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Non-Hodgkin Lymphoma Patient Stories

Michelle’s Stage 2 Non-Hodgkin Lymphoma Story

Michelle’s Stage 2 Non-Hodgkin Lymphoma Story

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Michelle is a survivor of stage 2 primary mediastinal large B-cell lymphoma (PMBCL) non-Hodgkin lymphoma. In her early thirties, she began experiencing symptoms such as neck pain, which she initially dismissed as a pulled muscle. This was around the anniversary of her mother’s passing from stomach cancer, and Michelle felt a growing sense that something was wrong. Following a series of inconclusive medical exams, an x-ray ultimately revealed a large tumor in her chest, leading to her diagnosis of non-Hodgkin lymphoma. Michelle’s diagnosis and subsequent journey marked a significant and transformative chapter in her life.

The discovery of the tumor stunned and terrified Michelle, particularly given her recent experience losing her mother to cancer. Genetic testing revealed no hereditary links to her illness, suggesting it was likely environmental, further compounding her sense of the unknown. Her treatment plan included 6 rounds of intensive chemotherapy, which involved 5-day hospital stays on a continuous drip. The treatment was effective but came with a host of side effects, including severe nausea, fatigue, appetite and weight loss, and hair loss, which further traumatized Michelle. She recalls how losing her hair and eyebrows created a “loss of identity,” as she struggled to recognize herself. Her physical transformation added to the emotional toll, which was exacerbated by continuing to work full-time.

Ringing the bell at the end of Michelle’s successful chemotherapy treatment marked the start of a difficult recovery journey rather than closure. She found that, contrary to popular belief, the end of treatment brought a new set of challenges: trauma from the experience, persistent health issues from chemotherapy, and anxiety about recurrence. Additionally, her body struggled to absorb nutrients due to chemotherapy’s impact on her digestive system. Despite these challenges, Michelle committed herself to her recovery, focusing on nutrition and mental well-being.

This experience led Michelle to change her career path, eventually becoming a certified integrative nutrition health coach to support other cancer survivors in recovery. She emphasizes that recovery is an ongoing process, requiring tools to manage stress, anxiety, and long-term side effects like lymphedema and scar tissue.

Michelle has found purpose in helping others navigate the post-treatment journey, hoping to bridge the gaps in aftercare support. Through her own trials and transformations, she has emerged with a renewed sense of identity and dedication to holistic health, embracing the perspective and purpose she found on the other side of her battle with cancer.


  • Name:
    • Michelle P.
  • Diagnosis:
    • Primary mediastinal large B-cell lymphoma (PMBCL) non-Hodgkin lymphoma
  • Staging:
    • Stage 2
  • Initial Symptom:
    • Severe neck pain
  • Treatment:
    • Chemotherapy

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


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Arielle R., Primary Mediastinal (PMBCL)



1st Symptoms: Swollen neck lymph nodes, fever, appetite loss, weight loss, fatigue, night sweats, coughing, itchy skin, trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Keyla S., Primary Mediastinal (PMBCL), Stage 1



1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Donna S., Primary Mediastinal (PMBCL), Stage 1-2



1st Symptoms: Visible lump in center of throat, itchy legs, trouble swallowing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Patrick M., Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Bump pushing up into sternum
Treatment: 6 cycles of DA-EPOCH-R (dose-adjusted) chemotherapy at 100+ hours each

Crystal Z., Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy
Categories
Breast Cancer DIEP Hormone Therapies Invasive Ductal Carcinoma Mastectomy Patient Stories Surgery tamoxifen Treatments

Krista’s Stage 1A IDC Breast Cancer with ATM Mutation Story

Krista’s Stage 1A IDC Breast Cancer with ATM Mutation Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Krista B. feature profile

Krista’s stage 1A breast cancer journey is deeply connected to her family’s history. Her mother was diagnosed with stage 3 breast cancer at 48 and underwent various treatments like chemotherapy, radiation, and hormone therapy. She tested positive for a mutation in the ATM gene, which raises the risk of breast cancer. This finding led Krista to get genetic testing, revealing she also carried the same mutation, giving her a 69% risk of developing breast cancer.

Krista began following a rigorous screening schedule, alternating between mammograms and breast MRIs every six months. Despite a normal mammogram, her MRI detected an abnormality. Though specialists initially dismissed it as non-cancerous, Krista felt uneasy and insisted on a biopsy. This confirmed her breast cancer diagnosis just two weeks before her scheduled preventative surgery.

She chose to undergo a double mastectomy with DIEP flap reconstruction, using tissue from her abdomen to reconstruct her breasts. The process involved an initial eight-hour surgery followed by a revision surgery. After the procedure, Krista was relieved to avoid chemotherapy due to her low Oncotype DX score. Instead, she began a five-year course of tamoxifen, experiencing minor side effects like sleep disturbances and fatigue.

Her treatment plan also included daily exercise, which helped manage the side effects. Krista’s nutrition strategy focused on a plant-heavy diet, aiming for 8 to 10 servings of fruits and vegetables daily with a balanced intake of high-quality, low-quantity meat.

Mentally, Krista dealt with stress by spending quiet time, running, and leaning on her husband’s support. She emphasizes the importance of making informed, personal treatment decisions and encourages others to consider genetic testing and explore all their options.

Krista’s motivation to share her story comes from a desire to empower others with the knowledge she has gained. She hopes to help others make informed decisions and potentially prevent cancer. She advocates for taking one’s time to navigate the overwhelming journey of cancer, stressing the importance of making decisions that bring peace of mind.


  • Name: Krista B.
  • Diagnosis:
    • Breast Cancer
    • Invasive ductal carcinoma (IDC)
    • HR+, HER2-
  • Staging:
    • Stage 1A
  • Mutations:
    • ATM
  • Symptoms:
    • None; abnormality detected in breast MRI
  • Treatments:
    • Surgery: double mastectomy with DIEP flap reconstruction
    • Selective estrogen receptor modulator (SERM): tamoxifen
Krista B.
Krista B.
Krista B.
Krista B.
Krista B.
Krista B.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Expand to read the AI-generated YouTube Video Transcript

[00:01] Hi, I’m Krista, and I am a nurse and a patient advocate and a breast cancer survivor. My story really begins with my mom’s cancer diagnosis. She was diagnosed at age 48 with stage 3 breast cancer. At that time, she was only tested for two gene mutations linked to breast cancer, which were the BRCA1 and BRCA2 mutations. She was negative.

[00:36] Fast forward, she did every type of treatment—chemo, radiation, hormone therapy, everything. She put up a strong fight for about 12 years. Shortly before she passed away, she was unfortunately offered expanded genetic testing for other genes linked to breast cancer. She did test positive for a mutation in her ATM gene, which was a pathogenic mutation and higher risk than the average ATM gene.

[01:15] She shared that with all of her children because we then had a 50% chance of inheriting that from her, so we had the option to also test for that mutation. A few months after she passed away, I decided to move forward with my own genetic testing and found out I was also a carrier of the same mutation. So, I had a 69% risk of breast cancer, a 5 to 10% risk of pancreatic cancer, and also a 2 to 3% risk of ovarian cancer.

[01:56] Because I was at high risk for these cancers, I started to follow the recommendations for more thorough and frequent screenings, which meant on top of mammograms, I was also doing breast MRI, alternating every six months. I started that process and also began considering different surgical options for preventative surgeries.

[02:20] During this time, my mammogram was normal, but my breast MRI showed an abnormality. We did some follow-up testing—ultrasound and diagnostic mammogram. At that time, they said that it did not look like cancer. I was nervous about that with my risk, so I followed up and had three specialists tell me that it was not cancer. They advised me to take my time, make my decisions, and move forward with the surgical plan that I had in place.

[03:01] So, I did that, but because it started to have a possibility of affecting the process of my surgery, I requested a biopsy. It came back two weeks before my preventative surgery and showed a diagnosis of breast cancer. It was a little bit of a shock. I went into my biopsy thinking, “Oh, I’m good. This is just a routine check to make sure it’s okay to move forward with my surgery in the order we had planned.” So, I was really surprised at the diagnosis, but I was grateful to have that plan in place already and that I wasn’t scrambling to make decisions.

[03:42] I had my first surgery, a double mastectomy with flap reconstruction, on January 30th of this year, followed by a second surgery in April. Luckily, I really believe that I owe this all to my mom and advances in genetics. I’m grateful every day for the fact that she did genetic testing because, to this day, at this point in time, I don’t think I would still have a diagnosis based on my screening schedule. I’m very grateful I was able to avoid chemotherapy and a lot of the other things that I watched her go through. I’m grateful for that every day. It saved my life.

[04:36] If you’re interested in doing genetic testing, the first step would be to talk to your medical provider. This can sometimes be your primary care provider, an OB-GYN, or any specialist in the field of cancer that you may or may not have a family history with. You’re going to want to request a hereditary cancer panel, which screens for somewhere around 79 different genes that are now linked to cancer. The first step would be to request that from your provider, and most of the time, they’ll recommend that you see a genetic counselor, which is a great idea in my opinion. They’re amazing and have the most up-to-date information on the different genes and the risks associated with each. They do a deep dive into your family history and then make recommendations for different testing.

[05:31] From that point, it has really changed my life. I have three little girls, and I just think how different it’s going to be for them and how much they can avoid. But when it comes down to choices for reconstruction, there are typically three main choices that are offered to patients or should be offered to patients. One of them is esthetic flat closure, the second one is breast implants, and the third is flat base reconstruction. Flat base reconstruction is one that’s a little less known. It was my choice, and rather than having an implant, they take tissue from a part of your body and basically transplant it with all the vessels and use that in place of the implant for your reconstruction.

[06:26] It’s pretty amazing the way that they do it, and there are different places that they can take the tissue from. One of the most common is the one that I chose called deep flap reconstruction. They take tissue from your abdomen and use that for the reconstruction. It’s a little bit of a longer surgery upfront, and it was a two-phase surgery for me. That’s very common for patients who choose this reconstruction option. It is around an eight-hour surgery usually, so a little longer.

[07:06] My advice to anyone who is facing these choices is that they’re very hard choices, right? They’re life-changing decisions that you have to make. Sometimes you aren’t given a lot of time, but the thing that I hope everyone understands is that there are different options out there. Regardless of what anyone else thinks—whether it’s your provider, your family members, or someone who has been through it—ultimately, it’s your decision, and it’s what you have to live with. It should be the choice that makes you feel the most at peace moving forward.

[07:50] I have a lot of patients who I talk to who get very frustrated because they were not offered all the options. That’s one of the reasons I like to share my story because even for me as a nurse, in the beginning, I did not have a clue that this was an option. My biggest advice would be to take your time. Even with a cancer diagnosis, you have time to make an informed decision. Consider all of your options and choose the one that makes you feel the most at peace moving forward.

[08:25] The recommendation for me, treatment-wise moving forward, was that I had a very low risk of recurrence. My Oncotype score was one out of 100, so no chemo was recommended. But I was hormone receptor-positive, HER2-negative. The recommendation for me was tamoxifen, and that would be over a five-year period. I am at this point only three months in, but very happy to say that my side effects have been very minimal so far. I know that can change, but so far, not bad—just a little bit of sleep disturbance and fatigue, but nothing that is not manageable.

[09:10] One of the things that my oncologist, who I love, recommended was making sure you exercise every day. That was going to make the biggest difference in my side effects on that medication, so he said, “Don’t stop.” So I increased it, and I’m going to keep doing that and hope for the best moving forward. I know that side effects can be really hard sometimes, and it’s always a hard choice. It was something that I never wanted to do, which is why I chose the preventative surgery. But here we are. Just try to make the best of it and take it day by day.

[09:52] I think I tend to carry stress well somehow, but after everything was finished, I felt this huge weight lifted off my shoulders. I remember saying to my husband, “I didn’t even realize how much I was carrying until I was done with the surgery part.” It’s a huge stressor, but I did try to do a few things during the last year as I was going through all of this that helped a lot.

[10:31] For me, I’m not necessarily a meditation person, but that is very helpful for a lot of people. For me, I have a swing on my back porch, and that’s kind of my space where I spend a lot of time. I guess it could be similar to meditation, but that was very helpful to me. I would just go out and have quiet—turn off the phone, have time to just kind of process things, and swing on my swing. Grounding is also really good.

[11:10] Having somebody to talk to is important. I’m very lucky. My husband is very supportive, and he listened to me. I’m an out-loud processor, so he listened as I made all these hard decisions and changed my mind 500 times. Just the back-and-forth, talking about all the things I’m learning about food—you have to have a person who is willing to listen and not necessarily give advice. That was very helpful.

[11:42] I’m also back to the exercise, but running is a huge stress relief for me. That was one of the things I also tried to focus on—making sure I was getting in running and doing some deep breathing.

[11:55] One of the biggest things that feels overwhelming to a lot of people who have just been diagnosed with cancer or are at high risk is, “What do I eat?” That was one of the first things that I said to my doctor, “What should I eat? Is there a specific diet that I should be on?” I talk to women every day who are asking the same questions. It is one of the most impactful things that we can do, but also one of the most overwhelming, especially if you’re trying to navigate all of these things being thrown at you with a new diagnosis and high-risk genes.

[12:34] I am in a Master’s of Medical Nutrition program right now, which I love. I get to focus a lot on the research with cancer prevention and all of the new studies that are coming out. I love it. I’m very passionate about it, but I will also say that there is no perfect plan. There’s no perfect diet that we can all do to prevent cancer, right? There’s no 100% guarantee with anything when it comes to cancer. It does what it wants.

[13:10] Some of the best recommendations I can give are to eat a lot of plants. One of the best things you can do is eat lots of fruits and vegetables. I think the recommendation is 5 or 6 servings. I try to go for 8 to 10 every day, which sounds like a lot, but once you start incorporating them and finding different ways to do it, there are so many things—fruits, vegetables, nuts, legumes, whole grains—that have so many benefits for cancer and trying to prevent cancer and reduce your risk as much as possible.

[13:47] The reason that I like to share this kind of information is because, for me personally, moving from this place of overwhelm and trying to navigate everything into a space where I felt more empowered was huge for me. I remember thinking, “I’m a nurse, and how much of this did I not know from the start, and how much have I had to learn?” I felt very fortunate to have access to a lot of courses and certifications that not everyone has.

[14:26] I feel like I owe my life to my mom and genetic testing, and I would be in a very different place without that. After I went through all of this, I felt this huge responsibility to share with others because I know there are so many people who could benefit from this information. Even if it makes a difference for one person or helps one person feel more empowered in their decision-making and informed about the options that are available, even genetic testing—if it helps one person or prevents one cancer diagnosis—it’s totally worth it.

[15:12] No matter what phase you’re going through, it’s scary, and it’s overwhelming. Whether you have been diagnosed with cancer already or are a provider who is just starting out on your journey, just know that it’s not always going to feel like it feels right now.


Krista B. feature profile
Thank you for sharing your story, Krista!

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Share your story, too!


More Breast Cancer Stories

Amelia

Amelia L., IDC, Stage 1, ER/PR+, HER2-



Symptom: Lump found during self breast exam

Treatments: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen

Rachel Y., IDC, Stage 1B



Symptoms: None; caught by delayed mammogram

Treatments: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
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Rach D., IDC, Stage 2, Triple Positive



Symptom: Lump in right breast

Treatments: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
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Caitlin J., IDC, Stage 2B, ER/PR+



Symptom: Lump found on breast

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Symptom: Lump in breast

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FAQ Resources Treatment Info

Genetic Testing For Cancer

Genetic Testing For Cancer


You or someone you know may have heard about genetic testing. Maybe you are preparing to get genetic testing done and are wondering what to expect. Rest assured, it’s a fairly straightforward process, and we’ve spoken to some experts who break it all down for you. Read on to learn about who should get tested, how the process works, and other important information about genetic testing.

What is genetic testing?

Genetic testing analyzes your DNA to determine whether you have genetic mutations linked to cancer. Doctors will typically ask for a blood or saliva sample to perform these tests.

Who should get genetic testing?

Certain factors like your personal cancer diagnosis, family history, age and personal medical history are extremely important in determining whether you need genetic testing.

Julie Solimine, MGC, CGC of Mercy Medical Center in Baltimore says that the best candidates for genetic testing include:

  • People with early onset cancers
    • Such as breast, colon, or uterine cancer diagnosed under the age of 50
  • Individuals with more than one primary cancer diagnosis in their lifetime
    • Such as bilateral breast cancer, or a diagnosis of both colon and uterine cancer in the same person
  • Individuals with a family history of multiple diagnoses of the same cancer type, especially if early onset
  • Individuals diagnosed with ovarian cancer, male breast cancer, or pancreatic cancer at any age
  • Ancestry that increases your risk, such as Ashkenazi Jewish ancestry.

Additionally, you may be a candidate for genetic testing if you have:

  • Relatives that have similar types of cancer that could be linked to one particular genetic mutation (i.e. if your aunt has ovarian cancer and your mother has breast cancer, both of which could possibly be linked to a BRCA2 mutation). 
  • Relatives with multiple different cancer diagnoses.
  • Physical symptoms that prompt your doctor to recommend testing.
Who in my family should pursue genetic testing?

Once you’ve identified an individual or family who would benefit from genetic testing, how do you know to test? Do you test everyone? Here’s what certified genetic counselor Angela Brickle says:

“We typically recommend that an individual who has been affected by a particular suspicious cancer or the youngest person who has been diagnosed in the family get tested.

That’s simply because they would be the most likely candidates to find something helpful rather than testing someone in the family who hadn’t had cancer.”

Angela Brickle

Just because someone has cancer doesn’t necessarily mean that it’s due to a genetic factor and they need testing. In fact, “approximately 90% of cancer is sporadic, meaning it is due to random chance, aging, or environmental causes,” according to Solimine.

That’s why it’s so important to give your doctor all the information they need, including family and personal medical history. That way, they can offer you the best, most beneficial testing and treatments.

How do I ask for genetic testing?

If you think you may need genetic testing, first speak to a genetic counselor. A genetic counselor can help you determine whether genetic testing is right for you and can help you figure out payment options, including insurance coverage and low-cost testing.

Your healthcare provider can help you find a genetic counselor. Some healthcare providers also provide genetic counseling. 

How does the genetic testing process work?

“There are two parts in the process: genetic counseling and genetic testing. Ideally, genetic counseling happens before the testing. 

With counseling, I meet with the patients. We go over all their medical history and family history, and then I explain everything to them. I tell them how genetic testing is done (through a blood draw), what we’re looking for, and all the different types of results. 

The next part is actual testing. They get their blood drawn, get the testing done, results take maybe a few weeks, and then I follow-up with them about the results. Depending on results, if there are any additional appointments, screenings, or anything needed, we walk through that with them as well,” Brickle says.

Getting genetic testing results back

So, then what are the types of results you can receive from your genetic testing and what do they mean? Your results can come back positive, negative, or variant of uncertain significance (VUS).

Your genetic counselor will go over these results with you in their office after testing. Before testing, your counselor will brief you on what your results could mean.

As a refresher, a positive result means there was a change or mutation detected in a gene.

“A positive result does not mean that a person has cancer or was born with cancer, and it doesn’t mean it’s a guarantee that they will get cancer, but their risk might be higher,” Brickle says.

A negative result means there were no detected changes or mutations in specific genes covered by the test.

“A negative result may reduce suspicion of a hereditary condition, but it doesn’t necessarily eliminate every genetic possibility. In that case, I always make sure to let patients know we want to continue to follow them based on their personal and family history,” Brickle says.

A variant of uncertain significance shows a change in a specific gene, but it’s one that we’re still learning about.

“We don’t treat them like a positive, but it’s one that the lab will learn more about and try to clarify. If they can learn more about it, they will update us,” Brickle says.

How does genetic testing shape treatment?

Genetic testing results for an individual can change their treatment and/or screening options. If someone tests positive, they might consider getting more frequent screenings, or they may consider a surgical option like a double mastectomy.

Genetic testing results not only change the treatment options for a current patient, but they may also change the lives of that individual’s family. Just ask Shirley Pattan, an ovarian cancer thriver:

“Throughout all this, I did genetic testing, and it came back that I was BRCA1+. I had prophylactic surgeries for breast cancer. I had a double mastectomy and reconstruction. My sisters got tested and had preventative surgeries as well. One sister actually found out she had stage 1 ovarian cancer, so she caught it early and went through treatment.”

Shirley Pattan, Ovarian Cancer

Brickle calls this a “downstream effect.” Genetic testing can help your family members be proactive, and in some cases, it might save their lives.

Does insurance cover genetic testing? 

Most insurance plans will cover genetic testing, but each plan’s rules vary. Many plans will require genetic counseling first. FORCE provides a detailed overview of payment options here

Under the Affordable Care Act (ACA), women with a family or personal history of cancers linked to the BRCA genes can get genetic counseling and, if recommended, genetic testing covered with no co-pay. People with other genetic mutations are not entitled to zero co-pay testing under the ACA.

How do insurance companies treat genetic testing?

“A lot of insurance companies follow typical National Comprehensive Cancer Network (NCCN) guidelines. Those are just established guidelines for who might be appropriate for testing. If a patient meets that criteria, testing is usually covered,” Brickle says.

If your insurance doesn’t cover testing, you can always reach out to your social worker or navigator with questions about financial support and programs.

Luckily, cost has come down in recent years if you’re paying out of pocket. Many labs charge around $250.

Can genetic testing affect my insurance?

“Genetic testing can have important insurance discrimination implications, which should be taken into account before an individual sends in their sample. The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects people from genetic discrimination in health insurance and employment.

Genetic discrimination is the misuse of genetic information. However, GINA does not apply to life, disability, and long-term-care insurance, and also has other limitations. A genetic counselor can help patients determine potential risks to future coverage at the time of their consultation,” Solimine says.

Keep insurance concerns in mind when you see your genetic counselor before testing. They’ll be able to answer any questions you may have.

The future of genetic testing

“Genetic testing is always changing, and we’re always learning more. Our evaluation one day might be different down the road. We also recognize that families change. As time goes by, there may be new diagnoses. It’s a continual discussion. 

It’s always important to make sure that you update your doctors about your family history and just that you know the family history. Talk to your family about those questions,” Brickle says.


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