Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Tina, a patient advocate and founder of Own Your Crohn’s and co-founder of the South Asian IBD Alliance (SAIA), shares her experience with Crohn’s disease. Diagnosed over 18 years ago, Tina initially showed symptoms of irritable bowel syndrome (IBS) and gastroesophageal reflux disease (GERD), as well as red eyes and joint pain in childhood. Although these signs pointed to inflammatory bowel disease (IBD), it wasn’t until she was 21, after pushing for a colonoscopy, that she received her first diagnosis: ulcerative colitis. Due to family history—her father passed away from colorectal cancer, which crohn’s disease can increase the risk of getting—she knew the seriousness of her condition, yet struggled to receive proper care. It took several doctors, misdiagnoses, and months of debilitating symptoms before a gastroenterologist accurately diagnosed her with Crohn’s disease.
Her early experience was fraught with complications, including periods of remission followed by flare-ups. A trip to Mexico worsened her condition, leading to a severe C. difficile infection. Despite her family’s fears of Western medicine based on cultural mistrust and her father’s negative experience with steroids, Tina ultimately needed biologic medications and surgery. The conflict between her medical needs and her family’s cultural beliefs complicated her decision-making process. She underwent an emergency total proctocolectomy in 2008, which saved her life but resulted in her living with an ostomy bag. Her family was initially resistant, fearing that cultural stigma around ostomies would affect her ability to marry or participate in religious rituals.
Despite the cultural and personal challenges, Tina credits the ostomy with giving her a renewed quality of life. She later attempted a J-pouch surgery, but it failed, leading to six years of complications and additional surgeries. Eventually, she had the J-pouch removed and came to terms with her ostomy. This experience fueled her advocacy work, which focuses on educating others about IBD, the cultural stigma surrounding ostomies, and the importance of making informed treatment decisions.
Tina also emphasized the need for cultural competence in healthcare. She noted that patients from the South Asian community, in particular, face significant barriers due to cultural stigmas, which often delay treatment and cause emotional distress. This inspired her to raise awareness, destigmatize IBD, and ensure that both patients and physicians are better informed about these conditions. Through her advocacy, Tina aims to empower patients and encourage culturally sensitive care within the medical community.
Name: Tina A.
Diagnosis:
Crohn’s Disease
Symptoms:
Irritable bowel syndrome (IBS)
Gastroesophageal reflux disease (GERD)
Constipation
Red eyes (allergic conjunctivitis)
Joint pain
Weight loss
Frequent bowel movements with bleeding
Treatments:
Surgeries: Total proctocolectomy, permanent ileostomy, J-pouch surgery (later reversed due to complications), nearly two dozen additional surgeries related to Crohn’s complications
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), constipation, red eyes (allergic conjunctivitis), joint pain, weight loss, frequent bowel movements with bleeding Treatments: Surgeries (total proctocolectomy, permanent ileostomy, J-pouch which was later reversed due to complications, nearly two dozen additional surgeries related to Crohn’s complications)
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Maddee was diagnosed with stage 2 colon cancer in February 2023, following months of unusual symptoms that she initially attributed to other causes. She began experiencing significant fatigue and intermittent abdominal pain in December 2022, which she dismissed due to her active lifestyle. The symptoms escalated, including a burning sensation in her stomach, dizziness, and shortness of breath. Despite seeking medical advice, her condition was not immediately diagnosed, as initial assessments from urgent care and her gynecologist did not reveal the underlying issue.
The turning point came when a naturopath, who was evaluating her hormone levels, discovered she was severely anemic and suspected a slow internal bleed. This led to an expedited colonoscopy in February 2023, where a large tumor was discovered, too big for the scope to navigate. The doctor suspected Lynch syndrome, a genetic condition associated with a higher risk of colon cancer, especially given Madeline’s family history—her father had passed away from pancreatic cancer at the age of 47. Subsequent tests confirmed the presence of the tumor but fortunately showed that the cancer had not spread beyond the colon.
Surgery was scheduled quickly, during which about a foot of Maddee’s colon and 40 lymph nodes were removed. The procedure, though more invasive than initially expected due to the tumor’s size, was successful. Post-surgery, Maddee’s recovery was challenging, involving significant pain and the need for a blood transfusion. Despite some setbacks, including a slow return to physical activity, her resilience and proactive attitude helped her navigate these difficulties.
Maddee chose not to undergo chemotherapy, a decision influenced by her desire to avoid the side effects and protect her reproductive health. Her oncologist supported her choice, given that the cancer had not spread to her lymph nodes. She remains vigilant, undergoing regular blood tests and scans to monitor her health, and is aware of the potential for cancer recurrence due to her Lynch syndrome diagnosis.
Mentally, the experience has been taxing, and Maddee has relied on therapy to help manage the stress and anxiety associated with her diagnosis and recovery. She emphasizes the importance of self-advocacy, listening to one’s body, and enjoying life despite the uncertainties that come with a cancer diagnosis. Participating in clinical trials, Madeline hopes her experience will contribute to better understanding and treatments for younger colon cancer patients.
Name: Maddee M.
Age at Diagnosis:
35
Diagnosis:
Colon Cancer
Staging:
Stage 2 (borderline stage 3)
Symptoms:
Severe fatigue
Burning sensation in the stomach
Intermittent lower right abdominal pain
Dizziness
Shortness of breath
Difficulty walking up inclines
Anemia
Treatment:
Surgery: hemicolectomy & lymphadenectomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
CLL 360°: It’s Time for Treatment – Making the Right Decision for Me
Edited by: Katrina Villareal
The Patient Story Webinar – CLL 360°: It’s Time for Treatment – Making the Right Decision for Me
Hosted by The Patient Story
Learn how shared decision-making—a collaborative process where patients and doctors work together to make healthcare decisions—can help you navigate the rapidly evolving landscape of CLL treatment options and make informed decisions about your care.
Learn how shared treatment decision-making—a collaborative process where patients and doctors work together to make healthcare decisions—can help you navigate the rapidly evolving landscape of CLL treatment options.
Discover what shared decision-making means and how it can empower you in your treatment journey. Get insights into the latest advancements in CLL therapy and how to choose the best treatment plan for you. Learn how to weigh the potential benefits of treatment against its impact on your daily life. Gain strategies for discussing your preferences and concerns with your healthcare team.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Thank you to AbbVie for its support of our patient education program. The Patient Story retains full editorial control over all content
Stephanie Chuang: The goal of our program is for patients and care partners to walk away with a better understanding of how to approach decision-making with their medical team with all these options. There’s so much rapid change happening with continuous therapy and time-limited treatment. The ultimate question is: what is the best for you and or your loved one?
My name is Stephanie Chuang. I’m also a blood cancer patient advocate. I was diagnosed with non-Hodgkin lymphoma and that experience is how I decided to start The Patient Story, a platform that aims to help people navigate life before and after diagnosis in human terms. We do this through in-depth patient stories as well as educational discussions, which we know is especially important for those who are dealing with CLL and SLL wanting to empower themselves continuously throughout treatment.
We also want to give a shout-out to our friends over at The CLL Support Group on Facebook led by our friends, including our moderator Michele Nadeem-Baker. They offer ongoing virtual support for folks dealing with a CLL diagnosis.
Michele Nadeem-Baker, Patient Advocate
Michele Nadeem-Baker: I was diagnosed in 2012 and by the time I needed treatment, it was the end of 2015. I had a simple choice: standard of care or go on a clinical trial. I chose to join a clinical trial and luckily, it gave me part of the standard of care in combination with the future of treatment. I discussed all of this with my CLL specialist and we came to a shared decision for my treatment.
When I relapsed a few years ago, I had to make a decision once again. There were so many choices at that point, which was fantastic for patients but made it a little more difficult to make the decision.
Dr. Nicole Lamanna, Hematologist-Oncologist
Michele: Dr. Nicole Lamanna is the director of chronic lymphocytic leukemia and professor of medicine at Columbia University Medical Center. Dr. Lamanna, what drew you to specializing in CLL?
Dr. Nicole Lamanna: When I was a resident at NYU at Bellevue, we used to rotate at Memorial Sloan Kettering for our oncology experience. As an intern and then as a resident, they put me on the leukemia service every year.
When I became a third year, one of the leukemia docs kept in touch with me and said, “Nicole, what are you thinking about doing?” I was into taking care of the whole patient, so I said, “I’m going to be an internist or a primary care physician. I love taking care of every part of the patient.” He said, “Didn’t we do that on leukemia when you were in the inpatient unit? Don’t you remember we took care of infection, kidney failure, and heart attacks?”
The more I thought about it, the more I thought about applying to an oncology fellowship. Sure enough, that little push and having good mentors did that for me. I decided to apply for a fellowship and went to Sloan Kettering. While I did my fellowship, I did my research with one of the leukemia guys, was taken under their wing, and started working with a CLL mentor. I wouldn’t be doing this if it wasn’t for them. I give them lots of credit.
Dr. Charles Farber, Hematologist-Oncologist
Michele: Dr. Charles Farber is a board-certified oncologist and medical director of oncology research network development for Atlantic Health System. He also serves as a clinical assistant professor at Rutgers Cancer Institute of New Jersey. Dr. Farber, what drew you to specializing in CLL?
Dr. Charles Farber: When I was a college student, I was working in a laboratory and doing structural activity relationships. I got into an MD/PhD program at NYU and was slated to go there and start research with Eric Simon who coined the term endorphin.
Right before I got there, he moved to Columbia, so I had to find someone with a research interest that would overlap with mine. I looked at the faculty at NYU and Robert Silber was doing cutting-edge work in CLL. I ended up joining his laboratory and I’ve kept up my interest in CLL throughout my career.
Treatment Advances in CLL
Michele: Doctors, the world of CLL has changed tremendously with so many more treatment options. Dr. Lamanna, can you give us a summarized update on the current CLL treatment landscape and how it’s changed, especially in the last couple of years?
Dr. Lamanna: To allude to what Michele was saying, back in the day, we had chemoimmunotherapy regimens like fludarabine, cyclophosphamide, and rituximab or FCR, or bendamustine-rituximab intravenous therapies. These were standard of care. We didn’t have as many choices.
Now we have more of these targeted small molecule inhibitors. The two big classes we have are BTK or Bruton tyrosine kinase inhibitors and BCL2 inhibitors. These oral therapies have become the standard of care. Patients can either take a chronic therapy with one of these oral BTK inhibitors or you can get a time-limited approach with a BCL2 inhibitor.
The only one we have currently approved is venetoclax in combination with a CD20 monoclonal antibody, which is rituximab or obinutuzumab. We’ve moved away from chemotherapy and now people are on either BTK inhibitors or some sort of venetoclax-based therapy.
Shared decision-making is a collaborative process where patients—often with their family members—and their doctors sit down, communicate, and come up with a plan.
Dr. Charles Farber
What is Shared Treatment Decision-Making?
Michele: I’m extremely thankful for all of these new treatments, but this means choices, and choices mean decisions need to be made. Many patients are hearing the term shared decision-making. What does that mean?
It’s understood that doctors are the experts from a medical and clinical standpoint, and patients are the experts on themselves and what matters most. Dr. Farber, please explain in simple terms what shared decision-making means when it comes to treatment and what the process typically involves.
Dr. Farber: Shared decision-making is a collaborative process where patients—often with their family members—and their doctors sit down, communicate, and come up with a plan. It’s not limited to a choice of treatment or duration of treatment. With CLL in particular, most patients don’t need treatment, so we observe them. We do watchful waiting or as my patients refer to it, watchful worrying.
The first decision is what criteria need to be met before a treatment is offered. Then we discuss what treatment options are available, what are they, and what’s best for the particular patient. It’s individualized, so it relies on two-way communication where the doctor may have in mind what’s best for the patient, but the doctor doesn’t make the decisions for you.
We do share in the decision-making where it’s appropriate. It boils down to trying to communicate and impart important information to our patients and their loved ones to determine what’s best. It’s interactive. It’s a dialogue. The doctor with their experience and knowledge has to work with the patient with what they desire.
What Factors Guide Shared Decision-Making?
Michele: Dr. Lamanna, what factors guide you in making treatment decisions?
Dr. Lamanna: This has become more complicated and part of it is because shared decision-making has become more present because we have more options. When there was only one option, the choices were whether the patient was going to do treatment or not. With all these options, it becomes a conversation.
We do shared decision-making because these treatment options are slightly different… what may be relevant for them at this particular moment in their life may be different later on down the road.
Dr. Nicole Lamanna
We think about the genetics and the disease itself. What is going on with the patient? What are the features of their disease? Are their blood counts bad? Do they have big bulky lymph nodes? Do they have genetic features? Do they have chromosomal abnormalities? Do they have high-risk disease? You might hear about 17p deletion, TP53 mutation, or even multiple chromosomal abnormalities.
What other medical problems does the patient have? What other comorbidities do they have? How is their kidney function? What are their social circumstances? Can they get back and forth to the clinic or the hospital frequently or not? Do they need extra support? Are we looking at therapies that might be easier for that patient?
We take all of those into consideration and that’s where shared decision-making comes into play when we talk about either BTK inhibitors or venetoclax-based therapy. What are the choices in that person’s life at that particular time? Some people might have little kids and are busy and active, so they need something simple and not going to be too labor intensive. Other people may choose something different and go for more intensive therapy because they can put in the time.
We do shared decision-making because these treatment options are slightly different. They’re both great treatment options. Even though many people will wind up potentially using both of these options during their lifetime, what may be relevant for them at this particular moment in their life may be different later on down the road. That’ll come up again when you talk about relapse or needing more therapy.
Balancing Treatment and Quality of Life
Michele: Dr. Farber, quality of life is an important factor for all patients when considering treatment options. How do you balance the potential benefits of treatment with the impact on a patient’s daily life?
Dr. Farber: It’s a very complex equation. I saw a physician newly diagnosed with a low-grade lymphoma. I asked him if he was retired, about his personal life, and what he enjoys doing. He was with his wife and family. The wife interrupted and asked, “Why are you asking these questions?”
I told her it’s very relevant in terms of the big picture. What are the goals of treatment? What’s the lifestyle of the patient? What are they willing to tolerate? How temporary is the initial treatment? Is it a phase? Some of the medicines require more intensive monitoring before things get better, so the questions are very important.
Quality of life is a very important issue and one of the more important variables in the treatment equation.
Dr. Charles Farber
Quality of life is life. Whether someone is willing to sacrifice, people want to live longer and better, and what they’re willing and able to tolerate and for how long has to be assessed. It’s a very complex equation and with these many variables, it needs to be explored.
What are the goals of therapy? Is it to make you live longer? Is it to make you live better? What are we trying to achieve? What are the treatment options? What are the side effects? Quality of life is a very important issue and one of the more important variables in the treatment equation. Shared decision-making is critical where you can’t do for the patient what you think is important. It has to be a dialogue.
Michele: All this is music to my ears because when I was on frontline treatment, my quality of life wasn’t so great, but at that point, there were no choices. We are so fortunate to have these choices now and that we can have a better quality of life as CLL patients.
Approaches to Treatment
Michele: Dr. Lamanna, what are the potential advantages and disadvantages of a fixed-duration treatment versus a continuous treatment?
Dr. Lamanna: Both treatment options are great and because we have these excellent options, we talk about the logistics, the advantages and disadvantages of going for either approach, and then we align that with what’s going on with the patient at the time in their life.
Unless there’s something glaring, like a comorbidity or medical problem where I think one drug might be better than another, then I’ll still discuss both agents, but I’ll bring up my concerns and what I think they should do. You have these discussions and factor in what their wishes are.
We teach everybody that if you’re taking BTK inhibitors continuously, some of these nagging side effects can occur later because you’re taking this indefinitely unless you have a side effect or your disease progresses. The downside is you could have some uncomfortable side effects, like diarrhea, GI issues, cardiac issues, bleeding, and bruising.
The benefit of venetoclax-based combinations is that it’s time-limited. It’s very similar to what we used to do with chemoimmunotherapy where you’re getting a short duration of therapy and hopefully won’t need to be on treatment until many years down the road.
The downside is that it’s more labor-intensive in the beginning. There’s a lot of monitoring because your blood counts can fluctuate a little bit more commonly with the combination. Sometimes you need extra help.They might have dose modifications. There are different logistics with a time-limited approach that people have to be willing to commit to, but the advantage is you get a break from therapy.
I have both of these conversations with patients because it is rare to say that somebody is precluded from one regimen versus another and that’s why most patients have an option. There might be some circumstances based on comorbidity, cytogenetics, or other issues that I’m concerned about with where I might recommend one approach versus another, but we have that dialogue.
Michele Baker: Dr. Farber, is your approach different and if so, how?
Dr. Farber: No, it’s very much in line with Dr. Lamanna’s. I would echo what she said that BTK inhibitors are very easy to start and hard to continue whereas the BCL2 inhibitor venetoclax is very cumbersome to start and requires a lot of initial monitoring. The patient has to come in very frequently for lab work and hydration as we’re ramping up, but it’s easy to continue.
Treatment has to be individualized. There may not be a perfect treatment, but one clearly may be better than another.
Dr. Charles Farber
With ongoing treatment versus finite treatment, the majority of people would like to be treated with finite therapy for one or two years, but that’s not for everyone. It’s a little counterintuitive, but some people feel very comfortable being treated with ongoing therapy because they feel like they’re proactively being monitored and treated.
A lot of people panic when it comes to the end of the year or two years on venetoclax and they become concerned about what we’re going to do next. It’s not broken. Why do we want to fix this? What’s wrong with continuing with venetoclax?
Shared treatment decision-making is individualized. Comorbidities, age, and ability to come in frequently in those first few weeks may dampen my enthusiasm for venetoclax in certain individuals. If they’re on an anticoagulant or blood thinner, I worry about that with BTK inhibitors.
It’s truly a situation where the treatment has to be individualized. There may not be a perfect treatment, but one clearly may be better than another. There’s a lot of information. CLL patients tend to be older and have comorbidities, so Michele, you are quite the exception. But you do the best you can. It requires a lot of patience, but it’s very gratifying.
We’ve had amazing treatments historically. If you look back 10 or 15 years ago, it was prehistoric, particularly for patients at higher risk with unmutated, immunoglobulin-heavy chains or TP53. We had no treatment until the advent of ibrutinib. It’s a very gratifying time to be in practice where we have options and we can talk to patients about what may be better for them.
Bridging the Gap: When Patients and Doctors Disagree on Treatment
Michele: What happens when a patient and their doctor have differing views on a treatment plan’s next steps? What do you do?
Dr. Farber: To some degree, the patient’s always right. If you feel they’re taking a misstep and if it’s not a horrible misstep, you voice your concern. If it’s something terrible to you, tell them you’re not willing to do it or perhaps they should seek an additional opinion. You try to resolve it.
The C in CLL is chronic. If they want to take ivermectin or something unproven, you try to educate them. You try to intellectualize. But it could be difficult because some patients get an idea and it may not be a good idea, but they feel very strongly about it.
If it’s something you’re uncomfortable doing, you can try to excuse yourself and offer a second opinion. It could be challenging and some patients get offended when you don’t do exactly what they’d like you to do. They could come at you with something from Dr. Google that isn’t necessarily appropriate. You have to be calm and try to explain the rationale for why you think it may not be a great idea.
Michele: What you would say to someone exactly if they brought up ivermectin?
Dr. Farber: I tell them that there have been anecdotal reports of patients doing well with various diseases, but that’s not scientific and doesn’t prove that ivermectin is effective in a given setting. I explain about randomized prospective trials. The best way that this is done scientifically is to take a group of patients and divide them into two or more groups. One group is treated with the test agent and the other is treated with standard therapy, placebo, or under observation. The true scientific way is if the group that gets ivermectin does better, lives longer, has a better quality of life, and has objective improvements in their labs or radiographs, that is scientific.
Sometimes in CLL and other diseases, there are spontaneous remission improvements. Single cases of patients getting better is akin to snake oil where someone comes up and endorses a treatment. That’s what I would I would try to explain. I try to explain that individuals getting better on ivermectin is not akin to a randomized prospective trial showing clinical benefit.
Michele: You’re very polite with your explanation and what you would say to someone about ivermectin. I appreciate that. Dr. Lamanna, what would you do if you and a patient disagree about what their treatment plan will be and their next steps?
Dr. Lamanna: To be fair, it is a dialogue. I’ve been fortunate that there aren’t many patients who I’ve had real troubles with. Thankfully, many patients either want to hear the whole discussion or read and bring up their questions with me and that helps the dialogue because you hear where they’re coming from.
If people bring up things that are completely not standard of care, then I have a discussion with them on the standard of care and about supplements or alternative medicines and how to integrate those into current practices or therapies that might be needed for their leukemia.
If somebody doesn’t want to take any standard of care treatment, then I’m probably the wrong person for them. It’s not difficult to have that conversation because either the patient is a right fit and doesn’t want to have anything, is afraid to take any kind of standard of care therapy for CLL, and that’s very easy to have the discussion and see where they want to take that.
Another conversation is when people get multiple opinions from different doctors. We see patients who talk about different therapies and they’re usually talking about all the standard of care therapies. The discussion now shifts to treatment sequencing. Should they do this one first or that one first?
Another discussion is talking about the different clinical trials and that’s great because that’s an open dialogue and right up my alley. I’m happy to talk about any of that, share my knowledge and expertise, and come to a mutual agreement if they want to do one or another, whether with me or someone else. I’ve never had too many difficulties where we’ve disagreed or where it’s been not approachable. It’s something that we have a conversation about.
You want to partner with a doctor and a team that fits you. I may not be the right person for that person all the time and that’s okay. I respect that.
Dr. Nicole Lamanna
I always say to patients that because CLL is a journey, you need to find somebody that you feel comfortable partnering with. That may not be me and that’s okay. It’s a long journey and they’re with you for a lifetime. You hope that they’re with you for 20-plus years or more. Hopefully, they will have a normal lifespan. That’s what we’re shooting for with all our research. You want to partner with a doctor and a team that fits you. I may not be the right person for that person all the time and that’s okay. I respect that.
Michele: It’s a long-term relationship and it’s important that you and your doctor gel. I always say it’s almost like dating, trying to figure out who’s right. My relationship with my CLL specialist is probably one of the longest I’ve had; not quite as long as with my husband but almost.
Beyond Initial (Frontline) Treatment
Michele: Let’s move forward to second-line and third-line therapy. Dr. Lamanna, what factors do you consider? Are they different when selecting a second-line therapy and planning for future treatment options?
Dr. Lamanna: This is a journey. Although most patients are focused on their first treatment and what they’re getting at that moment, I’m always thinking about their next lines. The goal is to try to think ahead.
What they got in the frontline and what their response duration was to that therapy will play a role in what they’re going to be recommended in the second or third line.
Dr. Nicole Lamanna
In the second or third line, you consider several factors. What did they get in the frontline? Have the genetics of their disease changed? Were they once a favorable risk and now changed to 17p deletion or TP53 mutation? How did they tolerate their first regimen? Do they have new comorbidities or new medications that we have to be concerned about? What they got in the frontline and what their response duration was to that therapy will play a role in what they’re going to be recommended in the second or third line.
If they got a time-limited approach with a venetoclax-based regimen, like venetoclax-obinutuzumab, how long did that last? Was it short? Was it long? Did they tolerate the regimen? Is that something we can reconsider? If they were on a BTK inhibitor for their frontline treatment, then we’re not going to offer them another covalent because most people at this point have gotten covalent BTK inhibitors in the frontline.
How to sequence these drugs is still being evaluated. The point is it’s important to know what they had for frontline therapy.
Dr. Nicole Lamanna
If they’re continuously taking a medicine, you’re not going to switch them to the same class of covalent BTK inhibitor. You’ll likely go to a venetoclax-based regimen. We have a non-covalent BTK inhibitor, pirtobrutinib, which recently got approved. How to sequence these drugs is still being evaluated.
The point is it’s important to know what had for frontline therapy, whether their genetics changed, if they have any new comorbidity, what their response was, and if they had any major side effects. All of those play a role in determining second and third-line therapy.
The Role of Genetics in CLL
Michele: Dr. Farber, this is something that CLL patients are always asking. I had my test when I was first diagnosed and this is what it showed, but now they’re showing something else. What happens to our genetics? Is it from treatment?
Dr. Farber: Yes, genetics can change. If you look at newly diagnosed patients who’ve never been treated, perhaps 5% or 7% will have a TP53 mutation or 17p deletion whereas if you look at populations of patients who were very heavily treated, particularly with chemotherapy drugs, up to 50% of those patients will have the dreaded TP53 mutation or 17p deletion.
If a patient needs a new line of treatment or is having progressive disease, if they haven’t had genetic testing, they should be checked
Dr. Charles Farber
By treating, you do one of several things. You can introduce new mutations or at least select a population of cells that have that mutation. What’s very important is if a patient needs a new line of treatment or is having progressive disease, if they haven’t had genetic testing, they should be checked again because there may be something emerging that was not there or not recognized earlier. There are a variety of different assays used, like FISH and next-generation sequencing.
It’s not the same biology through the course of the disease in a given patient. It can sincerely change in part through treatment and that’s one of the reasons in general that we tend to try not to treat patients until they need treatment. The International Workshop on Chronic Lymphocytic Leukemia (iwCLL) has criteria for who needs treatment and not everyone needs treatment.
They say there’s no benefit to treating early. I would take it a step further. There may be a detriment to treating a patient before they need treatment. It’s like shooting off your ammunition before the war begins. Some are seldom accused of starting treatment before an individual needs treatment. If a patient hasn’t had a genetic profile of their disease done in recent times and they progress, they should be checked out again.
Key Takeaways
Michele: What is your advice to patients? How can they most effectively advocate for themselves and have shared treatment decision-making conversations with their doctors, especially when they’re so overwhelmed with the amount of information they’re getting? How can they advocate for themselves when their doctor is not looking at newer therapies, like if they’re in a rural community and don’t have that advantage?
Dr. Farber: The patient needs to bring their spouse, a relative, or a loved one to review what the doctor’s saying at one of these critical junctures. It’s important to write things down.
When all is said and done, the patient can come up with a little chart where they can see the pros and cons of a treatment. You might have one for each different treatment being offered to you. Listen carefully to the doctor.
Come up with very focused questions. Write things down before you go in rather than having a free-for-all discussion.
Dr. Charles Farber
Ask their opinion. What do you think? Do you think one is better than the other? Do you think they’re equivalent? What aspects of one treatment would be better than another treatment? What aspects would be inferior? Are there any nuances to my current medical state that might make one treatment better than another? Come up with very focused questions.
Write things down before you go in rather than having a free-for-all discussion. Back in the day, we didn’t have options. There was one best treatment and we could change the dosing and the schedule to try and finesse it, but now we have different options. We have different agents within a given class. The doctor and the patient must come up with a good plan for the individual.
Dr. Lamanna: It’s often good for patients to bring somebody to their appointments because it’s hard to hear everything with one set of ears. Sometimes what the patient might be focusing on is different from what their loved one or friend might be. They may hear other aspects of the conversation.
The beauty of CLL compared to other cancers is we can have multiple conversations when we’re gearing somebody up for treatment. I often encourage them to write down questions and bring them to their next visit or message us. Thankfully, we have the leeway and flexibility of doing this at multiple sessions to try to answer their questions more thoroughly. That’s very rare. That’s not to say it never happens in CLL because sometimes it happens, but often, you have that luxury of time.
Thankfully, we have the leeway and flexibility of doing this at multiple sessions to try to answer their questions more thoroughly.
Dr. Nicole Lamanna
We also try to set up educational visits to go over the drugs and their side effects. There are a lot of good support groups for CLL where they can go over questions. I hook patients up early when I first meet them. I give them a book from The LLS talking about CLL and then I give them websites that they can visit. I say to patients that not everybody’s ready to go online and look at their disease. Dr. Google can be a problem, but for those who want to, I want them to go to reputable sites that talk about the disease.
Conclusion
Michele: This has been wonderful. I’ve learned so much from you. Thank you, doctors, for your devotion and dedication to helping CLL and SLL patients. We all better understand shared treatment decision-making and how important it is in our journeys.
Stephanie: Thank you so much, Michele. Thank you to Dr. Lamanna and Dr. Farber for all the work that you are doing with your patients and patients everywhere in CLL and SLL. It’s so important to be empowered again, especially in the space of this disease, which requires a lot of engagement and understanding because there’s so much rapid development happening with different therapies.
I hope that you learned something from the program, that it spurred some thoughts, and that you can walk away with some actionable items on your list of things to do. We hope to see you at a future program. Take good care.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Jeff, diagnosed with stage 4 stomach cancer (gastric adenocarcinoma), reflects on his battle with a rare form of stomach cancer that was discovered incidentally during his attempt to donate a kidney in 2022. As a molecular biologist, he finds himself in a unique position of understanding the scientific aspects of cancer and personally enduring its effects. Although initially symptom-free, Jeff’s cancer was particularly challenging to detect due to a previous gastric bypass surgery. The cancer, a diffuse tumor type, spread silently and avoided detection through routine tests like gastroscopy and CT scans.
During his medical evaluation, a kidney tumor was also identified, leading to surgery that removed the kidney and the stomach tumors. Initially, there was hope that surgery alone might suffice, but when the true nature of his cancer was discovered, the treatment plan shifted. Jeff underwent chemotherapy with oxaliplatin and capecitabine, followed by radiation therapy. Despite these efforts, the cancer persisted, leading to a prognosis where the focus is now on palliative care rather than curative treatment.
Jeff candidly discusses the physical and emotional toll of his treatments. Radiation caused severe fatigue and potential long-term complications, while chemotherapy led to painful neuropathy, making even everyday tasks challenging. Despite these hardships, Jeff remains focused on living purposefully, continuing his work, and cherishing time with his family.
Jeff also warns against the lure of unproven alternative treatments, urging fellow patients to rely on evidence-based medicine. His outlook is grounded in realism, acknowledging the limitations of current treatments while still finding value in the time they can offer.
Mentally, Jeff struggles with the uncertainty of his condition but tries to find meaning in the time he has left. He emphasizes the importance of kindness, especially as he reflects on his legacy and the message he wants to leave for his children. His story is not just about fighting cancer but about living a meaningful life despite its challenges.
Name: Jeff S.
Diagnosis:
Stomach Cancer
Staging:
Stage 4
Symptoms:
None; found during the evaluation process for kidney donation
Treatments:
Surgery: Gastrectomy & partial nephrectomy
Chemotherapy: oxaliplatin & Xeloda (capecitabine)
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: None; found during the evaluation process for kidney donation Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation
...
Initial Symptoms: Choking suddenly while eating and attempting to speak; neck and right shoulder pain; neck tightness; trouble swallowing certain food items Treatment: Surgery (subtotal gastrectomy, D1 lymphadenectomy, gastric bypass)...
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Chasity was diagnosed with stage 1 uterine cancer in 2022 after a decade of persistent symptoms that were initially misdiagnosed as perimenopause. Her story reflects the challenges of navigating a complex healthcare system while advocating for her health.
Chasity’s symptoms began in 2012 with irregular bleeding, which was initially attributed to perimenopause and ovarian cysts. Despite undergoing multiple diagnostic procedures, including D&Cs, saline sonograms, and endometrial biopsies, her symptoms persisted without a clear diagnosis. She experienced heavy bleeding, severe anemia, and fatigue, yet her doctors repeatedly dismissed these as common symptoms of perimenopause.
Chasity’s condition worsened over the years. The heavy bleeding became so severe that she passed large clots and required weekly iron infusions due to dangerously low hemoglobin levels. Despite her worsening condition, her OB/GYN continued to attribute her symptoms to perimenopause, advising her to take Provera, a hormonal medication that caused her additional side effects.
Frustrated by the lack of answers, Chasity sought a second opinion from another OB/GYN who, concerned about her symptoms, recommended another endometrial biopsy. This biopsy finally revealed the presence of endometrial carcinoma in her uterus. Upon receiving the diagnosis, Chasity felt a mix of shock and fear, questioning whether the cancer had spread due to the length of time she had been experiencing symptoms.
Her treatment involved a full hysterectomy, including the removal of her ovaries and some lymph nodes to check for metastasis, and a pelvic wash. Fortunately, the cancer was contained within her uterus, and she was diagnosed with stage 1A uterine cancer. Despite being relieved that she wouldn’t need chemotherapy or radiation, Chasity faced a challenging recovery from the surgery due to complications.
After returning home, Chasity struggled with severe surgical menopause symptoms, including night sweats, joint pain, abdominal pain, and heightened anxiety. These symptoms were so intense that she began to question whether removing her ovaries was the right decision. In addition to her cancer diagnosis, Chasity was also diagnosed with primary hyperparathyroidism, which likely contributed to her difficult recovery.
Throughout her experience, Chasity emphasized the importance of trusting one’s intuition, seeking second opinions, and being persistent when something feels wrong. Her story is a powerful reminder for women to advocate for their health, be aware of symptoms, and prioritize their well-being.
Name: Chasity J..
Age at Diagnosis:
50
Diagnosis:
Uterine Cancer
Staging:
1A
Symptoms:
Irregular bleeding that progressed to heavy bleeding with large clots
Severe anemia
Exhaustion
Treatment:
Surgery: full hysterectomy, including ovaries and some lymph nodes
Pelvic wash
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Lauren was diagnosed with invasive ductal carcinoma breast cancer after discovering a lump in her right breast during a self-exam. Her doctor quickly referred her to radiology where she underwent an ultrasound and biopsy. Initially, a sentinel lymph node biopsy came back negative, suggesting that the cancer hadn’t spread.
This led to a decision to proceed with a lumpectomy, during which doctors also removed several lymph nodes for testing. Unfortunately, one of the lymph nodes tested positive for cancer, leading to a second surgery to remove more tissue. Lauren’s treatment plan included multiple rounds of chemotherapy and 25 rounds of radiation. Going through treatment opened up unexpected opportunities for introspection and gave her the space to evaluate various aspects of her life.
Throughout her ordeal, Lauren struggled to accept her diagnosis, but she maintained a positive outlook and sought to embrace the situation as part of life’s many experiences, emphasizing personal growth during tough times. The hardest part for her was breaking the news to her two children. They supported her through every step and the experience brought them closer together. She also embraced therapy, which helped her reflect on her life priorities.
Her diagnosis forced her to slow down and reexamine her values, leading to a shift toward a more balanced lifestyle. As she moves into survivorship, Lauren aims to maintain this balance, learning the importance of saying no, managing her time, and avoiding unnecessary stress. She continues to advocate for women with breast cancer, using her platform to raise awareness and inspire others. She sees cancer not as an end but as an opportunity for a new beginning.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Dee was diagnosed with stage 3 invasive ductal carcinoma (IDC) and ductal carcinoma in situ (DCIS) at 31, which later progressed to stage 4 metastatic breast cancer. Her initial symptoms began in 2017 when she experienced pain in her left breast while breastfeeding, followed by the discovery of a large lump. Despite persistent pain, she was initially dismissed by doctors due to her age and the assumption that breast pain was not a sign of cancer. After advocating for herself and undergoing an ultrasound through a private hospital, she was finally diagnosed.
Dee underwent a challenging treatment plan, starting with neoadjuvant chemotherapy (AC-T), a bilateral mastectomy, and radiotherapy. She experienced severe side effects, such as radiation burns and a painful capsular contracture around the implant. During her treatment, Dee struggled with identity loss and was later diagnosed with PTSD. She tried to return to normalcy too quickly, which led to further health complications, including pneumonia and hospitalization.
Despite setbacks, Dee rebuilt her life, focusing on her mental health and making significant lifestyle changes. In 2023, Dee learned her cancer had metastasized to her bones. However, she maintained a positive mindset and adapted well to new treatments, including targeted therapy with ribociclib. Dee continues to embrace life fully, cherishing time with her children and finding support through an online cancer community.
Name: Dee D.
Diagnosis:
Breast Cancer
Invasive ductal carcinoma (IDC)
Ductal carcinoma in situ (DCIS)
ER+
Staging:
Stage 4
Symptoms:
Inability to produce milk on the left breast while breastfeeding
Breast pain (palpable and radiating to the back)
Lumps in the breast and armpit
Treatments:
Chemotherapy: AC-T
Surgery: bilateral mastectomy and axillary lymph node clearance
Radiotherapy
Hormone therapy: Zoladex (goserelin)
Aromatase inhibitor: letrozole
Targeted therapy: Kisqali (ribociclib)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Michelle’s experience with recurrent stage 1 bladder cancer started with intermittent blood in her urine, which led to multiple urgent care visits, where she was initially misdiagnosed, and eventually a diagnosis of papillary urothelial carcinoma. Upon diagnosis, she underwent TURBT surgery to remove the tumor and then chemotherapy.
Despite multiple rounds of chemotherapy, Michelle’s cancer recurs within three to six months after stopping treatment. Her doctor suggests ongoing monthly maintenance chemotherapy, but she negotiates for less frequent sessions due to the harsh side effects. She became vigilant about recognizing symptoms of recurrence, helping her manage the chronic nature of her cancer.
Facing the possibility of losing her bladder, she expresses a preference for an Indiana pouch, influenced by her friend’s experience and her desire for a better quality of life. She has already undergone surgery to improve her chances of adapting to the Indiana pouch, demonstrating her proactive approach to managing her health.
Michelle emphasizes the importance of self-advocacy in medical care, seeking multiple opinions, and making informed decisions. She acknowledges the emotional toll of living with cancer and stresses the importance of mental health care and self-care.
Name: Michelle R.
Age at Diagnosis:
43
Diagnosis:
Bladder Cancer
Staging:
Stage 1
Symptoms:
Irregular occurrences of seeing streaks of blood in urine
Specific type of pain when bladder is full
Unexplained weight loss
Urinary urgency
Malaise
Fatigue
Treatments:
Chemotherapy: gemcitabine
Surgery: transurethral resection of bladder tumor (TURBT)
Thank you to Johnson & Johnson for its support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I had been experiencing some streaks of blood in my urine… It was very random and not consistent at all.
Introduction
I live near Atlanta, Georgia. I’m a mother to an adult son and an auntie to my nieces and nephews. I have two brothers and a sister. I’m a genetic genealogist. If I’m not working my full-time job, I’m working my side business, Bless Your Vibes LLC.
I have recurrent stage 1 non-muscle-invasive bladder cancer (NMIBC). I’ve had nine recurrences, countless surgeries, and chemotherapy. As long as I catch it before it invades the muscle, I’ve been told I can deal with this for the rest of my life.
Pre-diagnosis
Initial Symptoms
I had been experiencing some streaks of blood in my urine. It would happen for a day or two and then nothing for a month, and then it would happen again. It was very random and not consistent at all. I already had a hysterectomy several years prior, so I knew it wasn’t related to that. I didn’t have any pain nor symptoms of a urinary tract infection, so I immediately thought about kidney stones.
Going to Urgent Care
When I went to urgent care, they did a culture and said, “You don’t have any infection, so it’s probably kidney stones. We’re going to give you antibiotics and send you on your way.” I went to urgent care a total of four times from June 2017 to February 2018.
She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding.’
The last time, I did a televisit. I knew they were going to give me antibiotics because it was the same old story, so I planned to call them during my lunch break. The doctor I spoke with during my televisit was more thorough than any other doctor I’ve ever had in my life.
She asked me questions and didn’t allude to any infection or kidney stones. She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding. Don’t say ‘blood without pain.’” She stressed that to me for whatever reason.
Seeing a Urologist
The urologist still didn’t indicate anything. They said, “We’ll try to figure out what’s going on.” I had a CT scan and some urine tests, but that was about it.
Diagnosis
Getting the Diagnosis
The urine test results came back through my patient portal and said I was positive for papillary urothelial carcinoma. I knew what carcinoma was, but I didn’t know what papillary urothelial meant. I panicked. It was Friday afternoon and everybody’s gone. The only person I told was my boss at work because I had to leave early.
First thing on Monday morning, I called the office and left a message. They called back and said, “We can’t tell you anything. You need to come in to see the doctor.” I couldn’t go in until later that week, so I had to sit with it for a whole week.
When I went in, the doctor was so matter-of-fact and cold. He started talking about treatment. I said, “Stop. Do I have cancer?” He looked at me like I should already know. I was numb. He said, “Based on the CT scan, it looks like there’s a large mass. Normally, we would go in with a scope and then proceed with surgery. But since we know that it’s cancer, can we bypass the scope and go into surgery?” I said yes because I wanted this out of me, so he scheduled it for two weeks after.
I had one friend… She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me.
Treatment
Discussing the Treatment Plan
With bladder cancer, you have high-grade or low-grade, muscle-invasive or non-muscle-invasive. My doctor pulled out a treatment chart and it showed everything. It was pretty clear-cut. It showed the schedule of treatment, which starts from removal or transurethral removal of bladder tumor (TURBT), and then it goes through the surgeries and the types of chemotherapy.
Preparing for Surgery
I remember trying to prepare myself. I was freaking out because up until the night before, I had no ride to my surgery. My son didn’t have his license yet and all of my friends worked. I didn’t have any family to help. I literally had no one. I started calling people that I casually knew and nobody stepped up.
Then I had one friend who I called and I was telling her about it when she said, “Why didn’t you ask me?” I didn’t even think about it because she’s disabled and she turned out to be the one who would step up. She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me. It humbled me. I didn’t even know then all the friendships that I was about to lose over this, but from back home, she’s the only friend I have left. I’ve lost all of them.
I went into surgery and at the time, I felt like I had a lot of people depending on me, so I told the doctor, “I’m not just another patient. Treat me well. Do me right because I have a lot of people who depend on me.” I felt he was offended by that because he said, “I treat all my patients the same.” He was very dry.
I asked, “What’s the best-case and worst-case scenario?” He said, “Best-case scenario is I get it all, you go home today, and you rest. Worst-case scenario is you wake up and have a bladder bag.” He told me this right before going in and I was in complete shock. I couldn’t do anything else but pray.
I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me.
Surgery
After surgery, my friend was the first person to greet me coming out. She was in the recovery room and as I was waking up, I felt that he got it all and I was going home. I believed it in my head. After I got more coherent, I asked the nurse, “Did he get it all?” And she said yes.
I went home to recover, took the next day off, and went back to work the following day. It was like I had cancer and then I didn’t have cancer in that short time. I didn’t know at the time that it was going to happen nine more times over 6 ½ years.
One of the first things this doctor told me was, “I have patients who have been coming to me for 20 years. I go in and get it out, and they go about their way for 20 years.” At first, I was upset that he said that, but later, I was glad because that prepared me. He indicated that it was going to be normal to keep coming back.
Not every case is chronic, but I like to know things because I like to be prepared. It helped me put it into my head that I’m going to have to deal with this. On one hand, it helps me. But on the other hand, I don’t feel like I’ll ever have that winning moment. It’s going to be a lifetime thing to deal with.
Recurrence
I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me. It looked like a succulent flower because it was so tiny and had little shoots. I’m lying there looking at the screen, thinking, “How could something so beautiful be so deadly?” Then he said, “We can take care of this right now.”
I asked him, “What does this entail?” He said, “We pluck it off.” Then through the screen, I saw this little grabber thing come through and he plucks it. It was very surreal. You go from cancer to no cancer because once that’s gone, you have no evidence of disease.
If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.
Moving to Atlanta
I was moving from Ohio to Atlanta, so I asked him what I needed to do. He said, “Come see me one more time before you go.” I did that and I was clear, so I was okay.
I started searching for the top urologists, top oncologists, and the hospital networks in the area. I did a lot of research and called some of the hospitals, which included Emory because they were in my insurance network. I asked, “If you had a serious problem with your bladder and you needed a urologist, who would you go to?” They told me about this doctor and as soon as I connected with the office, it was so different.
This doctor is a urologic oncologist and supposedly the best in the network. I explained my situation and gave my brother’s address since I didn’t have my new address yet. They emailed me papers and everything. There was such an urgency to be seen and that made me feel very comfortable and that I would be taken care of.
When I went, they said, “We’re not even going to have a consultation. We’re going right into cystoscopy. I want to see what’s going on there.” I’m glad they did because that was my fourth growth and it had taken off. It was very large and from the pathology report, it was high-grade.
After that scope, they said, “We’re going to do the surgery and we’re going to do your chemo,” so I did that.
During my follow-up, I didn’t see the doctor, but I saw someone else from his team. I had been taking cues from my first doctor that it wasn’t a big deal. She was the first one who looked me in the face and said, “Do not put this off because you can die from this,” and that was the first time anybody said that I could actually die from this.
Up until then, it was very casual. From that point on, I took everything very seriously. If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.
There are specific symptoms that I now recognize when I have active cancer.
Being Aware of Symptoms of Recurrence
I’ve had this nine times now, so I’ve paid attention to my body and my symptoms, and I started recognizing patterns. When I have active growth, there is a very specific pain that I feel in the morning when my bladder is full. Once I empty it, the pain goes away. When I feel that, I know I have a growth.
I’m a plus-sized person. I’m fairly large. But before I was diagnosed, I lost a lot of weight. I lost 60 lbs and that was one of my other symptoms before I was actually diagnosed. I had unexplained weight loss and I had been trying to lose weight my whole life.
Then I have a lot of sense of urgency to go to the bathroom, like when you have a UTI. I can’t wait for too long because the fuller my bladder, the more it hurts. Then I have a general feeling of unwell and being tired a lot. There are specific symptoms that I now recognize when I have active cancer.
One time, I was having bad pain in the morning. I had a cystoscopy not even a month prior and he said, “It’s probably because you’re still healing.” I said, “No, something’s going on.” He got me in and sure enough, it was another growth. This doctor trusts that I know my body and he’s fully on my team.
Maintenance Chemotherapy
For the last recurrence, we know that chemo worked. I got chemo for a whole year and didn’t have any growth, but when I stopped, I had another growth within three to six months, so I had to have another surgery and chemo.
I told him that it seems my growths occur between the three- and six-month mark, so he wants to introduce another chemo to mix with the original one I was taking and do monthly maintenance chemo probably for the rest of my life. I’m not down for that, so I said, “That’s hard on me. What if we go every two or three months?” That’s not even what the board recommends, but he’s willing to consider it.
He said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.
Side Effects of Chemotherapy
The chemotherapy drugs are all different. I get nauseous, but I don’t get sick. I have a little thinning of my hair, but I don’t go bald. I feel overall icky and tired. I go through hot and cold flashes, low-grade fevers, and night sweats. Those last probably about five days before I start to feel a little bit better. But when I went for the whole year, the longer I was doing it, the worse I felt every month.
It started like I was having aphasia or problems with recalling certain words. My memory wasn’t as good. I was having trouble concentrating and trying to process things. It was more complicated. I still have that problem where I trip on my words sometimes. It got progressively worse the longer I was doing chemo.
Taking a Chemo Break
I was supposed to do it until the end of the year, but I asked him, “Can I take a break for a month?” Since I had the six-week course before the monthly sessions, he said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.
It’s going to be a cat and mouse game, and the end result is a ticking time bomb. I’m going to do whatever I can to avoid losing my bladder and as long as I can tolerate the chemo. If it gets to the point where I can no longer take it, then I’ll probably have my bladder removed. There aren’t very many options for that.
Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that.
Facing the Possibility of Losing Her Bladder
There’s only one option that I would like. My best friend had urethral cancer, a rare form of it, and she got an Indiana pouch and that to me is the most tolerable. I don’t want to live with a bladder bag. It’s a decision I made before I met her. The only options I knew of were a neobladder or ileostomy bag, and I didn’t like either of those options because if the neobladder doesn’t work, then all you have is the bag.
I’m older and my child is grown and independent. I’ve suffered a variety of things throughout my life. I’m a chronic pain patient and with where I’m at in my life, I didn’t want to suffer, so I made the decision. Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that, and that was hard for other people.
I didn’t really talk about it, but I mentioned to people close to me, “Spend time with me now.” I didn’t come right out and say it, but I would drop hints. Then I met my friend and she showed me that and for the first time, I actually had hope that I could live with this little pouch and do the catheter. I could deal with that. Now that’s where I’m at. If I have to lose my bladder, I want the Indiana pouch.
When I was first diagnosed, I was fortunate to get involved with a cancer support center in my old town. I started going to support groups and would see there was only one other person with bladder cancer and he had a bag. He was pretty matter of fact about it and he was happy. He didn’t go through what I did, but his was found at a later stage.
You could tell which ones had a good support system and which ones didn’t. The ones who had a good support system wanted to fight and they fought until the very end.
At the time, I thought I had a good support system, so I was ready to fight. There was a woman who came in who had been diagnosed with stage 4 and it looked like there was no hope for her, but she had such a good support system. Her decision was to not do any treatment. She was going to live the rest of her days.
I remember that meeting because that’s where we got into quality versus quantity. She said, “Why would I prolong my life with the extra time I have being miserable, rather than have a shorter life and be absolutely happy and at peace with it?” That hit me so deeply because I wasn’t even nowhere near where she was as far as stage, but it put in my head that if I ever get to that point, that’s what I would do. It allowed me to process those choices and come to terms with it.
I knew people wouldn’t understand that. Even to this day, when I talk about it, people would say, “Why would you even think like that?” And these are people with cancer. You’re not me. You’re not going through what I do.
Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.
Shared Treatment Decision-Making
My doctor is still pretty dry, but I’ve grown to appreciate him. I had a different surgery a few years ago and prior to that surgery, I let him know right away, “I’ll do whatever I need to do to keep my bladder, but if it comes down to losing my bladder, I will pass. I want you to know that’s where I’m at.” He respected that and said, “I’ll do whatever you want.” I appreciated that for a variety of reasons. He must have written it in my file, so he knows that when I come in, we have the surgery and then chemo. It’s become routine now.
When I had the high-grade recurrence, it got to the point where we weren’t sure and I was scared. I had met my friend by then and brought it up to him. I said, “Can I do the Indiana pouch if I have to lose my bladder?” He said, “Let me see your abdomen.” At the time, I had a B belly, so my waist dipped in and right where the crease was is where the stoma would be. I asked, “How would that work?” He said, “It probably wouldn’t.”
I had this discussion with him. My concern was if I had a bladder bag, every time I moved, bent over, or sat, it would fold over on itself, so it would pinch off the flow. The stickers for the bag wouldn’t stick. I would then have a higher risk for infection and leaks. It solidified why I wasn’t going to live with a bladder bag.
I thought about it and said, “What if I got a tummy tuck to smooth that out?” I’m a bariatric patient too and I had lost some weight. He felt around and said, “If you could get this smoother, I think you would have a better chance,” so I started on that journey to get that done.
I had a panniculectomy, so now I have a big round D belly and I’m comfortable with the fact that if I had an ileostomy bag, I wouldn’t crease anywhere. But then I met my friend and that made me feel even better. Now that I’ve had the surgery, I could live with that. It was important that I had that discussion with my doctor because if he blew me off, then I wouldn’t have made that decision.
At my last visit, I brought up that I’m coming up to seven years. He said, “If you want to remove your bladder, we can do that, but I don’t think you’re there yet. This is all superficial, but I understand that if the chemo’s getting to be too much and doing all this is too much, we can do that. But I remember what your decision was initially.” Whatever I decide, he’s comfortable with it.
Where we left off was, I have to let him know whether we’re going to introduce this other chemo and try a few rounds every three months to see if that keeps it away. I can live with that and that’ll buy me a little bit more time. Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.
Importance of Self-Advocacy
Self-advocacy is absolutely critical. I talk about it on my social media and I have a lot of women sending me messages, not very many men, but I tell them that this doesn’t have to be a death sentence. It’s a health challenge, especially if you have the type that I have.
You have to advocate for yourself and understand what’s going on with you. Ask your doctor. Don’t feel like you’re putting him off. If he or she’s brushing you off, find another doctor. Get those answers and make those decisions.
Don’t let any doctor gaslight you. I’m a big proponent of that. I don’t think I would’ve been like this if it wasn’t for all the other experiences I’ve gone through in my life. It brought me to this point where I can advocate for myself and others.
A lot of people I talk to don’t know how to advocate for themselves. I’ve seen five oncologists, two different ones in the same week. There’s nothing out there that says you can’t go to another doctor. You have to fight for yourself and speak up for yourself.
Handling the Emotional Toll
I haven’t carried myself with grace. I’ve spent a lot of time crying and being angry at everything. Oddly, one thing I never felt was, “Why me? Why did this happen to me?” I don’t know why. I can’t tell you why, but I’ve not handled it very well.
There have been a lot of times that I get depressed. I shut down. I get gripe-y with people. I withdraw. I’ve always been a quiet person. Everybody says you have to remain positive and be positive. In a lot of aspects, that’s true, but you also have to be a realist and allow yourself to feel these feelings to get through them.
My counselor said, ‘Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis.’
Some things that I do that help me is seek mental health care. When I was first diagnosed, I was seeing a counselor and was on anxiety medication. When I moved, I didn’t need those anymore because back then, I had other situations I was dealing with that I wasn’t in anymore.
I practice a lot of self-care. I used to feel guilty about spending money on myself, especially as a parent, but I don’t anymore because it’s vital to my survival and helps me cope after years of dealing with my cancer.
You go through a grieving process too, much like a death. My counselor said, “Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis. You’ll never go back to life before that diagnosis, especially with cancer. You start grieving the loss of that life, so you need to go through all those steps and emotions to get through it.” For a lot of people, that’s hard.
The biggest stigma in the cancer community is to fight it and beat it. Either beat it or you lose. Normally, those are your only options. But when you have cancer that keeps on coming back, you don’t have that. You’re either sick or not sick. You never win. You never go the rest of your life not having to worry about it again. It becomes a part of you and you learn to deal with it. It’s like getting diagnosed with any other type of major illness. There’s before the diagnosis and after the diagnosis. You have to figure out how to live with it. Find a good support system and resources to help you.
Publishing a Cancer Care Book
When I was first diagnosed, there were different things that I had to keep track of. I had a little notebook where I was writing everything down on because I couldn’t keep track of everything, especially once I moved. I had to get new doctors, new patient portals, and new insurance. There was too much for me to keep track of. I found a group and talked to other people about it.
I’m a graphic designer by profession, so I thought about making a book for other people and created a guided journal called Cancer Care Book, which is available on Amazon (no commission is being earned with this link). It’s geared toward women, but men could use it too. It’s for anybody who has cancer but specifically for newly diagnosed people.
There are different sections in it where you can keep track of all your appointments and bills, write things out like a journal, or if you’re an artist, you can draw or doodle. There are coloring pages because I’m a big believer in art therapy.
There’s a section called The Tough Stuff where you can organize your bucket list items and final wishes. They may deny it, but everybody will think about what happens if they die and this is the perfect way. Nobody has to see this if you don’t want to.
If you get so sick and have a caretaker, you can keep track of all the information, like medication, and hand it off to a caretaker. There’s an emergency contact list on the first page, so if something happens to you, people will know who to reach out to. I put everything that I thought I would want when I was first diagnosed.
You can’t take care of anybody else if you don’t take care of yourself first.
Words of Advice
I made a video that showed six things that are key to your survival and the biggest one is early detection. Don’t wait. If you have any kind of symptom or you feel like something is wrong with your body, get it checked out. Don’t put it off. Early detection is key.
Advocate for yourself no matter what. Get those answers and get education.
Find your tribe. Find your support. They’re out there. On my website, I have a Resources page with over 500 websites for all cancers.
Take care of yourself because much like when you’re flying on a plane and they tell you to put the oxygen mask on first, you can’t take care of anybody else if you don’t take care of yourself first.
Anyone who has had a cancer diagnosis needs to get some kind of mental health care to process everything. You can find a lot of help in support groups and support centers, but they’re limited and can only help you so much. If you’ve never seen a counselor or a therapist before, once you get a diagnosis, they should be next on your list of doctors to see.
You have to come to terms with your mortality. A lot of people think they’re going to live forever. You have to shift your thinking. Cancer could take you out, a car accident could take you out, or a fire could take you out. Anything could happen. You need to reevaluate your life and make better choices of what’s important to you and your closest loved ones.
Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.
Symptoms: Irregular occurrences of seeing streaks of blood in urine, specific type of pain when bladder is full, unexplained weight loss, urinary urgency, malaise, fatigue Treatments: Chemotherapy (gemcitabine), surgery (TURBT: transurethral resection of bladder tumor)
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Eva, a 26-year survivor of stage 4 oral cancer, shares her story of diagnosis, treatment, and recovery. She developed a sore on her tongue, which was initially dismissed by dental professionals. For over two years, Eva’s symptoms were misdiagnosed, with treatments ranging from gels to night guards. The pain worsened, affecting her speech and eating, leading her to seek a second opinion from a renowned surgeon in New York. This resulted in a diagnosis of stage 4 squamous cell carcinoma on the lateral border of her tongue.
The subsequent treatment was radical and life-altering. Eva underwent surgery to remove a third of her tongue and 40 lymph nodes, three of which were cancerous. To reconstruct her tongue, tissue was taken from her leg and wrist. She then endured a maximum dose of targeted radiation therapy, which was excruciating, causing severe burns and blisters in her mouth and throat, making it difficult to eat, speak, or sleep.
Eva recounts a pivotal moment during her treatment when she considered giving up due to the unbearable pain. However, her radiation oncologist’s encouragement inspired her to continue. This experience drove Eva to become an advocate for oral cancer awareness. She emphasizes the importance of thorough oral cancer screenings during dental checkups, advocating for both intraoral and extraoral exams to detect the disease early.
Throughout her ordeal, Eva also reflects on the impact of her illness on her family, particularly her young children, who experienced trauma during her treatment. Despite the challenges, Eva believes her experience has given her a unique opportunity to educate others and potentially save lives. She underscores the importance of living a life of breadth rather than length, using her voice to spread awareness and ensure that others do not suffer as she did.
Name: Eva G.
Diagnosis:
Oral Cancer (Squamous Cell Carcinoma of the Lateral Border of the Tongue)
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
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Kate began experiencing symptoms, such as random spotting during or after sex and abdominal pain, years before seeking medical attention. Initially misattributed to gallbladder issues, her condition worsened, leading to an emergency room visit where a CT scan revealed a shadow. Subsequent tests and an ultrasound uncovered two large masses, which would later be classified as squamous cell carcinoma of unknown origin.
Kate’s journey to a definitive diagnosis was complex. Initially suspected to be cervical cancer due to testing positive for HPV, her diagnosis changed after multiple biopsies. These tests showed her cervix and uterus were benign, but the masses remained malignant.
Her treatment plan was equally challenging. She began with chemotherapy but suffered severe reactions, including a massive rash that required hospitalization. Despite these setbacks, the tumors responded well to treatment, shrinking by 75% after several rounds of chemo. Kate’s oncologist decided to proceed with surgery, successfully removing the tumors and performing a full hysterectomy. Post-surgery, pathology reports showed all removed tissues were benign, and the tumors were necrotic, indicating she was cancer-free.
Kate reflected on the mental toll of her diagnosis and treatment, emphasizing the importance of allowing oneself to feel all emotions and seeking support. She stressed the importance of listening to one’s body and seeking medical attention for abnormal symptoms. Despite the daunting challenges, Kate remained determined to continue living a fulfilling life with her husband and daughters.
Name: Kate R.
Diagnosis:
Squamous Cell Carcinoma of Unknown Primary Origin
Staging:
Stage 3C
Symptoms:
Intermittent spotting during or after sex
Unpredictable menstrual cycle
Abdominal pain, particularly under the rib cage
Treatments:
Chemotherapy: cisplatin and paclitaxel
Immunotherapy: Keytruda
Surgery: total abdominal hysterectomy with bilateral salpingo-oophorectomy, omentectomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy)
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