Tag Archives | rectal cancer

Fear of a Cancer Recurrence; An Emotional Conversation With Courtney Forget


Courtney Forget & Bagel Man

A cancer recurrence is every cancer survivors greatest fear. In her return visit to the WE Have Cancer podcast, Courtney Forget talks intimately about this fear. We also discussed:

  • How she went from looking forward to her ileostomy reversal – as discussed in Episode 43 – to loving her life with a permanent ostomy.
  • Living with the constant fear of a cancer recurrence after having two “cancer scares.”
  • The importance of getting second, and even third, opinions.
  • Her thoughts on being naive about her initial diagnosis and how she looks at her survivorship today.
  • Why she’s not a fan of ringing the bell at her cancer center after completing treatment.
  • The role her husband has played as her cancer caregiver.
  • The reason she adopted a Greyhound dog and why she’s training him to be a therapy dog.
  • The challenge of moving to a new city and finding a new Oncologist.

Links Mentioned In the WE Have Cancer Podcast

Courtney’s first appearance on the Colon Cancer (WE Have Cancer) podcast – https://wehavecancershow.com/043

Pet Partners – https://petpartners.org/

WE Have Cancer Links

Subscribe to the show – https://pod.link/wehavecancer

Follow WE Have Cancer on Social Media

Like our Facebook page – https://www.facebook.com/wehavecancershow/
Join our private Facebook group – https://www.facebook.com/groups/wehavecancershow/
Follow us on Twitter – https://twitter.com/wehavecancerpod
Follow us on Instagram – https://instagram.com/wehavecancerpod

Know someone touched by cancer who has an inspiring story?

Nominate a guest to appear on the podcast – https://wehavecancershow.com/guest

Email Lee

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How One Person Can Influence Favorable Cancer Legislation, With Michael Holtz


How One Person Can Influence Favorable Cancer Legislation, With Michael Holtz

Michael Holtz is a 6 1/2 year survivor of Stage IIIB rectal cancer and is the author of the book It’s Not Harder Than Cancer. Michael first appeared on this podcast in 2015. You can listen to that interview here.

Michael and I discussed the cancer advocacy work he’s been doing with the American Cancer Society and as the Tennessee state representative for the American Cancer Society’s Cancer Action Network – ACS CAN.

In April 2018 the Provision CARES Foundation recognized Michael Holtz as the Patient Advocate of the Year.

 

Links Mentioned In The Show

Michael Holtz’ website – http://www.michaelholtzonline.com/

Michael on Facebook – https://facebook.com/michaelandrewholtz/

Michael on Twitter – https://twitter.com/michaelholtz

It’s Not Harder Than Cancer – Available on Amazon

 

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Colon Cancer’s Tattooed Pinup Girl, Tara Principali

Tara Principali

Colon Cancer’s Tattooed Pinup, Tara Principali

Tara (pronounced Tar-uh) Principali was diagnosed with Stage 2 rectal cancer five years ago at the age of 30. Though she once lived an unhealthy lifestyle, weighing as much as 270 lbs., she dedicated herself to fitness and healthy eating prior to her diagnosis and lost 130 lbs. In addition to the rectal cancer diagnosis Tara also learned she had Lynch Syndrome.

After a partial colectomy and temporary ileostomy, Tara was considered in remission. She didn’t undergo any chemotherapy or radiation, since her cancer was caught early. Six months after her ileostomy and j-pouch surgery, Tara’s symptoms returned. She went back to her doctor who ran a series of tests and diagnosed her with Crohn’s Disease.

Tara now has a “new normal.” She eats a healthy diet and is a competitive bodybuilder.

Related Links

Tara’s story from On The Rise, produced by the Colon Club

Tara on Instagram

Lynch Syndrome

Ileostomy

J-Pouch

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Her Attitude and Spiritualness Helped Get Her Through Rectal Cancer

Kari Amarosso

My Attitude and Spiritualness Helped Get Me Through Rectal Cancer

Happy New Year! There is much to look forward to in 2018. In March, I celebrate my 7th “cancerversary.” This is probably why, being Stage IV, my oncologist called me an “outlier.” I’ll take that! Next month The Colon Cancer Podcast will celebrate its 3rd anniversary. Also, on February 8th – 10th I will be attending Podfest; one of the largest Podcasting Conferences in the world.

In March I will attend my first Call-on Congress with the wonderful folks from Fight CRC. In April, The Colon Cancer Challenge, along with Northwell Health, will host the Early Age Onset-Colorectal Cancer (EAO-CRC) Summit in New York City.

During this episode I interviewed Kari Amarosso. In 2009 she was diagnosed with Rectal Cancer. In May, Kari will celebrate her 9-year “cancerversary.” During our conversation, Kari talked about how her positive attitude and spiritualness helped her cope with her disease.

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Supporting the Ostomy Community, With Deb Fox

Supporting the Ostomy Community, With Deb Fox

Supporting the Ostomy Community, With Deb Fox

Deb Fox has made it her mission to help the members of the ostomy community. She has created a private Facebook group – OstoMyFamily – to provide those with ostomies a private, safe forum to discuss all things ostomy. Her websites – ostomy211.com and ostomy211.org -provide numerous resources, along with support, for the ostomy community.

Deb received a complete hysterectomy in 2012 for ovarian cancer, and an Ileostomy in 2014 due to Ulcerative Colitis. The UC had cut the blood supply off to her small intestine, so she was left with 4 1/2 ft of the normal 25 ft of intestines. At the time, she had no insurance. “What good is having an Ileostomy to save your life when the quality of your life looks to be extremely debilitating?” Deb said. That is when she realized she needed to be one of the people to step up and make a change. The first thing she did was to locate the United Ostomy Associations of America (UOAA), and become a certified visitor. She then volunteered at the hospital where she received her surgery. It has blossomed from there. There are many, many reasons why someone my need an ostomy. Cancers, IBD, Birth defects, traumas, etc. This is why our ribbon is rainbow colors – It gives respect to all of the different colors of awareness ribbons.

Deb’s Links to Ostomy Resources:

  • ostomy211.com – is like a yellow pages directory for ostomates. It is broke down into categories so people can better locate the resources they need.
  • ostomy211.org – will give you a more detailed listing of our programs.
  • facebook.com/groups/ostomyfamily – is the online support group we have created for ostomates. It is a private group with over 2200 ostomates and nurses.
  • OstoMyCare. We are working to improve healthcare, thus quality of life to ostomates through collaborations in palliative care. From the doctors, nurses, clinics, and hospitals to support groups, home health, counselors, etc.
  • ostomysupplies.ostomy211.org – provides ostomy supplies for those who are experiencing financial hardships.

 

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Sex and Intimacy While Dealing With Cancer, With Dr. Sage Bolte

Sex and Intimacy While Dealing With Cancer, With Sage Bolte

Sex and Intimacy While Dealing With Cancer, With Sage Bolte

A couple of month’s ago I received an email from fellow survivor and former podcast guest, Stacy Hurt. She said she recently attended a presentation where Sage Bolte was the presenter and I had to have her as a guest on the podcast.

Dr. Sage Bolte serves as the Executive Director of Life with Cancer and Associate Director of Psychosocial Programs for the Inova Schar Cancer Institute.

She talked about sex and intimacy and the impact that a cancer diagnosis can have, not only the patient, but the caregiver as well. We discussed the different challenges that men and women face along with the patient/caregiver dynamic.

This was a frank and informative discussion.

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Stacy Hurt – Overcoming Stage IV Colorectal Cancer Through Integrative Medicine, Diet and Faith

Stacy Hurt - Overcoming Stage IV Colorectal Cancer Through Integrative Medicine, Diet and Faith

Stacy Hurt – Overcoming Stage IV Colorectal Cancer Through Integrative Medicine, Diet and Faith

Stacy was diagnosed with Stage IV colorectal cancer on her 44th birthday, September 17th, 2014 after experiencing symptoms of abdominal pain and bleeding.  Stacy put off a visit to her doctor since she was a health-conscious, athletic, non-smoker who maintained a normal weight.  The symptoms were merely “an annoying inconvenience.”  At the time, she was balancing a full-time job with raising her 2 sons, Griffin (now 13) and Emmett (now 11).  Emmett suffers with a rare chromosome disorder (one of three in the world) which renders him without the ability to walk, talk, or function for himself in any way.  He has multiple special needs and demands constant supervision.  He has the mental and physical capacity of a 6 month old baby.  Caring for Emmett requires the attention of not only Stacy and her husband Drew, but also a nurse.   To say Stacy had her hands full would be an understatement.

So, busy with her day to day role as supermom, Stacy self-diagnosed irritable bowel syndrome (IBS) or internal hemorrhoids until the pain was too much to bear.  A colonoscopy revealed the most shocking and most unexpected horror imaginable:  a tumor in her rectum so large that a scope could not get around it.  A subsequent scan revealed cancer in her liver, 5 spots on her lungs, and 19 lymph nodes.  She was given a 10% chance to survive 5 years and a treatment plan which included chemotherapy, radiation and ultimately surgery ONLY IF she responded, which was a 50/50 shot in itself.  The doctors could not believe it, especially considering Stacy’s lack of risk factors, lack of family history, and age (colon cancer is typically diagnosed in people over 50).

With her usual vigor, determination, and sense of humor, Stacy took to the task of beating colorectal cancer.  She was fortunate enough to have a response to chemotherapy (a protocol called FOLFOX coupled with a drug called Avastin) which qualified her as a candidate for a 5 hour colon and liver resection surgery in April, 2015.  Unfortunately, a medical mistake during surgery caused Stacy severe internal bleeding where she lost half of her blood volume.  She was immediately rushed back into a second, 5 hour emergency surgery and spent a week in the ICU fighting for her life.  As her oncologist later remarked, “anyone else would have died.”  But not Stacy.

She was declared as NED (no evidence of disease) in March, 2016.  Stacy continues maintenance chemotherapy for life (43 rounds and counting…) every 3 weeks.  She feels and looks great.  You would never suspect what all she is dealing with.  She credits her faith, family, friends, exercise, positive attitude, and integrative oncology modalities for her remarkable recovery.

“If it were just Stage IV colorectal cancer or just raising a profoundly disabled child, I could probably handle it.  But managing both is completely overwhelming.  I am enormously blessed to have a support system who helps me, when thee last thing I want to do is ask for help.  It’s really not my style.”

Stacy offers a unique perspective. Professionally, she has spent 20 years in healthcare management on the provider and delivery sides, including roles in operations, strategy, sales and training.  Personally, her battles as a patient and an advocate for not only herself but also her disabled son have fueled her recent work as a public speaker, fundraiser, and consultant.   Stacy’s mission is to raise awareness of inclusion for all persons with disabilities and exemplify a “keep it real” approach to fighting and beating cancer.

Learn more about Stacy and connect with her at:

Her website: http://www.stacyhurt.net/

Her Facebook page: https://www.facebook.com/stacyhurt17

On Twitter: @Stacy_Hurt

On Instagram: stacy_hurt

 

 

 

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Quality of Life Decisions and Palliative Care, with Dr. Manouchka Joseph, M.D.


Podcast logoManouchka Joseph is the highly motivated new Medical Director for Palliative Medicine at Banner Desert Medical Center in Mesa, Arizona. She came to Banner in 2014, and under her leadership, the Desert Palliative Medicine Department is growing. She is also a Clinical Assistant Professor for University of Arizona, where she facilitates education for Nurse Practitioners and Fellows interested in Palliative Medicine. She graduated from Faculté de Médecine et de Pharmacie Université D’état in Port-au-Prince, Haïti. She completed her residency in Internal Medicine at Flushing Hospital Medical Center in Flushing, New York and her fellowship in Hospice and palliative medicine at North-Shore LIJ Health System in Manhasset, New York. She has been in Palliative Medicine since 2011.

Palliative Medicine is a medical sub-specialty that focuses on the care for medically complex individuals who have high care needs and often spend considerable time in the hospital. Dr. Joseph was drawn towards Palliative Care in her second year of residency when she found that the critical care doctors, because of the speed of the work, did not have enough time to spend time with the patients and their families, particularly those chronically ill patients suffering from multiple comorbidities. Her desire is to help families in that crucial point in managing their health care by addressing their emotional, social, and medical needs.

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Never Too Young For Colorectal Cancer, With Abby Bott

Never Too Young For Colorectal Cancer, With Abby Bott

Never Too Young For Colorectal Cancer, With Abby Bott

In this episode, Colorectal Cancer survivor, Abby Bott, shared her interesting story with me. Here are the links to the articles she mentioned during our conversation:

The Discover Magazine article about her experimental fertility preservation procedure.

A video of Abby discussing her fertility preservation procedure.

I Have Lynch Syndrome

Lee:     Hi Abby, welcome to the show. Thanks so much for joining us. How are you?

Abby:  Hi, Lee. Thank you so much for having me. I’m doing really well.

Lee:     Oh, I’m glad to hear. Really well is what we always want to hear. You and I met briefly at Live Your Best Life 2015 in Arizona last fall and it took us this long to reconnect and get a chance to share your story, but I’m glad we’re able to have the opportunity to do that.

Abby:  Yeah, it was too briefly. There were so many great people to meet and such a short amount of time to meet everybody in, so I’m glad we’re doing this.

Lee:     I am too. So, for our listeners that may not know you and know your story, you were diagnosed so, so young. Tell us about that.

Abby:  Yeah. So, I was twenty-two when I started having symptoms and I’d just turned twenty-three. I was still in college in my last semester at U of I in Illinois and I was diagnosed with stage three rectal cancer at twenty-three.

Lee:     Goodness. Now, did you run into the trouble that so many young survivors have run into, trying to get a doctor to believe your story and understand the severity?

Abby:  I think I had a few different complications. I think I was part of the problem: I didn’t go into the doctor as early as I should have and I had a stressful semester and I thought,  okay, I have an ulcer or something. I’ve never had anything up until that point that didn’t clear up on its own, so I took my symptoms to mean, okay, something’s wrong but I don’t know exactly what, but then I had all the typical blood in stool and realized that I was losing weight and not meaning to lose that much weight, and the symptoms just started adding up. And so it took me going into the school health facility and saying, “What’s going on?” And I don’t think that they’re necessarily equipped to say you have cancer, so it took several rounds of going in to see different doctors there and then they referred me over to an actual gastroenterologist who was able to do the colonoscopy. So, it was just from the colonoscopy where the doctor came out and immediately looked horrified for me and said, “This is really bad – you need to go see an oncologist and a surgeon tomorrow for a consult.” So, once I was diagnosed, things sped up so fast, but it took myself a while to get it together enough to go see the doctor and then a few more months before I was actually having that colonoscopy.

Lee:     How did you and your family handle that news?

Abby:  Well, by that time, honestly, when I was first told “You have a large tumor,” I felt kind of relieved, just because it was like, okay, here’s your diagnosis, finally, and it just felt like let’s figure out what to do now. It was so many months of wondering what was wrong and worrying, and I was trying to go to class and finish my degree and there was just a lot of stressful factors in that time, so it was good to just know what it was and to try to move forward, even though I know that every doctor gave me the pity and horrified look of like, “This is really bad.” But for me it was relief, weirdly enough, and of course my parents were devastated and everybody was shocked. You don’t expect that at twenty-three.

Lee:     No. No. So, what was the treatment plan that was prescribed for you?

Abby:  So, I immediately had a port put in and I saw my oncologist and saw a whole lot of doctors in those first few days, and one of the people was a younger nurse practitioner, and she was not that much older than me; she was probably younger than how old I am now at the time, but she said, “We’re going to have to do chemo and radiation and if you don’t do anything to preserve your fertility, that is probably going to be lost. Is that something that you’ve thought about?” And being twenty-three, of course I hadn’t, so very quickly she referred me to a specialist who advised that I go to Northwestern in Chicago and have a– at the time it was an experimental surgery to have one ovary removed and cryo-preserved and to just go through the fertility preservation before I started the chemo and radiation.

Lee:     That’s amazing the nurse practitioner of all people, and I don’t mean that disrespectfully, but that kind of sounds like it just really came out of the blue that she would think of that. How amazing is that?

Abby:  Yeah, and I think, now looking back, I think it was because we were so close in age and she’d gone through school and she was probably on the verge of thinking about having children herself, and maybe she just felt more like, “Oh, this could be me or anybody my age,” and she was thinking about it for me, luckily, because I wouldn’t have thought of it.

Lee:     Right. So, tell us more about this. This was pretty experimental at the time, wasn’t it?

Abby:  Yeah. So, I was told that it was, like I said, an experimental surgery. I was told that it was going to be one of the first hundred people ever to do it, and the hope was that they would remove the whole ovary and put it in the freezer and they moved another one, just kind of pinned it somewhere else to try to get it out of the radiation field so it wouldn’t be affected. And that was the hope, and they had said, I think at the time – and this was in 2009, late 2009, so it’s been a number of years now, so science has definitely unfolded more, but at the time, all of this was experimental – and they told me that at the time about ten babies had been born through this, so I thought, okay, well, that sounds more promising than having no options. Because of the size of my tumor, it was like softball-sized and it was stage three rectal cancer and I’d already been having symptoms for so long, so my oncologist wanted to immediately start chemo and radiation. So, to do that, I didn’t have the amount of time that it would take to extract eggs or do any other options for fertility preservation, so this was kind of it, and since that was it and that’s the direction I was told to go when I was completely blindsided by all of this, I just followed and did what my doctor told me and said I would rather have options than no options later if I survived this. But it was a very hard decision a the time, because my parents even said, “What if waiting another week to do this surgery before you start chemo and radiation, what if that affects your life? What if you’re putting hypothetical children in front of your life now?” So, it was a really hard decision to make, but I just felt like it was the decision for me at the time, and now I’m still glad that I have options. So, one of the great things about all of this surgery and the experimental and the science part, an article just came out in Discover magazine just this week in the September issue of Discover about this cryo-preservation, and the doctor at the oncofertility at Northwestern who started it all, and then I’m featured in the article, so–

Lee:     I was just going to ask you about that. How did that come to pass that you wound up connected with this article and featured in it?

Abby:  Yeah, so, I mean it’s really cool to have seen this come from 2009 to me having surgery to now I’m in a magazine, but I also did a documentary-type patient navigation-type film for Northwestern, because there were only a handful of us who had done that surgery up until that point. So, on the oncofertility website through Northwestern, there’s a patient navigation and you can click on different videos and see testimonials, like stories of people who have done this and had options and people who have had children as a result, and so I think it’s a really good patient navigation tool. So, somebody at Northwestern connected the author from Discover magazine who wanted to do a larger article about it, so they called on me.

Lee:     Oh, and now you’re famous. [chuckles]

Abby:  And now I’m famous. [chuckles]

Lee:     So, for the listeners, I’m going to repost that video on the accompanying post with our interview at TheColonCancerPodcast.com so people can see it right from our website too. Now, if I have the story straight, at what point did you realize and was this– was the cryo-preservation before or after when you found out that you wound up needing to have a full hysterectomy?

Abby:  So, that came– well, the cryo-preservation came first. So, I was diagnosed in 2009, I had that surgery in 2009 and then I followed that up with chemo and radiation and the surgery to remove my tumor and a whole lot of other treatment and follow-up things. It wasn’t until years later in 2014 I was having some other issues, and I was twenty-three when I was diagnosed, which is strange, so it turns out that my family has Lynch Syndrome, and I didn’t actually know about my genetics before I had these symptoms, and it had just come about through my family and through the referral to genetic counselors and all of that. So, I have Lynch Syndrome and that is, as you probably know, something that gives you like an 80% chance of getting colon cancer throughout your life and something like a 60-70% chance of endometrial-type cancers. Some of my aunts and my mom had had uterine cancer, so it was due to complications and then the high risk of cancer in the future that I did have the hysterectomy years later in 2014.

Lee:     All right, just for clarification so people don’t think I’m a total idiot, obviously you couldn’t have had the preservation surgery after the hysterectomy. What I meant to say was the decision process: which came first? So, I just wanted to clarify. As I’m listening to you speak, I was like, that’s not what I meant, but I know that’s how it came out. So, yeah.

Abby:  Sorry to interpret it the wrong way.

Lee:     No, you didn’t, it was my fault; I wasn’t clear. And for listeners who are looking for more information on some of these hereditary cancer syndromes, if you go back in The Colon Cancer Podcast library, I’ve had the pleasure of interviewing Georgia Hurst and Ellen Matloff, I think that was episode ten. Georgia Hurst started her nonprofit IHaveLynchSyndrom.com and they run a terrific Facebook group called GenCSM, which stands for Genetic Social Media Facebook page, so check them out at GenCSM. And I also interviewed Dr. Travis Bray, I believe – I’m doing this from memory so I could be off, but just check The Colon Cancer Podcast website – I think it was episode seven. He is a FAP survivor and he and his wife Shawnie have a wonderful foundation and website called HCCTakesGuts.com, I think it is. I’ll post it on the website where people can get more information on these hereditary colon cancer syndromes. So, you didn’t know about Lynch until after you were diagnosed?

Abby:  I did not know I had Lynch Syndrome. I actually didn’t know filling out forms in the doctor’s office and they ask you, “Do you have a family history?” I always said no because I didn’t realize and I didn’t know that I actually really have a long family history of colon cancers especially, but then endometrial cancers as well. I don’t really know if my family knew that there was a name for it, Lynch Syndrome – I think a lot of people just thought we have a lot of cancers, but even if they did, Lynch is kind of a relatively new term in the last few decades. So, I didn’t know until my parents were with me the day after I had my colonoscopy and then I had to go to the surgeon and the oncologist the next day and I was filling out those forms again and it said, “Do you have a family history?” And I said no, and my mom was like, “Well actually, yes.” So, she knew that her brother had had cancer and her father had had cancer and it was just not one of those things that came up at family Christmas and I didn’t know. So, I’ve definitely preached to know your family medical history to other people, because now I do know and now I know how far back it goes and what Lynch Syndrome means, and its appropriate screenings and things like that now, but I didn’t know then.

Lee:     That’s funny you mention Christmas dinner, because when I interviewed Georgia Hurst and Ellen Matloff last year, they were saying that is the best time to talk about it because that’s when you have all your family together, and it’s one of the rare times in most families that you have as many family members together and it may not be what you want to talk about at the dinner table, but it is a good time to ask those questions and know about it. So, I find that kind of funny that you used that correlation there.

Abby:  Yeah. Well, I completely agree, and actually ever since my diagnosis, I’ve made a strong point to be the family advocate, and we do have those conversations now at Christmas. But, you know, my mom is one of seven children and I have a lot of cousins and with her side of the family we did only get together a couple, two, three times a year then and I just feel like now we, my many cousins who could have Lynch Syndrome, we talk about it now. The first Christmas that happened after my diagnosis, I couldn’t make it to their celebration, so I wrote up a letter, like, “Hey family members, read this at Christmas because I can’t be there to tell you to go get screened for this.”

Lee:     Good for you. Good for you.

Abby:  It started with my family, the advocacy for it, and I just worked my way out.

Lee:     Well, speaking of that, I found it so interesting in reading your story, you know, so many people are able to share, or are fortunate to share, that something good comes from this, and for you, your experience with cancer led you down a new career path. Tell us about that.

Abby:  Yeah. I mean, I think a lot of weird blessings have come out of something so terrible, but I went to school for psychology, and then in my last semester there when I was– a wrench was thrown into my whole life plan, I didn’t know anything about insurance or anything about the medical world at all, and I didn’t know anything about what I needed to know; I didn’t even know my family history. So, advocacy and knowing the medical world more has become really important to me, and sharing that knowledge with other people is really important to me now. If I can help anybody with my story, I want to. I found a nonprofit in Illinois after I was healthy enough to work, and it was called Campaign for Better Health Care, and I thought, that sounds like exactly what I want to do with my life. Of course I want to campaign for better health care. So, I started working there and they led me to the current organization that I’m at, which is a health policy and advocacy nonprofit here in D.C., and yeah, I just hope that I can help other people navigate the system better and maybe make it better from within. I’m on the other side now, so we’ll see where it goes from here.

Lee:     So, let me ask you this as we wrap up, and I know you’re one of our loyal listeners and I really appreciate that, so you know how I usually wrap up with a question that– however we want to shape it, if someone who’s listening, they were recently diagnosed or are hesitant to speak up because they’re young and they don’t think anything’s really that serious, knowing what you know now, what advice, Abby, would you give to someone in either of those situations, or even to someone who may be caring for someone who was recently diagnosed? What would you– what are your words of advice?

Abby:  So many things. I think if you can, know your family medical history, and if you are newly diagnosed or you think something is wrong, to always listen to your body. I went against my better judgment and didn’t go to the doctor as soon as I should have, and I let a lot of fear get in the way of going to the doctor – fear of what the diagnosis could be or what is my body doing, or even just like the financial cost. I was in college, so I thought going to the doctor, health insurance and all of that involved was going to be too much for me to handle, but obviously going sooner would’ve been better than waiting. So, I would just listen to your body, and as far as things like fertility preservation and all the taboo topics that maybe doctors don’t bring up, I think you should definitely bring it up and ask everything you want to ask, and if you don’t get the answers, as a different doctor and always get a second or third opinion on things that you’re not so sure about, because no doctor’s going to give you the same advice. So, just be your own advocate.

Lee:     And if someone is in that similar situation, particularly around fertility preservation, can they find you on Facebook and reach out to you for just words of advice?

Abby:  Yeah, absolutely. I’m always open to meeting new people and I would love to use my story to help anybody else, so I’m definitely out there on social media.

Lee:     You are. You are. And that’s another reason why I’m glad to have you on the show and that’s why we do this is so that people like you, Abby, can serve as an inspiration to someone else that may have just received the devastating news and all these things are running through their head, and now they get to hear your story and what you’ve done, and you can kind of be a guiding light to some of these folks, so thank you for that, and I’m glad to hear your health is good and I wish you nothing but the best, especially in that department, that it stays good. And we were just chatting before the show started and we all know how important, especially those of us who have been through the cancer journey or are still in the midst of it like I am, that birthdays are a wonderful thing, so an early– so, I think when this comes out, actually, we will have passed your birthday, so I will then go ahead and say a happy very special birthday to you. Our birthdays are a day apart, which is very cool.

Abby:  Yeah, happy birthday to you too. Thank you so much.

Lee:     Yes, and I just want to wish you all the best.

Abby:  Yeah, thank you so much.

Lee:     Thanks, Abby. Take care.

 

Abby:  You too.

 

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Living With Stage IV Colon Cancer, With Jana Downing

Jana Downing

Living With Stage IV Rectal Cancer, With Jana Downing

Jana’s Story:

I was diagnosed with Stage 4 colon cancer on October 30th, 2014 after having complained of rectal bleeding and thin stools to my primary physician for close to a year. Due to my age, 39 at the time, my symptoms were originally discarded as likely hemorrhoids and I was not referred for a colonoscopy until after a lot of time had passed and symptoms did not resolve. Once I had the colonoscopy, they found a near obstructing tumor in my sigmoid. An immediate CT scan revealed 3 tumors in the liver, one of which over 5cm, as well as several indeterminate lung nodules. I had just turned 40. I was urged to start immediate treatment to avoid colon obstruction. I got opinions at Swedish Cancer Institute on First Hill as well as Seattle Cancer Care Alliance, and both teams recommended neoadjuvant chemotherapy followed by liver resection and more chemotherapy after. Since Swedish had earlier availability for my treatment, I opted to start treatment with them at that time.

My first CT scan after starting chemotherapy showed very good response to Folfox+Avastin, and after 8 cycles I was scheduled for a combined colon and liver resection which took place On March 25th, 2015. I had very quick recovery and was able to resume chemo within 3 weeks completing all 12 cycles of Folfox.

I had my post-treatment CT scan 1 month after completing chemotherapy and was told that I had no evidence of disease and I was to be scanned again in 3 months with no additional treatment. However, after reviewing my radiology report myself I noticed that it made reference to increased lung nodules. I went back and reviewed previous reports and noticed that my pre-existing lung nodules had grown slightly while I was off chemo for my liver/colon surgery. Having read a lot about my cancer since my diagnosis, I became very alarmed and asked my oncologist for reevaluation and referral to a thoracic surgeon. I met with the thoracic surgeon 2 weeks later, but he opted to wait for my next scheduled CT scan at 3 months to determine whether a surgery might be needed. Both my oncologist and the surgeon were of the opinion that the chances of these nodules being cancerous was fairly low in my case. I spent the 3 months worrying and doing everything possible I thought I could do to help keep my cancer under control, which included eating better, multiple supplements, and daily hiking. I also continued reading and educating myself on everything related to colon cancer.

Unfortunately, my October 2015 scan confirmed my suspicion, and noted that 2 lung nodules in my right lung had almost doubled. I was quickly scheduled for a surgery, which took place right before Thanksgiving 2015. During the surgery, another tiny nodule was found and all 3 were confirmed to be cancerous. According to my surgeon, that was bad news of recurring disease. On a positive side, my lymph node biopsy around the lungs was negative.

After another 6 weeks after the surgery, I had another CT scan. It listed another 5 nodules – in both lungs – and made reference that they have increased from the previous scan in October. What this meant is that the 5 nodules had been there in October, but were missed by the radiologist at that time. It also listed a new larger nodular opacity right at the resection site, concerning for local recurrence. I felt devastated. It was my oncologist’s opinion, after meeting with my thoracic surgeon and the tumor board at Swedish, that my disease was recurrent and systematic and I needed to be placed on chemo for life. They would no longer offer me a surgery.

I was not satisfied with my prognosis and treatment plan at Swedish and again sought a second opinion at SCCA. Dr. Andrew Coveler was recommended to me as someone who would be a good fit for my own personality and tendency to ask a lot of treatment questions, so I requested an appointment with him. After reviewing my scans and records, Dr. Coveler was not convinced my disease was systematic, because the majority of the nodules had been there and I had no other disease recurring elsewhere, coupled with the fact that my CEA had been in normal range (1.7- 2.2) ever since my liver was resected. However, to be sure, he wanted me to have another scan in 8 weeks to determine if new disease would pop up. If not, he would refer me to Dr. Douglas Wood for thoracic surgery on each lung.  Again, while waiting, I focused on eating better, daily hiking and supplements to try to help keep my cancer under control.

The next scan in March 2016 showed slight increase in some of the existing nodules but no new disease, clearing me for referral to Dr. Wood. Dr. Wood recommended an open thoracic surgery of my left lung first, and surveillance and reevaluation of my right lung to determine if another surgery there would be feasible as well.

I had my left lung resected at University of Washington on April 25th. 3 out of 4 nodules removed were cancerous. My follow-up CT showed new suspect nodules in the lung that was just operated on, and my right lung surgery has been put on hold pending verification that those are cancer. Unfortunately the nodules were too small to call either way on the CT scan. My next CT will be in Mid-September and I remain off treatment till then. Again, I am spending this time doing what I can researching my disease, eating better and hiking daily. I am also looking into back up options such as the laser lung surgery available in Germany and the UK which allows for the removal of multiple lung metastases.

About me

I am a 41-year old Creative Director, Graphic Designer, photographer and fine artist. I have been married to my spouse Daryl for 15 years and together we have two children – Jasmine, 13 and Jeremy, 8. I have lived in the Seattle area for 11 years, after having spent years on the East Coast and in the Midwest. I am originally from Sofia, Bulgaria.

After my cancer diagnosis, I rekindled my passion for fine art and started actively painting again, something I had put to the side while being busy with my Creative Direction career. I have recently started showing my art and participate in the Kirkland Art Walk. It is my goal to have an art exhibition benefiting local colon cancer patients through a foundation I have started to work with closely – Washington Colon Cancer Stars. My artwork Big Blue Hope was also recently selected for the 2017 Expressions of Hope Calendar.

Almost 2 years into my diagnosis, I still work full time and have not stopped doing anything I used to do before diagnosis – to the contrary – I make a conscious effort to enjoy every moment and get the most out of each and every day. One goal I have is to walk or hike outdoors every single day. I do so after work in one of the many Seattle parks or beaches, and in the Cascade Mountains over the weekend.

I also became passionate about helping other colon cancer patients anywhere in the world through online support groups. After participating in a number of existing groups, in late 2015, I started a Stage 4 colon cancer support group on Facebook, which in less than 6 months has more than 450 members. I try to use my recently acquired knowledge of the disease to help others ask the right questions and navigate their own treatment options with more ease. I clearly remember how scared and isolated I felt when I was initially diagnosed, and our group is there to give people an immediate access to first-hand experience and many success stories of others who also face a Stage 4 colon cancer.

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