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Now having conquered three cancers and am fighting metastatic pancreatic cancer, scars from all the surgeries within the last 26 years have shown victories and hope.

Cancer Took Me From Disfigured to Prideful

In February 2016, Angie*, then 41-years-old with no prior health issues or family history of breast cancer, was diagnosed with de novo metastatic breast cancer after experiencing back and rib pain. This term refers to breast cancer that has already spread to other parts of the body at the time of initial diagnosis.

The diagnosis was stunning, especially since her most recent mammogram had been clear. Angie's immediate concerns centered around her mortality and the future of her young daughter. Her oncologist initiated treatments to block and suppress the hormones driving the cancer, to which she responded well, maintaining stable disease for nearly seven years.

Seeking support, Angie joined an online group for women with Stage 4 breast cancer, finding solace in shared experiences. In 2023, at the San Antonio Breast Cancer Symposium, she discovered ABCD: After Breast Cancer Diagnosis and its customized peer support. Encouraged by Executive Director Ellen Friebert Schupper, Angie trained to become a an ABCD Mentor, completing her training in early 2024. By December 2024, she had been matched with 11 Participants, highlighting the significant need for support among metastatic patients.

Angie observes that many breast cancer support groups emphasize curing the disease, which can be isolating for those with Stage 4 cancer, where the focus is on managing the disease. “I think for the metastatic community, we’re kind of more in the shadows and not talked about as much,” Angie says.

Through her experience as an ABCD Mentor, Angie addresses the prevalent fear among Participants by sharing her experiences and offering reassurance, aiming to bring metastatic breast cancer out of the shadows and into broader awareness.

 about finding - and then giving - support and how she’s living with hope, even when facing the news that her disease has progressed. 

Angie, diagnosed with de novo metastatic breast cancer at 41, found solace in online support groups and later became an ABCD Mentor. Despite her initial shock and concerns about her mortality and her daughter's future, she responded well to hormone-blocking treatments, maintaining stable disease for nearly seven years. Angie highlights the isolation felt by Stage 4 cancer patients due to the focus on curing rather than managing the disease. As a mentor, she aims to raise awareness and provide reassurance to others facing similar challenges.

In February 2016, Angie was diagnosed with de novo metastatic breast cancer after experiencing back and rib pain. 

NOINDEX

NOFOLLOW

Angie’s Impact Story: No Longer in the Shadows – Spreading Awareness About Metastatic Breast Cancer

I titled this blog, “Strutting Into Year 11.” Anyone who knows me will laugh at the title because if there is one thing I am not, it’s a strutter.

But this year demanded a little more from me — more confidence, more faith, more, more, more. There have been other years like this during my time living with cancer: year three comes to mind, when I passed the median life expectancy (at that time) for HER2-positive metastatic breast cancer (MBC), and so does year five, when I suddenly saw the world return to me with more hope than I’d felt since I received my diagnosis.

There’s a pretty big gap between year five and year 11, but falling in those gap years are the worst: COVID years, my mother’s death from MBC, the loss of very good friends to MBC and some general family upheavals. It’s been a rough stretch, and despite what I see as scary and uncertain times ahead, I want to believe we will see better.

Personally, I’ve been thinking about what it means to be entering my second decade living with this disease. The first thing I wondered is if 11 is considered a lucky number. Turns out that in some cultures, 11 is associated with new beginnings, spiritual awakening and auspicious opportunities, representing alignment and balance.

Of course, if there is a “new beginning”, there is also a past. When you live this long with stage 4 cancer, receiving regular treatments with annoyingly long-lasting side effects, time doesn’t stand still. In addition to being the start of my second decade with cancer, this is also the start of a new decade of my life. Aging with cancer is something of a challenge. There isn’t really enough known about long-term survivors like me, from adjusting treatments to maintaining quality of life. While I was once considered “young” by my oncologist, age is now an issue that demands special attention.

Year 11 truly feels like a year of new beginnings, and here’s my plan for strutting through it:

 Lead with “I’ve been lucky” when asked about how I’ve stayed alive with Stage IV cancer.

 Luck plays a role, no argument, but steps I actively take also play a role. I’m done downplaying the role of researching treatments and my belief that my behavior impacts my quality of life.

 Gave the benefit of doubt to people I didn’t actually respect or believe.

: Time is short and so is life. This has been brought home to me over the past several years. Cancer has taught me that some people are not my friends, regardless of what they say. While age is finally teaching me that I don’t have to cut everyone a little slack when they do things that are damaging.

 Name every emotion, sometimes spiraling into pain that was hard to escape.

 I still name what I’m feeling but I’m building guardrails to keep me in a better psychological space. This means things like creating more, reading more, seeing more, doing more and welcoming more. Not positivity, but a return to a bigger life.

 Count my cancer losses (there’ve been a lot).

 This decade with cancer hasn’t been all about the losses. There’s been growth too and building on that is where I am for this new beginning.

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

subscribe to CURE®’s newsletters here.

Living with HER2-positive metastatic breast cancer for over a decade, the author reflects on the challenges and growth experienced during this journey. The transition into the eleventh year is seen as a new beginning, marked by a shift in perspective towards actively managing the disease and embracing life. The narrative highlights the importance of acknowledging both the losses and the growth that come with long-term cancer survival. The author emphasizes the need for personal empowerment, setting boundaries, and fostering a richer life experience despite ongoing treatment and aging.

After living with metastatic breast cancer for 11 years, I reflect on my journey and plan to embrace the coming year with confidence and self-advocacy.

Tumor

Strutting Into Year 11 With Metastatic Breast Cancer

Monitoring and Tracking Symptoms of Polycythemia Vera

Video content above is prompted by the following:

What should patients tell their physicians about their symptoms?

What questions do you ask patients when they report their symptoms to you?

How should patients document their symptoms? Is there a symptom tool you recommend?

When and why should patients notify their care team about symptom changes? What are some questions that patient should ask themselves about their change in symptoms?

How can patients recognize and track the early warning signs that their polycythemia vera might be progressing or becoming more active?

A panelist discusses how patients should communicate comprehensively with their care team about symptom patterns, documentation methods, and warning signs of polycythemia vera progression, including key questions to ask themselves about symptom changes and recommended tracking tools.

Video Series

Dr. David A Braun delved into detail on the molecular factors driving exceptional responses to immunotherapy in metastatic clear cell renal cell carcinoma.

An Expert Expands on What Drives ‘Exceptional’ Responses to RCC Treatment

In a clinical trial conducted by experts in the metastatic clear cell renal cell carcinoma (ccRCC) — a type of kidney cancer — treatment space, investigators highlighted the importance of tailoring immunotherapy approaches based on molecular and immune features to optimize outcomes for patients with mccRCC.

Findings from the investigation showed that specific molecular factors, such as having a higher load of clonal neoantigens or robust B-cell receptor signaling, drove patients with this disease to have exceptional responses to their immunotherapy, according to Dr. David A. Braun, a co-author of the study.

In an interview with CURE®, Braun delved into detail on the molecular factors driving exceptional responses to immunotherapy in metastatic ccRCC, sharing how specific treatments may work better for certain patients. Braun currently serves as as an Assistant Professor of Medicine, Medical Oncology, and is a Louis Goodman and Alfred Gilman Yale Scholar, at the Yale School of Medicine, and a member of the Center of Molecular and Cellular Oncology at Yale Cancer Center, in New Haven Connecticut.

Read on to see what he had to say about the study!

We think very deeply about what is it that patients are sort of ultimately looking for, and to [get the] best answer, you have to go to the patients themselves. Dena Battle, who's a wonderful advocate in the kidney cancer community, runs a group called KCCure. She's done these surveys of what patients are looking for [in] the treatment of [their] metastatic cancer, and when you look at it, there's a lot of things that are important and that are meaningful. But the top things are trying to get to long term durable responses, and in an ideal world, cures. [We are] trying to get to a point where patients have long term disease control.

In the pure targeted therapy era, that wasn't an achievable thing, necessarily, for kidney cancer, at least for the far majority of patients. Even in the modern immune checkpoint era, the majority of patients aren't able to get that level of benefit, but some are. The key is, now that we're starting to understand the factors that might allow some patients to have those exceptional responses to this immune therapy, the hope is that we really can learn from that; however, we do have to push this forward.

How can we learn from [our study] to make it not so exceptional [and a more widely accepted standard], so that we understand the factors that can lead to these long term, durable responses, the ones that patients are really hoping for and asking for? How can we rationally design our next set of experiments and ultimately clinical trials to move towards those exceptional responses? I think that's the goal of this kind of research.

Transcript has been edited for clarity and conciseness.

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

In a retrospective study of patients with gastrointestinal stromal tumors (GISTs), the utility of both laparoscopic wedge resection (LR) and endoscopic resection (ER) — two minimally invasive approaches to this disease — served as safe and feasible treatment approaches, despite there being disagreement as to which is the better choice among clinicians. However, according to a study published in 

The World Journal of Gastrointestinal Surgery

, LR is specifically recommended for tumors larger than 4 centimeters (cm) compared with ER.

When conducting the retrospective study, the ER group (59 patients) was found to have had longer operative times than the LR group (59 patients) at 120 versus 70 minutes; however, the median postoperative time to liquid diet was significantly shorter in the ER group compared with the LR group (4 days versus 5 days), respectively. Furthermore, the ER group, compared with the LR group, had fewer postoperative symptoms, though there was no significant difference in the postoperative hospital stay (both at 7 days) or hospital costs between the groups.

“Both ER and LR are safe and effective treatments for gastric GISTs [gGISTs]. ER is associated with less postoperative pain and faster recovery and is particularly suitable for cases where cosmetic results or preservation of organ function are desired. In contrast, LR is strongly recommended for large tumors [more than 4 cm] due to its high rate of complete resection,” the study authors wrote in their research.

The Safety of Both Treatment Approaches and Long-Term Outcomes

Regarding safety, there were no significant difference in surgery-related complications between the two groups, though, in the ER group, bleeding occurred in three patients and was treated with conservative treatment or endoscopic hemostasis. In the LR group, postoperative anastomotic fistula occurred in one patient but improved after fasting, adequate drainage, and anti-infection. Five cases of postoperative infection were reported in the ER group versus 8 in the LR group; there was no significant difference in the incidence of postoperative infections between the LR and ER groups.

In all tumors in both groups en bloc resection was achieved, and, in the ER group, 43 tumors received en bloc removal from the stomach and complete resection after PS matching; the remaining 16 tumors were temporarily attached to the stomach using clips though they were then removed en bloc with an endoscopic lithotripter on the next day. Looking to the LR group, 1 tumor did not achieve complete resection because of fragmentation, making the rates of complete resection higher in the LR group versus the ER group. Regarding mitotic count or pathological report risk, there were no significant differences between the groups.

When referring to long-term outcomes, the median follow-up times in the LR and ER groups were 54 months and 51.1 months, respectively; the difference was not statistically significant. In the ER group, GIST recurrence occurred in three patients prior to last follow-up and this number of patients was two in the LR group; again, the difference was not statistically significant. However, following PS matching, no GIST recurrence occurred in the ER group versus two in the LR group, still with no significant difference between the two groups. During the follow-up period, no metastases were observed and no significant difference in mortality between the two patient groups before or after matching was noted. In total, nine patients died across both groups, one of which was due to GIST recurrence and the other eight from other GIST-resection-unrelated diseases.

“The matched ER group showed significantly better outcomes than the LR group in terms of the resumption of a liquid diet and postoperative symptoms. The LR group had an advantage over the ER group in terms of the complete resection rate,” the study authors concluded. “There were no statistically significant differences between the two groups in terms of either the incidence of complications or the long-term postoperative outcomes.”

Diving into the Importance of ER and LR Approaches

GISTs are the most common mesenchymal tumors of the gastrointestinal tract with an annual incidence of 10 to 20 cases per million and primarily occur in the stomach. Management strategies for patients with primary gGISTs depend on tumor size and risk factors; however, surgical excision is recommended for localized gGISTs 2 cm or larger, while active surveillance is advised for smaller, low-risk lesions. There have also been advancements made in minimally invasive approaches to this disease, with techniques such as LR and ER offering benefits like faster recovery and less blood loss.

Despite these advancements, the choice between ER and LR remains a debated topic for gGISTs between 2 to 5 cm in size due to inconsistent outcomes. Some studies suggest LR has lower complication rates and shorter hospital stays while others highlight the advantages of ER, including shorter operation times and reduced costs. Therefore, Taizhou Hospital in the Zhejiang Province has conducted research which aims to provide updated guidance on treatment standardization for gGISTs garnering data.

Investigators reviewed and compiled information on patients with gGISTs who underwent ER or LR at the Taizhou Hospital of Zhejiang Province, Wenzhou Medical University, for their retrospective study from Jan. 2014 to Aug. 2022. Patients were included in this review if they were 18 years of age or older; had a longest tumor diameter of 2 to 5 cm; a diagnosis of gGISTs confirmed by postoperative pathological evaluation and immunohistochemical findings; surgery; and a surgical method of ER or LR. Participants were excluded from the investigation if they did not complete surgery; had adjacent organ invasion; or duodenal and small intestinal stromal tumors.

Furthermore, all patients underwent regular postoperative follow-up by endoscopic examination and CT. Additional follow-up data were acquired via telephone interviews or outpatient follow-up after surgery. Notably, follow-up time was defined as the period from the date of surgery to the last follow-up (August 2023) or death.

Prior to PS matching, in the ER group, the tumor size was significantly smaller (3.5 cm) compared with the LR group (4.2 cm), and the distribution of tumor locations differed between the groups. Notably, 63.4% of patients had tumors located in the gastric body in the LR group, as well as 0% in the gastric cardia, 28.2% in the gastric body and 8.4% in the gastric antrum. In the ER group, 48.9%, 3.7%, 42.2% and 5.2% of the tumors were located in the gastric body, cardia, fundus and antrum, respectively.

However, the study authors wrote that, “We performed a PS-matched analysis to eliminate the impact of confounding factors and enhance the credibility of the findings. After PS matching, 59 patients from each group were selected and included in the subsequent analysis. Post-matching, there were no significant differences between the two groups in terms of these factors.”

“Comparison of endoscopic and laparoscopic resection of gastric gastrointestinal stromal tumors: A propensity score-matched study.” Gu BB, et al. 

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

Laparoscopic wedge resection (LR) and endoscopic resection (ER) are both viable minimally invasive treatments for gastrointestinal stromal tumors (GISTs), with LR recommended for tumors larger than 4 cm. A retrospective study found ER associated with longer operative times but faster recovery and fewer postoperative symptoms compared to LR. Both methods showed similar safety profiles and long-term outcomes, with no significant differences in complications or recurrence rates. The study emphasizes the importance of tumor size and location in choosing between ER and LR for optimal treatment outcomes.

Both laparoscopic wedge and endoscopic resection are safe and feasible treatment approaches for patients with gastric gastrointestinal stromal tumors.

Laparoscopic Wedge and Endoscopic Resection Are Safe, Feasible in Gastric GISTs 

Interruption of treatment with Gleevec (imatinib) among some patients with advanced gastrointestinal stromal tumors (GIST) has been found by researchers to be associated with a faster occurrence of resistance to Gleevec and an increased risk of disease progression or death.

In the phase 3 BFR14 study, findings of which were published in 

, patients with advanced GIST were divided into two groups: those with stable or responding disease whose treatment was discontinued then restarted at the time of progression in the interruption group or those who received continuation of treatment until progression in the continuation group. Interruption of treatment, researchers noted, was associated with rapid disease progression among patients in the interruption group after one year, three years and five years.

At a median follow-up of 235.2 months after the one-year randomization, 200.9 months after the three-year randomization and 164.5 months after the five-year randomization, the median progression-free survival (the time a patient lives without their disease spreading or worsening) in the interruption and continuation groups was 6.1 months versus 27.8 months after one year of Gleevec, seven months versus 67 months after three years of Gleevec and 12 months versus not reached (meaning fewer than half of the patients in that arm experienced disease progression or died) after five years of Gleevec.

Likewise, the median time until resistance to Gleevec was 28.7 months in the interruption group and 90.6 months in the continuation group after one year on Gleevec, 66.2 months versus 127.3 months after three years and 58.6 months versus not reached after five years, researchers reported.

Additionally, the median overall survival (the time a patient lives, regardless of disease status) was 56 months in the interruption group and 105 months in the continuation group after one year on Gleevec, 104 months versus 134 months after three years and not reached versus 110.4 months after five years, according to the study findings.

At 12 years, 9% of patients in the interruption group were still alive versus 50% of the continuation group after the three-year randomization, compared to 33% and 83% of patients, respectively, after the five-year randomization.

“[Gleevec] interruption in patients with GIST without progressive disease is not recommended,” researchers wrote in the introduction to their findings. “[Gleevec] interruption in non-progressing patients with GIST was associated with rapid progression, faster resistance to [Gleevec] and shorter overall survival in the long-term follow-up when compared with [Gleevec] continuation in patients after three years and five years of [Gleevec].”

These observa­tions have possible relevance for chronic myeloid leukemia and other cancers treated with tyrosine kinase inhibitors, a class of drugs that includes Gleevec, researchers noted

GIST, according to the American Cancer Society, is a group of uncommon cancers that begin in the cells in the wall of the gastrointestinal, or digestive, tract. Approximately 60% of cases of GIST begin in the stomach, and about 35% of cases begin in the small intestine, with most of the rest found in the esophagus, colon and rectum, with a small amount developing in the abdomen, the American Cancer Society explained, noting that approximately 4,000 to 6,000 cases of GIST are diagnosed in the United States each year. GIST, the organization stated, is most commonly diagnosed among people older than 50, but can develop among people of any age.

Interruption of Gleevec (imatinib) treatment in patients with advanced gastrointestinal stromal tumors (GIST) leads to faster resistance, increased disease progression, and reduced overall survival. The phase 3 BFR14 study demonstrated that continuous treatment significantly prolongs progression-free survival and delays resistance compared to treatment interruption. Median progression-free survival and overall survival were notably longer in the continuation group across one, three, and five-year intervals. These findings suggest that continuous Gleevec therapy is crucial for managing GIST and may have implications for other cancers treated with tyrosine kinase inhibitors.

Researchers are advising against the interruption of treatment with Gleevec among patients with advanced gastrointestinal stromal tumors.

Bobbie Vails

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