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The Positive Gene Podcast-Season 2, Episode 1: Lynch Syndrome Awareness: Advocacy and Empowerment with FORCE Board of Directors President, Wenora Johnson


(Links mentioned in the episode are located at the bottom of the page)



 

Welcome back to the Positive Gene podcast.  I am thrilled to kick off season two with an incredibly special episode. Today we are not just exploring the hereditary cancer landscape, we are going into the heart of advocacy, awareness, and personal triumph in the face of genetic predispositions.


And today as we observe Lynch Syndrome Awareness Day, we are joined by a remarkable guest whose life story and work is nothing short of inspirational.


I have Wenora Johnson, the president of the FORCE board of directors joining us today. She is not only a three-time cancer survivor, but a fierce advocate for those living with hereditary cancer Syndromes like Lynch Syndrome. And instead of being daunted, she transformed her experience by dedicating her life to supporting individuals facing similar battles through her work with FORCE.


Wenora's story is a testament to the power of knowledge, the strength of community, and the undying spirit of those who refuse to be defined by their genetic makeup.


Welcome Wenora.


WENORA:

Thank you, Sara.  What a wonderful introduction.  I'm like, wow, is that me?


Well, listen, there's also one other thing I'd love to share with those out there who are listening as well, because for me, it's just a little story about how I got my name.


So, my first name is Wenora, and the funny part about it, it was an accidental name.  So it should have been, according to my mom, Winona, which is Native American for first born. And the funny part about that, I am the first born, but what's interesting is that for years growing up, I remember my mom telling me, you know, we have part Native American in us.  We were part Native American.


The funny part about that is, is after having genetic tests done, you find that you're 0% Native American, but 20% Irish.  And so that's been an interesting journey in itself.


But I actually say that to say how easily misconstrued stories get told in families about illnesses, about not talking about illnesses, or things of that nature, because what she should have really shared with me is that my grandfather had colorectal cancer at the age of 38 and passed away from it.


And so that to me would have been pivotal and important point in my life to share with me.  


SARA:

The family history piece for us, medical background and that sort of thing, I think there's this generational difference about not sharing details.  I shared this on a previous podcast that my maternal grandmother had, quote, a female cancer sometime in her 40s.  And this was one of those details that just did not get cascaded down to me until I reached out to my aunt, who's the remaining sibling on my mother's side, you know, and said, “I'm going to go get this genetic testing.  What do I need to know?”


And she's like, “Oh, didn't you know that grandma had a female cancer?”  And I said, “well, which kind was it?  You know, an endometrial or ovarian?


She's like, “I really don't know. They really didn't talk about it.”


So you're right.  It’s not comfortable for people to talk about. I hope that we're doing a better job, like as a society today, having these conversations, but it is difficult.


WENORA:

Absolutely.  Or just as parents, because you know what, Sara, I found that as a parent and especially being in the matriarch of the family and not wanting family members to worry about you, you develop that same habit.  Like, ‘don't worry about it.  I got it.  It's a cancer. Don't worry about it.’


And in essence, they do need to worry about it.  You know, they are part of that lineage that are affected by it.




SARA:

Let's jump into the Lynch Syndrome awareness or the Lynch Syndrome Day. Not just awareness within our families, but also in the greater community.  


Can you share with me the significance of this day for you and again to the broader hereditary cancer community?


WENORA:

Well Sara, for me, it's it's just very personal because multiple family members in my family have passed away from this disease and my children and grandchildren have a 50 percent chance of inheriting Lynch Syndrome as well.


You know, people and their families who know they have Lynch Syndrome can be offered a surveillance program to receive regular colonoscopies, which can reduce their chance of dying from colorectal cancer by more than 70 percent.  It can also reduce the risk of recurrence.


All information I wish my brother would have known about as he passed away from metastatic colorectal cancer in October of 2022.


Now while he wasn't genetically tested, based on my own observations and what I've gone through, I'm pretty sure he probably had Lynch Syndrome as well.


SARA:

So in your advocacy work, what is the sense that you're finding when you tell people who are maybe not part of that broader hereditary cancer community that you have Lynch Syndrome?  Do you get a "what's that" or "I've never heard of it”…what are you hearing out there?


WENORA:

Well, the great thing is, is that it's more prevalent and more, I guess I want to say in your face now than it was years ago.  And I'm going to say as many as three to four years ago, you know, most conferences I attended and Lynch Syndrome was discussed.  Many did not know, but I liked what I saw.  There were interested scientists, researchers, oncologists attending these conferences who wanted to know more about Lynch Syndrome and the impact it would have on their patients and scientists, their research.


And so I'm so happy that Lynch Syndrome is having its own little namesake and coming to be well known at this time.


SARA:

Probably making an assumption here that folks that are listening to the podcast, while I talk about living with hereditary cancer risk, Lynch Syndrome affects me personally as well because I have the MSH6 mutation.  I also have a second genetic mutation called CHEK2, which puts me at risk for breast and a little bit increased risk for colon as well.


But since we're on the topic of Lynch Syndrome, and if you're not familiar with it, for the folks that are listening, it refers to genetic mutations in certain genes that increase our risk for colon, uterine, ovarian, pancreatic, and other cancers.


The gene mutations associated with Lynch are lots of numbers and letters combined together, but I just mentioned my own, which is MSH6.  There's MLH1, MSH2, PMS2, and EPCAM.


What I find really interesting - It is among the most common hereditary cancer Syndromes.  About one in every 300-ish have it, but only 5% to 10% of people are aware of it.

WENORA:

That's pretty accurate, Sara, and that's the sad part.  But yet on the other hand, it gives us, people like you and I, an opportunity or platform to yell and shout from the top of our lungs, like, Hey, this is a genetic predisposition that needs to be known…just because you have it doesn't mean that you succumb to this lifetime of thinking I'm going to have all these different cancers.


There's surveillance.  That's pretty much become my new norm.


And so knowledge is power, and we're hoping that this podcast can bring knowledge to individuals who want to know more about Lynch Syndrome.


SARA:

Your knowledge of Lynch Syndrome will have an impact, should you ever have cancer, on your treatment.


WENORA:

Absolutely.  And since we were sharing our numbers, mine's is MSH2.  And so I had a little bit of TP53 thrown in there, too, which just kind of makes it a little bit more aggressive.  So when it kicks into gear, it gets really kind of aggressive.


And so those are important things to know, things to, like I say, we want to pass down to our children and our grandchildren.


SARA:

This is a good time for you to discuss your personal journey as a three-time cancer survivor and somebody living with Lynch Syndrome.  Walk us through your initial diagnosis and then how you came to learn about your genetic predisposition.


WENORA:

Absolutely.  So it all began, believe it or not, with a simple fit test that my primary care physician asked me to do with my yearly exam.  And for me, it was yearly.  I never missed a year not having a yearly exam.


But this time, like I said, he wanted me to do something a little bit different, asking me to take this fit test.And because I thought I was so healthy, I kind of set the fit test on the back of the toilet for about two weeks.


And that's when a nurse practitioner called me up and asked me, "Wenora, could you just please turn it in?”  And I'm like, "Why am I being so hard hit about this?  Turn it in."


Well, those findings from that fit test led to a scheduled colonoscopy, which then in turn led to what was supposed to be a minor surgery.  And waking up from surgery, I'm being told that I had stage 3B colorectal cancer.


So I guess I wasn't shocked that I had cancer, but I was more shocked at the fact that I had had it in my body for 15 years.  And so at that time, that was 2011, I was 44, I'm going to say, and a half years old.  And when she mentioned 15 years and I did the subtraction, I'm like, "I should have been tested when I was 30 years old."


And that's the missing component.  And that's what's important that people need to know.  The sooner you know this diagnosis, the sooner you can be tested and put on a regular regimen of just being watched.  And this follows a standard care treatment that I received.


And for four and a half years, I thought I was cancer free or no evidence of disease or what we'd like to call “Ned."  And my oncologist suspected that I might be Lynch Syndrome.  I knew nothing what Lynch Syndrome was at that time.  And yet she suspected it.


And it's only because I came back to her saying, "Hey, my brother was just diagnosed with late stage colorectal cancer.”  And she was like, "That's it. We need to have you genetically tested."


And so I did. I had that genetic test done and it came back positive for Lynch Syndrome.  And I'm just thankful that she pushed me to go ahead and do that because the genetic test stated that I had a 60% chance of getting endometrial cancer.


And so I finally felt that it was an opportunity for me to be proactive about my health and step up.  And so I opted for a complete hysterectomy and that was done successfully.  Of course, when I did a biopsy, guess what was there already? - Stage 1A endometrial cancer.


So while I thought I was home free after this near miss in 2016 and 2017, I went to the dermatologist for what I thought was just a simple pimple on my backside, really small, but it started to really irritate me.  And so I was starting to really understand a little bit about Lynch Syndrome now, understanding that I could just have different forms of random cancer pop up.


And when I mentioned this to my dermatologist, she was like, "Oh, no, Wenora.  It's probably just a sack of oil cells.  We're going to remove it and everything is going to be okay."


Well, when she started removing it in her office there, she removed about two inches of basal cell carcinoma out of my backside.


This is when I really took the seriousness of Lynch Syndrome and it kicked into high gear for me in my advocacy work, focusing and changing introductory of what I was doing previously in my patient advocacy work from policy and research to the importance of genetic testing and clinical trials.


SARA:

Wow.  Well, one thing that really stands out to me is you were in this routine of regular screenings for your annual physical and then obviously those cascaded into other things, but seeing your dermatologist every year, now you probably see your gastro every year.  Your medical team gets to be...


WENORA:

I see a lot of people every year, if not every six months, actually, for me.


SARA:

Absolutely.  Sometimes I think, especially when you don't live at home, I'm seeing my medical team more than I'm seeing my relatives that live in other parts of the country.


WENORA:

I think that's what's of fear for some people is that, is it the more that I see my physicians?  Does that mean that something's wrong with me?


No.


It wasn't until another physician brought to my attention, he says, "I'm jealous.  You get a regular routine of surveillance that if anything pops up, you will know probably before we do because you're in your medical chart before we are."


SARA:

For somebody who has, and I almost want to say had, health anxiety, I think there's elements of me that still does.  When I told my friends I was doing the genetic testing, they're like, "Oh, goodness. Are you sure you really want to do this?   But having a process, a very well-defined screening process and knowing that I am staying on top of it actually has brought me so much more peace to my experience.


WENORA:

It's been my therapy, actually.  It's going to give you one or two things, either good news, "Yay, it's okay.


Like yesterday I did my mammogram test.  I'm like, “Okay. It's going to tell me one or two things that there's something there or there's not something there."


Either way, we have to start looking at it differently that I'm thankful that I have the opportunity to be told so that if something is there that I can address it and right away just knock it out.


SARA:

100%.  Again, another theme I'm hearing from you is self-management, health empowerment. Part of your advocacy, you talk a lot about this. You're very passionate about it. I love the excitement that you're putting behind it to just really take that fear and worry away from folks to say, "You know what?  It's okay.” Take us through that experience.


WENORA:

Yeah.  I mean, in a sense, Sara, it sets up hope really.  It's an opportunity to hope that better treatments are going to come your way that you don't have to worry about this.


This doesn't have to constantly be something that sits in the back of your mind and you're anxious about it.


Frankly, I'm doing all the leg work and footwork now because I don't want my children or grandchildren to have to worry about this.  I want everything to be in place for them so that when the time comes, if it has to go that route for them, there's everything that they need here.


All the knowledge and everything that I've put forth is there and ready for them to use.  


SARA:

I love that.  I mean, that's huge. As a mom, to think that proactively is not just for our experience and those in the current community, but really thinking about our children's future is really, really profound.


Thank you for that.


Now, you've taken your experience, you've turned it into a platform for advocacy and support through your role at FORCE.  Before we talk about what motivated you to get involved, I mean, the president of FORCE Board of Directors, let's talk about how you got there.


WENORA:

Well, you know what?  I'm going to go a little bit into my story.  It's been about 10 years now that I've been this PPE I call passionate patient advocate, and I absolutely love it.


I can't wait until really honestly of the day that I retire in the next couple of years where I can really focus on where organizations need the most help and embedding my voice and being there. I'm really looking forward to that.


But my story actually kind of begins in 2014 where I was just Googling and searching the internet really about colorectal cancer. I came across this organization whose simple ask was to share your story, and that's what I did.  And from there, I was like, "Oh, this is nice."


And they had this training program that put me in places like laboratories and on Capitol Hill, helping me understand the benefits of science, research, and policy surrounding cancer and cancer survivorship.


And then four to five years later out, I met this wonderful...Oh, I saw, listen to this, this wonderful organization called FORCE, Facing Our Risk of Cancer Empowered online.


And I was like, "Oh, they're talking about genetics and they've got all these good things going on.” But believe it or not, Sara, I kind of like stalked them online.


I was sending an email to like, "Can I come to your conference? And I want to come for free.  And by the way, I have Lynch Syndrome.  I know you don't talk about Lynch Syndrome right now because you're doing the breast cancer and ovarian cancer stuff. But I just want to be in the presence.”


And there like, "Not quite right now."


And then I was like, "Okay."


And then following year, I'd ask again.


And then one day I got an email that said, "Hey, Wenora, we're doing some changes in our program and we're going to revamp, remark it, and we're going to start to include Lynch Syndrome."


I was like, “What? Really?”  And so the simple ask from them at that time was, "Would you like to be a research advocate?  And by the way, we also have the Peer Navigator program that we're doing and implementing as well since we're getting these calls and emails about people with Lynch Syndrome.”


I said, “Absolutely."  And so I actually began being a Peer Navigator and a research advocate.  So whenever there were opportunities where a research advocate was needed to provide a voice about Lynch Syndrome and talk about it a little bit more, I was that person raising my hand, "I'll go.  I'll do it.  I'll talk."


And then that then led to an opportunity where they "Would you like to be on the board?” And I was like, “Absolutely.  Absolutely I would."


I thought it was just such an honor to go from, this is why it's so important to not give up on something because after they said no, maybe the first time I could have been dissuaded and said, "I'm going to walk away.”  I'm like, “Well,I'll find another organization."


And I believed so much in what they were saying and doing that I just stayed in pursuit. And they really just changed my patient advocacy work. And when I was asked to step up as president, I was like, "Am I ready for this? You mean really me?"


So you know how when someone's talking to you and they ask you something and you look at them all like, "They're not talking to me, right?"


That's a big, big thing, but I was just so honored that they thought a person like myself could do this job and their belief in me, the staff, the team, all of them.


It's just been so rewarding.


And so for me, it reminds me of one of my favorite absolute all-time quotes I've probably been quoting all over the place and quoting the deaf people who've been interviewing me. But it is my favorite this year.


And that's why James Baldwin, it states, "Not everything that is faced can be changed, but nothing can be changed until it's face."


And that's what FORCE did for me. It's helped me face my cancer fears and share them with my family.  And I wanted to share that with others.


SARA:

Oh, goodness.  I love that.  And that quote is amazing, not just in terms of people's hereditary health history, but even just in life in general, right?


Facing things head on and...


WENORA:

Facing those fears.  And that facing them, we can't change everything, but at some point, it'll change something.  And it changed my mindset.


It changed. It was, again, as I mentioned, it was therapy.


SARA:

So where do you find yourself with the work that you're doing with FORCE?  I'm assuming I'll see you at the conference.


WENORA:

Absolutely.  We'll be there.


SARA:

But what are other ways that people find you in your recent work with FORCE?


WENORA:

Oh, well, you know what?  Opportunities like this, Sara, when I'm asked by individuals like yourself to, "Hey, tell me about your story. Talk to me about Lynch Syndrome.” I jump on those platforms. They are just so important because it's not just about telling my stories, but I want people of color to understand that there are other people of color out there yelling from the rooftop too, that you can speak up and become your own advocate.


And even if you don't feel strong enough to do so, there are others out there that can help you and get you, how can I say, aligned with the right organization to help you through this journey.


SARA:

Yeah, absolutely.  So now we've spoken about Lynch Syndrome in general.  We've talked about the advocacy work and resources like FORCE.


Let's talk about understanding Lynch in terms of preventative measures. So talking about things that we can't control, right?  It comes with high risk for various cancers as we talked about what are some preventative measures.  And we talked a little bit about your screening protocols that you follow, but maybe you can summarize them for us.


And then how you sort of balance vigilance with living a full life.


So talking through screening protocols, preventative care, and then just that balance.  So take us through your experience.


WENORA:

Well, Sara, I'm going to tell you this.


Three times - Surveillance. Surveillance. And more surveillance.


So for me, this means following up with my healthcare providers faithfully.


And those healthcare providers include my primary care physician, my GI doctor, my oncologist, my dermatologist, my gynecologist, my cardiologist.  And believe it or not, sometimes we think about all the “ologists”, but the dentists sharing the fact that you have cancer with your dentist is important because sometimes they may notice things going on in our bodies because they're directly in our mouths or so what. And it's so important that they be informed as well.


And so this is my regular regimen turnover.  Every six months I'm visiting one of these particular doctors.  And I used to think like, Oh, guys, this is a pain. I got to go in here and make my appointments.


But now I look at it as this is this is my new norm.  This is this is my ticket for survivorship.  And if it means going a little bit extra, then that's what I'll that's exactly what I'll do.


And in addition to that, Sara, do you know what?  Every last one of them are on the same page with me.  And their goal is to keep me alive until there's a better treatment option to treat Lynch Syndrome.


So that's why I don't complain.


SARA:

Yeah, that's awesome.  You mentioned you were involved in a clinical trial. Is this an okay platform to talk about it?


WENORA:

It absolutely is.  And it's it's it's it's one of those that can lead to a couple of things here.


We talk about diversity and inclusiveness sin and people of color who are afraid to be involved with clinical trials.


But a couple of years ago, as I mentioned, when I realized how significant Lynch Syndrome is impacting my life and maybe the future of my children and grandchildren, I understood it had to be more than just a genetic testing to help them. If there was some kind of clinical trial that could help them and that I was more than happy to participate in that.


So there wasn't anything out there a couple of years ago that was happening other than just studies, studies about exercise. Studies about your food intake.


And so last year, the FORCE website is wonderful - We’ll talk about that in a few minutes here about what they offer - They put up there at the clinical trial for vaccine for Lynch Syndrome.


And since here I am, I'm a more seasoned patient advocate, though.  So I'm understanding who a PI is, a principal investigator, and and who's going to be to doing the study, how to kind of navigate clinicaltrials.gov.


And so I'm just directly emailing the PI and saying, hey, I want to be a part of this clinical trial.And in fact, I think it's so important that if I'm not selected, I would love to just be a part of the process of this study. I will, you know, I can assist you with just having the patient's voice in this study.


And so, you know, thankfully I was able to get in this study.  And what I'm most excited about is that having a Lynch Syndrome vaccine that could help prevent cancers before they even begin in the body is not just imperative and important for Lynch Syndrome, but how about for any cancer?  This has huge, huge, you know, implications across the board.  And that's what I'm excited about.


So again, I'm taking a personal here because this means that my family, my grandchildren, my daughters won't have to have these cancers that I've experienced in my lifetime.  Again, looking out for them.


SARA:

So what are other recommendations that you make to your family in terms of preventative care, lifestyle, those sort of things?


WENORA:

You know, this is great here because I used to think I'm this great mom.  I'm worried about everything, but sometimes the most important thing, like, believe it or not, something as simple as using a bathroom on a regular basis.


That was one of my first red flags for my particular Lynch Syndrome where colorectal cancer is significantly higher.  For me, regular bathroom habits were like once a week, once or twice a week.  If I went, I was great. That was not good.


And now I'm having to reinFORCE and tell my children, like, please tell me you're using a bathroom every single day. At least try because that's important. You're not setting up a home for colorectal cancer to sit in.


And so the message changes, you know, especially when it's people close to you that you love.


SARA:

So you mentioned wanting to share more information about the offerings of FORCE.


And I could spend multiple episodes talking about all of the wonderful things that FORCE just on their website alone. And that was where I started.  That's really what started my journey with FORCE and led me to the being a P.A.L. or patient advocate leader.


I see that they continually keep it up to date. I share as much as I can, especially, you know, throughout my podcast and on my blog, because I feel like they have taken the user experience - It's easy to find, It's easy to navigate, Here's where I need to go.

This is what I, the information I need to find.


I would love for you to share with the audience what resources available through the organization in addition to the website.


WENORA:

Oh, Sara, I love that glowing recommendation that you gave around that because it, it leads right into how I feel about FORCE myself, that they do a tremendous job of empowering families to understand their hereditary cancer syndromes.


And they offer things like a message board, help lines, support meetings, a private Facebook group, assistance to find health care providers, personalized guidance from a peer navigator, help to understand about insurance and reimbursement, finding financial assistance.


And the X-ray program, which is a reliable resource to help you understand cancer research itself.


And then let's add the clinical trial information where I just shared with you that this is where I found an opportunity for me to participate as a Lynch Syndrome patient in a Lynch Syndrome vaccine clinical trial.  And as you can see, I'm excited to be in.


SARA:

You'll have to keep apprised on how things are going when it's appropriate. I guess you could say from a clinical trial, because these things can last for years. But I know we're all really excited to see, you know, how that evolves and what the outcomes will be.


I have shared on other message boards.So I'm on a couple of Facebook groups for Lynch Syndrome and check to, and when people have said, Oh, I'm new to this, I'm scared, I don't know what to expect.  And I'm right out there putting the link to "I've tested positive, now what?”


That is a great page with so much information to just give you a moment and you're going to read through it and you're going to go, Oh, okay.


I feel like I have a little bit more control because as you said, knowledge is power.  Once you have that, it starts to bring the anxiety down, I feel. I've also been on multiple support group calls - So you can go based on your mutation You can go based on if you have had cancer, there's a previvor group, there's groups by city - Some select cities have actual in-person meetings; Most of them are by zoom.


And then you mentioned x-ray.  There is so much information available online. And whether it's credible or not, it should be the first question that you ask yourself.


X-ray is a great place to go out and vet what you are looking into.  And maybe you can speak to this a little bit more with x-ray.  Say I come across something that I'm like, hmm, a little questionable and I don't find it on x-ray.


Is this something we can bring to you to say, “Hey, can you research this or is this something that's credible?” Is that how you find your information?


WENORA:

Absolutely.  And I mean, I think that's vital that we just don't do a one-shot and stop.  We really need to seek out the truth or as much of the truth of what's necessary out there.


And that could be in the form of reaching out to the platform and saying, “Hey, I have more questions on this.  How can I get this resolved?”


And can you tell me more truth around any particular instance of this cancer research that's out there?  Because we're living in the age of AI now and things can easily be manipulated.


SARA:

There are some visual graphs that show you where it falls in the red to green in terms of its credibility and science and that sort of thing. I think that's a big help.


And then the last area I wanted to point out for the FORCE resources for me personally has been the message boards. If you have a confidential question, you can go out onto the message board and ask that question and you will get just other people that are on the message board who have been through your similar experience.


WENORA:

It is absolutely.  I love the fact that it's based off of other people's journey and experience as well. They're not there to tell you how to live your life, but they can make it a little bit easier for you by telling and sharing their story of what happened to them or what maybe your next steps could be or have you considered something else.


And so I just think they're just great therapeutic measures for us.


SARA:

And everyone's so kind.  It's a little different forum than going out on Facebook and asking a question. And honestly, even most of the like the Lynch Syndrome groups, everybody's gracious. You're not often going to get somebody who's going to be mean.


But I found on the message board, everybody's so kind and so supportive and pointing you in the right direction. That's how I learned a lot of my information on the Surmeno (surgical menopause) groups that are out there as well.


And then which sort of elements to watch out for when you go in through that process and really just bearing in mind, everyone's experience is going to be a little different. 


But it's great to see that you're not alone.


*


So advice for the newly diagnosed. So now we just shared a lot of information.  We talked about the resources, but just yeah, fill me in.


WENORA:

One of the things that you did, Sara, you said something that I really, really like.  And so my first piece of advice is you don't have to do this alone.


FORCE can provide you with your own personal navigator or like you said, those message boards to reach out, Facebook groups, support groups, all of that for people who have gone through a similar journey as you.


So seek out those support groups.


For me, which I did not even find out, I'm going to say maybe six to seven years into my cancer journey, that there was such a person as a psycho oncologist.  I'm like, wait, you mean to tell me there's a dedicated counselor who can talk to me about cancer?  Never knew that.


And while thankfully my patient advocacy has been my therapy for me, there's nothing wrong with seeking out those services if those are needed.


Now additionally, find people and organizations who educate and support you through this journey.  


Now I'm going to say another quote that I believe Maya Angelou said at best.  She said that "People will forget what you said. People will forget what you did, but people will never forget how you made them feel.”


And at the end of the day, people just want to feel that they are important and loved and how we treat people, believe it or not, can be a life or death sentence and can make a difference in people's lives.


SARA:

So true.  I mean, my mind is immediately going to back to our conversation around our medical team, you know, that you feel supported and heard, right?  And I see stories of people who go to the doctor for something that is, they're uncertain of and then they don't feel like they're being heard.


And you're right, it could lead to a life or death situation that they're pushing it off because they say, oh, you're too young to have colon cancer.  Say they're in their thirties, right?  And you know, it's difficult to hear those stories.


WENORA

It is, it is Sara.  And this is where I say not only just being your own self advocate, but being a good communicator, it works kind of both ways.


I mean, we have to really be cognizant of the fact that, you know what, doctors are busy, they get 15 minutes with us or whatever it is.  So we have to, we have to take advantage of that and do our homework ahead of time.


And you know what I found myself doing, had found myself doing through the years and going to the doctor's office, I'd sit there.  He'd say, "so how are you doing today?”


“Oh, I'm okay.”


Not being truthful and tell them what really was bothering me.  Like, you know, “I'm having these really bad back pains or I've had this headache that won't go away.”


Again, if you don't communicate with your healthcare team, and I say team because they're all working in this together to keep you alive and at your best, then, you know, this is your wake up call to do so.


SARA:

Yeah, I love that.  I mean, the communication is essential in working with your medical team. So thank you for reinforcing that. That's a very important detail for people to remember.


Okay, looking ahead. So as we focus on leveraging experts and experiences, that's what I'm planning to do throughout season two - We have experts like yourself speaking to amazing organizations that can help us get through this journey.


I do have other folks around health, wellness, and nutrition and faith planned throughout the rest of the season.


So I guess for you, what message do you hope listeners will take away from your story and from your work at FORCE?


WENORA:

Well, Sara, what I hope is that people will take from my story is that your story doesn't end because the book has been shut.  That you should live your life to the fullest and focus on the positive.


So facing your future without fear is what FORCE wants you and others to do. Helping them understand and improve their lives as they face hereditary cancer continues to be a focus 25-plus years later for FORCE.


And this year, FORCE will not only be celebrating being back in person for our 14th annual conference, but 25 years of educating and inspiring cancer survivors, caregivers, previvors, researchers and scientists.  And we hope that you can celebrate with us.


SARA:

Wow, I love it. I can't wait to celebrate with you guys.  It's going to be great.


Okay, well, Wenora, I know I'm not alone when I say that your strength and your dedication to advocacy is really an inspiration.  So thank you so much for sharing your journey with us.


I know that you're working tirelessly for FORCE and the other organizations that you support and especially for those that you love. So thank you so much for that.


For our listeners who want to learn more about Lynch Syndrome, connect with community or support FORCE's mission in some way, can you tell us where we can find more information?


WENORA:

Please go to the FORCE Facing Our Risk Empowered website and you will find a host of information there to help you through this journey.  Again, remember, you are not alone.


And Sara, thank you, thank you, thank you for providing us with this platform to chat and talk about this.  You're an awesome mom who's bringing awareness that your kids will never, ever forget.


SARA:

Thank you so much. It's been a privilege and an honor really to have you on the show. So thank you so much.


So as we close this episode, I want to encourage you to reflect on Wenora's journey and the importance of awareness and advocacy.


If you want to support FORCE and connect with that team, again, go to their website. I will have the links in the show notes.


You are not alone on this path. So stay informed, stay empowered, and let's continue to support each other.


So thank you so much. Don't forget to check our website at positivegenepodcast.com or even on Instagram.


We'll have more information about this episode and upcoming episodes.


And thanks for connecting with this incredible community. We'll see you in the next episode.


Links referenced in this episode:  



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