, and sometimes they do that so you can start chemotherapy, immediately. They don't have to wait for your insides to heal before you start your chemotherapy. So you can start it sooner. 

Karen Ortman  23:27

There's no healing necessary with a colostomy bag.

Marie Sander  23:34

Not as long. Okay, because that, you know, when they reconnect the colon, the one drug they wanted me to take, one of the side effects is it could inhibit healing, or even reverse healing. So there was a little concern about that. But before we went into the O.R, I did say to him, if there's any, chance of not doing it, like, please, I do not want to wake up with a bag, because I had thought about that quality of life. And just one more thing to deal with. And I always go back to thinking of the kids like, what are they going to think like, how am I going to do this? Like, I just, it is a lifesaver for many people. And I was very fortunate not to have to deal with that. So this was my first major surgery and you know, first 24 hours in the hospital were rough. I was in for five days, I needed a magnesium infusion I needed a potassium infusion and again that went through the arm with the IV like the iron and ugh...

Karen Ortman  24:51

There's no better way?

Marie Sander  24:53

No, I mean you get a port. I did have a port placed After you know, again, that was the next procedure, I had a it's called a power port and it's in the chest as a wire that runs to the heart and then to the jugular. And when they access the port, that's where they put the chemo. The chemo drugs are infused through your port so they can do other things through there as well. But yeah, the magnesium and the potassium in the arm, and that was very painful. Again, I you know, recovery was good. I started chemo a few weeks later, I didn't want any visitors in the hospital. I told my husband; I do not want anybody to come and see me. I didn't, especially the kids. Just my husband and my sister. My sister came.

Karen Ortman  25:56

How did your kids feel about that?

Marie Sander  25:58

I think they were okay. Again, my oldest was in school, the two younger ones. I don't think they really thought about it much. And I said, I don't want them to see me with wires that you know, it wasn't necessary in my head. I just felt it wasn't necessary. 

Karen Ortman  26:19

Okay. So you start chemo.

Marie Sander  26:26

I started chemo The plan was to do six cycles of chemo and then have liver surgery. And then do another six cycles.

Karen Ortman  26:40

And the liver surgery was to remove the cancer contained within?

Marie Sander  26:43

Yes, the liver was to do a liver resection they call it a portal vein embolization they needed to do what they do is one side of the liver’s kind of small, they want to make sure once they take out what they need to take out what they leave you with is going to be functional. So the portal vein embolization, cuts off the blood supply to the one side and goes to the other side to hypertrophy it make it bigger. So you have more liver so they were going to do that and then cut out what they could cut out. And I also had two tumors that were very close to one of the main arteries, so he was going to do what they call radio frequency ablation. They were going to ablate the two tumors. So I did the six cycles. I made it through I always say I had very manageable side effects. Nothing major I never got sick, I only had slight nausea. I see a local oncologist who recommended taking his supplements that he has and a certain you know diet and nutrition plan. And since I never did chemo without that, I don't know if that was what really helped me. But I did a lot of things to you know, try to help myself with side effects. So I managed pretty well. The first scan after those six cycles, though, showed that I had progression. So the chemo didn't work. Tumors grew...

Karen Ortman  28:33

In the colon?

Marie Sander  28:35

In the liver. the colon was now clear of cancer. So now the liver. Most medical teams will not do a colon resection first because once you have disease outside of the colon, it's managing that disease which becomes the focus and ultimately is what will be your demise whether it's in the liver, the lung, brain. So my team decided to do it first because they were afraid of obstructing. if I was on started the chemotherapy and then the tumor in the colon got large enough to obstruct then it would be an emergency surgery situation. So they decided to do the colon surgery first to avoid that. So I had progression. My liver surgeon said we need to do a liver biopsy to make sure that those tumors are from the colon cancer and not from the breast cancer. If they were from the breast cancer that would have been really, really bad. when Colon cancer metastases the first place it typically goes is the liver and He said if that's the case, that's good. That's okay. We can take care of that. So we had a liver biopsy it confirmed colon cancer metastases. So we switched up my drugs. I took a different cocktail, we did four cycles, and then scanned again. And I had good response. So my surgeon was ready to go for the surgery. And that was in May of 2014.

Karen Ortman  30:35

Wow. So a lot going on between September of 2013. and May of 2014. And all during this time. Did you ever talk to anybody about the mental health toll? 

Marie Sander  30:54

No. 

Karen Ortman  30:55

Would that have been helpful? Do you think? 

Marie Sander  30:57

Yes. I mean, I look at my eight years since my diagnosis, and I feel like it wasn't until about two, maybe two or three years ago that they really started talking more about the mental health aspect of it all. 2013 to about 2016. I was just on autopilot. I just wanted to get it done and not deal with anything else. But I started connecting with people online, who also had colorectal cancer, you know, there were groups out there that you could talk to people. So that really helped. And then I started meeting people in person, I started going to conferences and symposiums and learning.

Karen Ortman  31:56

And when was this? 

Marie Sander  31:57

This was in 2016.

Karen Ortman  31:59

Okay, so, after 2014 May of 2014 You had surgery?

Marie Sander  32:08

I did end up having it, Yes. My first liver resection surgery and the ablation that was May 13, I think it was in 2014. And that was a very rough surgery. Very large incision, you know, abdominal my Colon surgery was laparoscopic. So that was minimal, you know, minimal incision. The liver surgery was a incision from my sternum all the way down, like kind of following the ribcage all the way to the right side of my hip. So a good 15-17 inches. And they had to move a lot of stuff around in there. So it was very, very painful Recovery.  the first I'd say, you know, the first 48 hours are always the worst. But that first week was rough. And I had to do more chemo.

Karen Ortman  33:18

Right. So how soon after the surgery, did you start chemo?

Marie Sander  33:23

I'd say probably four to six weeks after.

Karen Ortman  33:28

And how difficult was that?

Marie Sander  33:30

It was harder. doing the chemo after surgery was very difficult. When I was just on the chemo, I never had a good appetite so after surgery, and then having the chemo on top of that. So that wasn't a big issue for me not being able to eat, not being able to maintain weight. And that's a problem for a lot of people too. It's not just the fact that you're losing weight, its you can't even maintain your weight. And you have no appetite. And there is a name for that. It's called cachexia. Yeah, I don't know how to say it. But there is actually a pharmaceutical company doing research on a drug that can specifically help for that. So I had a lot of trouble with that. I had to do eight more cycles after that surgery.

Karen Ortman  34:24

Eight more cycles of chemotherapy.

Marie Sander  34:27

Yeah. That was after the surgery. The good thing though, was that surgery was supposed to be two stages. He was going to take out what he could in the first surgery and then go back in six weeks later and take out my entire right lobe. But he said my post op scans showed no evidence of disease. So he said, We can do surgery anytime. We can. We just went with the The chemo, I didn't scan again until after I finished the chemo treatments. So at that point, we were on a three month schedule. We were going to do scans every three months. So that's what I did. And in May 2015, there was a new spot on my liver. That was my first recurrence. And there was also a spot that kind of had returned in my lung. There was a tiny spot in my lung at diagnosis, they did what's called a PET scan. And they did a full body PET scan, and they saw a tiny spot in the lung, which was like five millimeters. It was so small, and I guess it had gone away with chemo. But now that was back and that was at like seven millimeters. It was too small to biopsy. My liver surgeon who I absolutely adore was very aggressive, who I believe to this day is why I'm still here. said I could take that spot in the liver out. No problem. We'll do you know, another surgery. So I was scheduled to do another four cycles of chemo and then have a liver resection and lung resection at the same time, two surgeries on the same day. That happened that happened in October of 2015. So that was a rough one. Because I had complications. I was never scared. I was never frightened to go into surgery. I was always excited because I knew they're cutting it out. I wanted to go I'd be like let's get this going on. Let's do it. I had complications after that surgery, bleeding complication in the liver, they had to go back in three days later, and do a re-surgery on my liver. And I was in the hospital for 17 days. I don't remember anything at all from like the first 10 days. I don't know if that's mental block. I don't know if it was anesthesia. I don't know why. My husband said you were sitting up talking to me. You don't remember that? I said I don't remember that. And then I had one week of rehab. I had to go to acute rehab after that. And that was kind of scary. We didn't really talk about that. We didn't talk about what happened. My husband never wanted to talk about it. My doctors didn’t, surgeons never really talked about it. Unless they did and I don't remember. It wasn't until my second recurrence and my third fourth liver resection surgery, my liver surgeon was a little apprehensive. He was he was a little hesitant. He said we could just do ablation, he said I kind of had a hard time getting in there with your last surgery with your stomach. You have abdominal surgery, adhesions form, it's basically scar tissue on your insides. He said it took me a really long time to get through those adhesions. So I'm afraid of what it'll look like. And my husband was like, you’re not having surgery again. I'm thinking about what I guess he went through. with that second surgery, you know, worrying about me, but ultimately, my brother-in-law, again, was very, very involved. And he said, You got to cut it out. You got to get in there and you got to do it. And he said, Why don't we do this? If he gets in there and he can't do it. If he's finding it too difficult, then we can do an ablation Internally while he's already got you open so that was the plan. 

Karen Ortman  39:17

Is that what happened? 

Marie Sander  39:18

That's not what happened. He said it was easier than he thought it was going to be so he was able to get in there and cut out that recurrence.

Karen Ortman  39:28

So were there any further recurrences?

Marie Sander  39:34

Yes, there was one before that, which we just we did a biopsy and an ablation that was in 2017. And the biopsy was inconclusive. So what we think happened was that really was a new lesion on the liver and that's what showed up again in 2018. And that was the third or fourth liver surgery. And then...

Karen Ortman  40:06

How about since 2018?

Marie Sander  40:09

So that was April 2018. With that surgery, I had a nodule that formed near my incision, which we thought was scar tissue. But it turned out to be what they call tumor seeding. When I had one of my liver biopsies, when they put the needle in and they're withdrawing the needle, cancer cells were dropped. So it seeded in my, it was like on the surface of my abdominal wall, there is a very low risk of tumor seeding, even with surgery. So, again, I never really knew about it, talked about it. We were kind of very surprised about that. But that was November 2018. He went in and removed that nodule, which had already went into my muscle and the fat he had to remove skin and muscle and fascia. And the nodule and he actually took another piece of the liver just to make sure that there was nothing, you know, in the liver, which was negative. So that was good. So that was my last surgery. November 2018, I did have radiation in January 2019. My oncologist thought it might be a good idea to radiate the surface of the abdominal wall too. In case there were microscopic cells dropped or in the area. So they did that.

Karen Ortman  41:59

So how are you today?

Marie Sander  42:03

Today? I'm, good. Yeah, I actually have scans on Tuesday next week. So I'll start with what we call scan-xiety. That will probably kick in on Sunday. my first oncologist even though I left him was good enough to prescribe me with some anti-anxiety meds, which at different times I use more than others. But I always take one before scan day. 

Karen Ortman  42:38

So just going to any doctor provokes anxiety? 

Marie Sander  42:44

Yeah. It was. Let's say, it was really bad about two years ago. And I noticed it when I had my annual gynecology appointment.  I've been seeing my gynecologist for 20 years right. It's like, autopilot, right. And I was sitting in the in the exam room, and I just started sweating. I was like, even the bottoms of my feet were sweating. And at one point, I could hear his footsteps coming. And I heard his voice and my whole body just, I like couldn't breathe. And as I said, Oh my gosh, this is not good.

Karen Ortman  43:27

Does your gynecologist sort of help you through that?

Marie Sander  43:33

Again, I'm the type that like, you don't talk about it. I don't talk about it. You know, I got to, you know, grit my teeth and get through it. That's probably because that's the way my father was he never, you know, let it show but I did start talking about it to my primary care. And that's when I started. I took a half of the pill. It might have to take something before I start going to a doctor's appointment. I mean, I knew I needed to take it for scan day. I did have panic attacks inside the MRI machine at one point. So I knew I needed something for that. But even just going to the dentist. So it depends now it just depends. I don't know sometimes I'm okay. Sometimes I'm not. Like next on Tuesday, I'm thinking can I do this without taking something? And I would like to try.

Karen Ortman  44:40

Let me ask you a question. Is there a difference between colon cancer and colorectal cancer?

Marie Sander  44:49

Well, colon is different than rectal.  They're different cancers and they're treated differently. In the advocacy world, I think it's just easier to say colorectal. So it encompasses both. But they are different cancers, colon and rectal.

Karen Ortman  45:19

So colorectal, which sounds as if it's combining the two. 

Marie Sander  45:26

Yep. 

Karen Ortman  45:27

Is not accurate. It's really colon and rectal.

Marie Sander  45:33

It's colon and rectal. So technically, probably not. But I like where my tumor was very low in the sigmoid colon, which is very close to the rectum. So sometimes they do put it together because it's very close.

Karen Ortman  45:55

So is that what your cancer was called by your medical professionals?

Marie Sander  46:01

I've seen, you know, looking at my reports, I've seen it written both ways. I've seen it as rectal. I've seen it as colon and colorectal. I think the colorectal is interchangeable with the other two. But if you have rectal cancer, it's rectal cancer. 

Karen Ortman  46:23

Got it. 

Marie Sander  46:24

Yeah.

Karen Ortman  46:25

Okay. Do you find that the perception is that men get colon cancer and women do not?

Marie Sander  46:37

Oh, absolutely. I feel even, you know, past generations, it was an old man's disease. And I can honestly say it's not. It's not an old man's disease. It's not an old person's disease. Not especially today -  there are young people who are getting colorectal cancer. Teenagers. We just had a little boy 13 years old who passed away. 

Karen Ortman  47:15

Wow.

Marie Sander  47:15

A few a few months ago. women during pregnancy, having symptoms being brushed off saying it's just a your pregnancy, you're feeling you know...

Karen Ortman  47:30

Yeah. So women really do have to be their own advocate. I mean, we have these conversations all the time. And I'm sure every profession out there where women are together talking. 

Marie Sander  47:42

Yes. 

Karen Ortman  47:43

And this is definitely one of those cases where one must advocate for themselves. 

Marie Sander  47:53

yes, that's the one thing I've learned through the groups that I belong to is self-advocacy, you know, but nobody else is gonna be your best advocate except you. And doctors are not God. They are not God. And they are not all created equal. Not all hospitals are created equal. We have a funny little meme. We say dear doctors, comma, it's not a hemorrhoid exclamation point. And I'm not too young exclamation point. Because they always say even when I was with the breast cancer, Oh, you're too young. It's probably nothing. You know when I was going for the biopsy. No, it's probably 99% of the time It's nothing.

Karen Ortman  48:40

And there are people out there that want to hear exactly that from a professional, a medical professional. So that's just the perfect response for them to say, okay, I'm good. 

Marie Sander  48:52

Yeah, yeah. 

Karen Ortman  48:54

And we can't have that.

Marie Sander  48:54

We have to push for it. My daughter was 22 last year. And she had been having some GI issues. And I said, Well, we're going to a GI doc. And thankfully, I didn't have to push for the colonoscopy because most would never even think of suggesting that for a 22 year old. But based on my history, he said let's do a colonoscopy.  And all is well? All is well with her. Yeah.  But never too young. That's what we call it say never too young.

Karen Ortman  49:32

Is there anything that we haven't talked about today that you think is important to share Prior to ending our discussion?

Marie Sander  49:42

I'd like to share some of the online groups that I've been involved with. Colon Town is a private Facebook group for colorectal cancer patients and caregivers. so it's for both. That's colontown.org. And there's over 100 neighborhoods, thats what we call it, there’s neighborhoods and colon town. And they're geared specifically towards diagnosis. If they are stage one, stage two, stage three, stage four, or it could be the caregiver’s group or the tough chicks which is for women only. The poker club is for men only. A lot of options. A lot of options, over 100 groups, like I said, and local crews, we call them i admin Jersey strong. So it's for people who are from New Jersey. And it's worldwide. So Facebook world wide. So we have over 6000 members from around the world that people connect, and they talk and we've saved lives, we educate we give. We have a second opinion project. We have some, you know, money funds that are available for people who want to get a second opinion but might not be able to afford to travel or things like that. That was one other thing I was going to mention is get a second opinion. Get a third opinion, get a fourth opinion, keep going until you feel in your gut that what you're hearing is the right thing. We always have to make sure your team is on the same page as you are. I have someone who I've been mentoring or helping and they were at a local hospital. And I asked them I said Ask the oncologist what her goal is with chemotherapy. And make sure you have that same goal. And they went back and asked and she said oh well, this is just palliative, meaning We're just going to give you chemo until you die. 

Karen Ortman  52:03

Hmm!

Marie Sander  52:05

I said you need to go somewhere else. 

Karen Ortman  52:06

Yeah. Oh, yeah. 

Marie Sander  52:07

So cancer.gov has a link that will list all the NCI National Cancer Institute designated facilities. So I always recommend getting at least one opinion from an NCI center. We only have one in New Jersey, which is the Rutgers Cancer Institute. We're blessed that we're close to New York City and Philadelphia, where we have Sloan Kettering and Fox Chase and UPenn and Jefferson, Johns Hopkins, there's you know, a lot of places but I do always tell people to look for an NCI. fightcolorectalcancer.org is a wonderful group. They have a lot of advocacy and awareness. And they do a lot for legislation. They were very instrumental in lowering the screening age to 45. 

Karen Ortman  53:18

Yeah, I actually just saw that. 

Marie Sander  53:20

yeah, up until a few months ago, it was recommended at age 50. With average risk, that's when you have your first colonoscopy. It is now recommended at age 45. 

Karen Ortman  53:36

that's good. 

Marie Sander  53:36

If that were the case, 10 years ago, I may not have had to go through what I went through. Because I was diagnosed at 48. So if I had my colonoscopy at 45. You know, who knows?  And then one more, manuptocancer.com. And that's wonderful. a friend I met in 2019 Trevor Maxwell, he is a stage four colorectal cancer patient and survivor and he started ManUpToCancer for men who are dealing with cancer or any type of cancer. Men tend to close themselves off and go in a cave. But it's not healthy to do that. So he's trying to get them to come out and talk about their feelings and have support. So that's another great one.

Karen Ortman  54:42

All great resources. Thank you so much for sharing.

Marie Sander  54:47

One more. 

Karen Ortman  54:47

Yeah. 

Marie Sander  54:47

Clinicaltrials.gov. That's one thing we didn't talk about was clinical trials.  there's a lot of misconception about clinical trials. 

Karen Ortman  54:56

How does one get involved in a clinical trial? 

Marie Sander  54:58

The best way is I mean, your oncologist or your doctor, probably doesn't have enough time to do a lot of research. So they may only know what's available at their hospital. So I do encourage people to do their own research, clinical trials.gov is a website that you plug your diagnosis in, and it'll come up with a list of trials that are available. Don't wait until it's your last chance, you know, you've gone through all standard of care. And then, you know, do it early on. And there's companies, I believe Trial Objectory is one. there are companies that will help you do it, to find the trials. So you can ask your doctor.

Karen Ortman  55:53

Okay. Well, I think that you are an inspiration. I think you're going to help a lot of people. And I thank you from the bottom of my heart for coming and talking to me today. Thank you.

Marie Sander  56:06

Thank you for having me.

Karen Ortman  56:08

My honor. Really, it is. Thank you. So thank you to my guest, Marie and to all of our listeners for joining us for today's episode of You Matter if any information presented was triggering or disturbing, please feel free to contact the Wellness Exchange at 212-443-9999 or NYU's Department of Campus Safety and their Victim Services Unit at 212-998-2222. Please share, like, and subscribe to You Matter on Apple Podcasts, Google Podcasts, Spotify, Stitcher, or Tune in.