Before being diagnosed with colorectal cancer, I was experiencing symptoms, but I did not trust my body. Some of the doctors I saw did not always trust me and what I was saying, and it took me seven months to get diagnosed after being misdiagnosed several times with hemorrhoids.

It is essential to hear and connect with your body and trust it when something feels off, regardless of what doctors may say, and especially if they’re not taking you seriously. Fiercely advocate for yourself.

I was diagnosed with stage 2a colorectal cancer in July 2015 and almost lost my life. Then, I received a lifesaving ostomy in November 2015 that helped me redefine beauty and gain confidence.

My nurse suggested I name my ostomy because it would make noises, and the name would allow me to place blame. “Toodles” is what I decided. Before I knew it, my Toodles had opened up the world of body positivity for me.

Before my diagnosis, I was a model. The modeling industry is body-conscious and strives for perfection. But no one is perfect. Over time, I saw people on social media living a full life with their ostomies and realized I could do that too. I started traveling and reclaiming my life.

I have a vertical scar that runs down my abdomen, a port scar, my ostomy and scars from having my children. My body has evolved, but I have too. I am thankful for my body. I am grateful for every scar because every scar tells a story of my strength. The scars are what make me beautiful.

If I have a day where I am not feeling positive, I find one thing on my body I feel confident about and embrace it.

I also created an Instagram account to reclaim my femininity with an ostomy. I started talking about my experience, and the page grew organically. I have been able to advocate internationally and domestically. It's been such a blessing.

When you are diagnosed with cancer, being an advocate is not at the forefront of your mind, as you are just trying to survive. After I made it through the initial part of my diagnosis, I realized that so many people supported me, and I created a community around me. I learned how important the community is to those in the fight. Through social media, 

I found Fight Colorectal Cancer and their resources

. I wish I had found the resources when I was diagnosed so I could better advocate for myself. Now, I make sure to share the resources.

I was recently declared five years cancer free and celebrated my 53rd birthday. That was a great birthday present! Hitting my five-year mark was powerful because every year as a survivor you think, “Is this the year my cancer will come back?” After hearing the news, I paused and realized I got five more years with my children and my amazing husband of 22 years.

When I talk about my diagnosis, I often say “we” were diagnosed with cancer. My husband and children went through it with me. We were all in fight or flight; we all experienced trauma of some sort; and we all went to therapy together. This experience bonded us as a family so deeply. My family and I have become enriched by this experience.

From Fight Colorectal Cancer: Knowing the symptoms of colorectal cancer and understanding your risks of developing it may prevent this cancer from happening to you or help get a diagnosis as early as possible. Learn more at 

For more news on cancer updates, research and education, don’t forget to 

After being diagnosed with colorectal cancer, my ostomy — which I named Toodles — opened up a world of body positivity for me.

How Naming My Lifesaving Ostomy Helped Me Gain Confidence and Find Body Positivity

Kimberly Holiday-Coleman

Marissa is a “GenXer” living as a “flattie” with metastatic breast cancer since March 2014. 

Marrisa Holzer 

I am new to oncology nursing, so I have only been working with Kari Pavoni in the outpatient infusion room for nine months. There is a tremendous amount of information that I have had to learn since I came here. Kari has been a great source of knowledge to me. She answers all of my many questions with patience. She has come over to help me during patient reactions multiple times, building my confidence in managing those patients.

She has her Oncology Nursing Certification and has advised me on a study plan for my own certification. But I really feel I have learned more from Kari by watching her interact with patients. She approaches all of her patients with kindness, love and compassion. She builds relationships with them and establishes the trust needed to put them at ease during a very scary and vulnerable time in their lives.

Recently, a very kind woman came in for her treatment and had Kari as her nurse. She brought in a large jar of change and dollar bills. She said she had a tradition of emptying her pockets every night and placing it in a jar, and at the end of the year, giving it away to someone in need during the holiday season. This year, she wanted to give it to one of her fellow patients, so she entrusted it to Kari. This was the perfect choice because Kari immediately knew who would be the recipient of the jar. She knew this because she takes time to get to know her patients and really listens to them. A few days later, the patient she was thinking of came in for treatment, and Kari was able to give her this great and unexpected gift. She really made a difference in this woman’s life. That is what I see her do every day.

I am writing to nominate Susan Budds for the CURE Extraordinary Healer Award. She currently holds her Advanced Oncology Nurse certification and Doctor of Nursing Practice. Sue has consistently demonstrated an exceptional combination of compassion, helpfulness and extraordinary expertise in the field of oncology. Sue is a phenomenal advanced practice provider, educator and teammate. In the clinic setting, she is prompt and friendly with her patients who adore her. She is always one step ahead of what the patient needs and will go to great lengths to ensure it is done correctly. 

In countless instances, Sue has gone above and beyond in providing compassionate care to patients, ensuring not only their physical well-being but also addressing their emotional and psychological needs. Sue has a remarkable ability to connect with patients on a personal level, offering genuine support and comfort during challenging times. For instance, she encountered a patient with penile cancer who had severe unresolved mental health issues and distrust of the healthcare system and all medical teams. This patient refused to cooperate with anyone except for Sue. She took the time to listen to the patient and provide him with a sense of reassurance and calmness that many could not do. She showed empathy and made him feel seen. 

Furthermore, Sue has exhibited a high level of expertise in clinical practice. Sue implemented a cancer center-wide initiative to improve hypertension management for patients with kidney cancer receiving tyrosine kinase inhibitors. Not only did she thoroughly educate clinical staff on signs/symptoms of chemotherapy-associated hypertension, but she followed up with action steps to take if a patient with this concern is identified. She was available for follow-up needs from staff and offered her expertise to all involved. 

Her dedication to continuing education and professional development is profound. She stays informed about the latest advancements in nursing and genitourinary oncology. She attends the genitourinary society meetings and the Chicago Genitourinary Rounds to learn about advancing treatment options and patient outcomes. 

She truly has the patients' best interests in mind, and it shows in her daily work. Sue is spoken about in the highest regard throughout Rush University Cancer Center and is truly a pillar in this community. She exemplifies what it means to be an extraordinary healer and is incredibly deserving of this nomination.

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Two nominations for the 2024 Extraordinary Healer award highlight the exceptional contributions of oncology nurses, demonstrating the power of compassionate, patient-centered care.

Oncology Nurses Making a Difference in Patients With Cancer

Margaret Hopkins

The U.S. Food and Drug Administration (FDA) has approved Inlexzo (gemcitabine intravesical system) for adults with Bacillus Calmette-Guérin (BCG)-unresponsive non-muscle invasive bladder cancer (NMIBC) with carcinoma in situ (CIS) with or without papillary tumors, the agency announced, noting that the system is co-packaged with a urinary catheter and stylet used for insertion through the urinary catheter into the bladder.

The treatment’s effectiveness was determined in cohort 2 of the SunRISe-1 trial, which enrolled 83 patients with BCG-unresponsive NMIBC with CIS with or without papillary tumors following transurethral resection, with patients receiving Inlexzo into the bladder every three weeks for six months, followed by once every 12 weeks for up to 18 months.

The system delivers 225 mg of gemcitabine chemotherapy into the bladder, with an indwelling period following each insertion of three weeks prior to removal, and the system is inserted once every three weeks for up to six months, or eight doses, and then once every 12 weeks for up to 18 months, or six doses), or until persistent or recurrent high-grade NMIBC, disease progression or unacceptable toxicity.

The treatment, previously known as TAR-200, was granted priority review by the 

Tumor status, as stated in the FDA’s announcement, was assessed via cystoscopy and urine cytology every 12 weeks during the initial two years of treatment, after which cystoscopy was performed at least every 24 weeks, and biopsies were performed at 24 and 48 weeks after treatment initiation.

 and 51% of patients with a complete response had a duration of response of at least one year.

The treatment’s prescribing information, the FDA noted, includes warnings and precautions describing the risks of administering gemcitabine intravesical system in patients with a perforated bladder, risk of metastatic bladder cancer with delayed cystectomy, magnetic resonance imaging (MRI) safety and embryo-fetal toxicity.

“I see many patients that ultimately become BCG-unresponsive and often face life-altering bladder removal. These patients now may be ideal candidates for newly approved Inlexzo,” said Dr. Sia Daneshmand, principal investigator of the clinical trial and professor of urology and director of urologic oncology at the Norris Comprehensive Cancer Center, Keck School of Medicine of University of Southern California, in a statement included in a news release from Johnson & Johnson. “In my experience, Inlexzo is well-tolerated and delivers clinically meaningful results. This will change the way we treat appropriate patients that haven’t responded to traditional therapy.”

“We are proud of the science that has brought us to this historic moment,” said Dr. John Reed, executive vice president of R&D, Innovative Medicineat Johnson & Johnson, in the news release. “Inlexzo is a novel therapy with powerful efficacy and demonstrated safety profile. As the only major healthcare company that hosts both pharmaceuticals and medical devices, we leveraged the speed and scale of Johnson & Johnson to accelerate innovation and deliver this important therapy to patients."

“At BCAN, our mission has always been to advocate for better todays and more tomorrows for everyone impacted by bladder cancer. This approval represents the kind of progress that brings new options to a community that urgently needs them,” said Meri-Margaret Deoudes, CEO, Bladder Cancer Advocacy Network (BCAN), in the news release. “Patients with bladder cancer need guidance and collaboration with providers to navigate bladder-sparing treatment options, including newly approved treatments like Inlexzo, so they can move forward feeling well-informed and confident.”

For more news on cancer updates, research and education, 

don’t forget to subscribe to CURE®’s newsletters here.

“FDA approves gemcitabine intravesical system for non-muscle invasive bladder cancer,” FDA; https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-gemcitabine-intravesical-system-non-muscle-invasive-bladder-cancer?check_logged_in=1

“U.S. FDA approval of INLEXZO™ (gemcitabine intravesical system) set to transform how certain bladder cancers are treated,” news release, Sept. 9, 2025; https://www.multivu.com/johnson-and-johnson/9342851-en-johnson-and-johnson-fda-approval-inlexzo-gemcitabine-intravesical-system

The FDA has approved Inlexzo (gemcitabine intravesical system) for adults with BCG-unresponsive non-muscle invasive bladder cancer (NMIBC) with carcinoma in situ (CIS), with or without papillary tumors. The approval is based on the SunRISe-1 trial, which demonstrated an 82% complete response rate. Inlexzo is administered intravesically every three weeks for six months, then every 12 weeks for up to 18 months. The treatment is well-tolerated and offers a new option for patients who have not responded to traditional therapies, potentially avoiding bladder removal.

The FDA has approved Inlexzo for adults with BCG-unresponsive non-muscle invasive bladder cancer with carcinoma in situ.

FDA Approves Inlexzo for Some With Non–Muscle Invasive Bladder Cancer

Bridget Hoyt

DIANE HUDSON RN, OCN

Impact of PV on Lifestyle

Video content above is prompted by the following:

How can PV impact a patient’s lifestyle?

Are there lifestyle changes patients can make to help improve the symptoms of PV?

Are there any support groups or resources for patients with PV?

What educational resources can patients utilize to learn more about their symptoms and ways to manage PV?

Do you have any words of advice for patients living with PV?

A panelist discusses how polycythemia vera (PV) impacts daily life and lifestyle management, including beneficial changes patients can make, available support resources and educational materials while offering guidance for living with the condition.

Julie Huynh-Lu, P.A.

 We’ve talked a lot about how this landscape has evolved, with all the new treatment options we have. There’s a lot coming in the pipeline too. CLL [chronic lymphocytic leukemia] is still considered an incurable disease, meaning that even if patients get into remission—maybe they’re on time-limited treatment and aren’t on any therapy for a while, or they’re on watch-and-wait—they’re advised that they’ll need to follow up with us forever. That fear of the CLL rearing up again and needing treatment is always in the background for our patients.

The field is shifting toward, hopefully, finding a way to cure patients with CLL. We’re not there, but a lot of things in development might help us do that. Some things include therapies that are being developed across other B-cell cancers. In CLL we follow something called minimal residual disease, or MRD, and that can be checked in a variety of ways. At a deep level, it looks to see if every single cell is gone. That doesn’t usually happen on BTK [Bruton tyrosine kinase] inhibitors; that’s why they’re given long term. You usually have some small detectable disease, and it’s chronic. One of the ideas—and we’ve participated in clinical trials looking at this—is adding something to someone who’s in a deep remission to try to eradicate those few cells remaining and allow people to come off treatment and hopefully not need treatment again.

One thing that’s being explored in that setting is different immune treatments, so chimeric antigen receptor T-cell therapy is being developed in CLL. That’s where you retrain the immune system to recognize the cancer cells. Bispecific T-cell engagers are another group of drugs that people might hear about in blood cancer in general. It grabs the immune system and the cancer cell, brings them together, and helps the immune system destroy the cancer cell. It sounds like science fiction when I explain it, but it’s exciting that we can be a part of it at our center and many others and give patients hope. I’ll talk to you about treatment now, but we might not need treatment for a few years. If that’s the case, I probably don’t have what I will treat you with in 2 or 3 years. It’s changing quickly. There are a lot of reasons for our patients to be incredibly hopeful. It’s a dramatically different landscape from even a few years ago, and I expect that trend to keep going for the rest of our careers.

We’ve talked about a lot today. Hoshi, any parting words of wisdom that might be helpful for patients?

 As you’ve described, there are a lot of changes going on in the CLL world with treatment. We’re far from the chemotherapy regimen that we used to use. We’re getting in the realm of patients going home, taking pills, and managing their disease like diabetes or hypertension, which is very promising. It’s a very exciting time. When our patients are on watch-and-wait, they often say, “It’s always watch and worry.” I hope this discussion will give our patients more comfort and get them excited about their future.

 Exactly. There’s no reason to treat them if they don’t have symptoms. That doesn’t help the long-term outcome. The longer one can wait, the more likely they are to shift into a new era, where we might have even more effective and better-tolerated drugs. That’s some great wisdom. I like the mention of “watch and worry” because that comes up commonly.

Thank you once again, Hoshi Iida, for this insightful discussion. To our viewing audience, thank you for joining us. We hope you found this session to be useful and valuable in your treatment with chronic lymphocytic leukemia.

Lori A. Leslie, MD, and Hoshiyuki Iida, APN, offer closing thoughts on the future treatment landscape of chronic lymphocytic leukemia.

Future Directions in CLL Treatment

Hoshiyuki Iida, APN

I know this is a tough subject. We love our children and grandchildren and want to protect them from everything out there that will make them hurt. And if you have been diagnosed with cancer and have young children or grandchildren, the worry of when and how to tell them about this scary illness is probably at the top of a long list of your AD (after diagnosis) concerns.

I recently put a resource together for newly diagnosed patients, which includes several videos, where I briefly broach the topic of telling family about cancer. The timing is uniquely personal to each new cancer patient — but the sooner the better, and don’t keep putting it off. Good advice, yes, but also scanty on the “how” part, especially as it applies to telling the youngsters in the family.

The “how” part, like the timing part, is also uniquely personal, and is different for each of you as they were the differences in each of our BC (before cancer) family lives. There are several online sources that offer advice on how to tell your kids that you have cancer. And they are worth looking at, to see if any relate well to your family circumstances, and resonate with you, personally, as a parent.

There are four things I would emphasize about what you are seeing online:

First, this is not a “one-and-done” task. Some advice you may find may suggest you make elaborate plans of the right setting, the right time, the right set of words, and map out what you will say when your kids ask questions. Sounds to me as though you might interpret that to mean you need to take days, maybe weeks or months, to prepare for that first conversation. Don’t fall for that or use it as an excuse to postpone. Your kids, no matter how young, know something is wrong. So, don’t keep putting it off until you work out the perfect speech. It is merely the first conversation, and probably not nearly the most important of those to come, in terms of helping your kids or grandkids come to grips with the concepts of cancer, illness, treatment, and separations due to hospitalizations — and what all that is going to mean to them.

And, it is not a “solo act” kind of task. Again, some of the sites tell you to pick the person who will tell your kids. I say it doesn’t matter who, or how many people, have these initial conversations. I think it is much more important to get some basic facts said – like getting the word “cancer” out on the table, because they are overhearing the word, and are sensing everyone’s fear and worry; and like reassuring them that cancer isn’t something they can “catch” from your hugs and kisses; and repeating as many times as possible that no matter what else is happening or is going to happen, they are loved and will continue to be well cared for. Certainly, the parent or grandparent who was diagnosed with cancer should play a major part in that first discussion with each of the children, but you don’t need to be the only one doing this.Set yourself, and them, up with a path going forward that encourages them to share their concerns with other adults on your “home team.” Kids and grandkids need to know that they can come to several people among your family and friends and clergy when (not if) they have questions and worries. This way, when both you and your spouse or primary support person are too distracted with the everyday burdens of living with cancer – your children know that there is someone else with whom they can share their feelings and concerns.

And, unless you have an only child, know that for each of your children, this series of conversations and intercommunications is individual to each one. Children of different ages and emotional maturity are going to require very different conversations. And they will have much different needs, going forward. And, if you can, identify for each of your kids the persons in their lives who are good “go-to” family members or adult friends, with whom each child seems to most easily and comfortably interact. Then work out with them a plan to support and mentor that child. Finally, if your oldest or most mature-acting child seems to be someone to whom the younger child or children go to when they have concerns or feelings they want to share, keep an eye out for that child to offer support when he or she gets overwhelmed.

And last but certainly not least, my advice to you parents is this: Your cancer will undoubtedly impact the lives of your children. For them, coping with cancer of a parent can produce both developmental and behavioral issues. Look around, now, for support services for your kids in your community. Some communities’ cancer support services even include specialized programs, support groups, even summer camps for kids from ages 6 and up. If your community is one of those, it is worthwhile to get your kids into these programs. It provides a social bonding of kids with the same worries and fears and frustrations, and they do truly benefit over the months and years as part of that peer group. If your community does not offer such programs, check your insurance benefits to see if there are mental health services for counseling your kids, including support groups and family counseling.

In addition to the advice offered online, some cancer centers offer psychosocial services that include help with how to handle the delicate first conversations when you share with your young children the news of your cancer diagnosis.

And there are a few children’s books that focus on stories about a parent or grandparent who has cancer, written from the viewpoint of a younger child, tween or teen. If you decide to get one of these books, make sure that you read them first, yourself, to see if they make sense and apply to your family circumstances.

There is one set of books for younger kids ages 2-6 (one for a sick parent and another for a sick grandparent) written by Kathleen McCue, called “Someone I Love is Sick.” It is (like My Notebook) published as a loose-leaf binder, with a plastic pocket to put the pages that don’t “match” your family.You can read to your children your hand-selected pages of the book. Maybe in a few months or a year, you may add and subtract pages, as appropriate.

All the above, is stuff that I have pieced together from authorities and resources I have researched.

Now, I have my own two cents to add: Please, look for advice and resources that do not further complicate or adversely affect your own efforts to cope, but rather offers a path for you to do the best for your kids but still focus on all the aspects of you and your whole family living with cancer. I am asking you, and the other adult members of your home team, to remember that there is no right or wrong way to do this. Some days, you will think you really got it right and some days, not so much.But it serves no one in the family well, if you are not only sick and fighting your disease, but also making yourself sicker worrying that your kids are being neglected while you are on this journey.

If you have any questions or comments or would like to share your own stories, please feel free to contact me at barbara@newcancerpatient.org

Please, look for advice and resources that do not further complicate or adversely affect your own efforts to cope, but rather offers a path for you to do the best for your kids but still focus on all the aspects of you and your whole family living with cancer.

How to Have the Cancer Talk with Children

Barbara Jaffe

The First Signs of Leukemia

Chronic Lymphocytic Leukemia Diagnostic Process

CLL Treatment Decision Factors

First-Hand Experience with CD20 Monoclonal Antibody Therapy

CD20 Monoclonal Antibody Dose Adjustment and MRD

The Patient's Role in Deciding a Treatment

Achieving Minimum Residual Disease Remission

Chronic Lymphocytic Leukemia Support Network

Advice for Patient's and Caregivers

Lifestyle Changes After Being Diagnosed with CLL

Treating With Venetoclax for Chronic Lymphocytic Leukemia: Samantha’s Story

Nitin Jain, MD, MD Anderson Cancer Center

CURE spoke with the patient advocate and author of “Between Two Kingdoms” and “The Book of Alchemy.”

Suleika Jaouad on Why Self-Advocacy Matters for Patients With Cancer

After receiving her first diagnosis of leukemia at age 22, author and patient advocate Suleika Jaouad is now facing cancer for the third time in 15 years.

Jaouad, the author of the New York Times column “Life, Interrupted” and the books “Between Two Kingdoms” and “The Book of Alchemy: A Creative Practice for an Inspired Life,” now works with 

, the organization formerly known as the Leukemia and Lymphoma Society.

 to share her advice for patients facing a diagnosis of cancer.

When I first got diagnosed, I was focused on treating and hopefully curing my leukemia. What I wasn’t as focused on was the impact it would have on my whole self and on my whole life. My very first piece of advice that I give to patients is to seek out support groups, to find therapy, to make sure that you’re attending to the more invisible imprints of illness on your mental health, on your work, and on your whole self.

No matter how brilliant and wonderful your medical team might be, learning to advocate for yourself is a crucial part of becoming a patient. I learned that through the misdiagnoses that led to my actual diagnosis, I learned that in Googling late one night the side effects of the chemotherapy I was about to start — and learning that they were going to make me infertile — and having to push to make time for fertility preservation treatments.

These are all things that may seem like an aside to cancer, but, to me, are an important part of making sure that you are taking into consideration who you are as an individual, not just as your medical record number, and whatever your particular priorities might be.

Every patient is different. At 22, I approached my new diagnosis like a journalist might. I wanted to read every study I could get my hands on. I wanted second and third opinions. I scoured the internet for information, and I lived by the notion of “knowledge is power.” This time around, given that it’s my third time going through this, the internet is not a useful place for me. In fact, it’s a scary place for me to go. So I’ve appointed a friend of mine who serves the role of advocate, who’s doing that research, who’s contacting doctors for second opinions.

However it is that you want to manage it, whether you want to be the collector of the information or you want to appoint someone in your family or friend group to help you manage that, pushing beyond the information that’s immediately presented to you and making sure you have all the information you need to choose the appropriate treatment path and supportive services for yourself is essential.

Transcript has been edited for clarity and conciseness.

Suleika Jaouad is the author of “Between Two Kingdoms” and “The Book of Alchemy"; she was first diagnosed with leukemia at age 22.

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