12 January 2021

12 January 2021

The National Cancer Institute (NCI) recently announced that they will start tracking breast cancer recurrence. Currently, initial cases of breast cancer are reported, but local / regional (in the breast or underarm lymph nodes) or metastatic (elsewhere in the body, most commonly lungs, liver bones and brain) breast cancer recurrences are not. It is unclear how many patients with early stage breast cancer experience a recurrence, although it has been reported to be approximately 30%.

It will be several years before we see meaningful data, but this is most certainly a step in the right direction. Patients and physicians alike are frustrated by the lack of reliable data on recurrence rates. Patients who develop metastatic cancer are frustrated that they are not “counted.” And much credit to Katherine O’Brien, a woman in Chicago who is living with metastatic breast cancer – she led the creation of a change.org petition, which collected nearly 12,000 signatures, requesting that federal and state registries begin collecting this information.

This most certainly is a step in the right direction to ensure that all cases of breast cancer, both initial and recurrent diagnoses, are captured. It’s also a testament to the power of the patient advocate!

Medscape article

4 January 2021

Earlier this year, I posted preliminary findings from our survey of the online “Going Flat” community – patients who underwent mastectomy without breast mound reconstruction. I am happy to announce that our peer-reviewed manuscript* has just been published in the Annals of Surgical Oncology.

I was inspired to research this topic as several studies have noted that patients who do not undergo reconstruction have poorer quality of life and satisfaction compared with those who have reconstruction. However, there are a growing number of support and advocacy groups dedicated to women who decline reconstruction, and we wanted to assess their experience. We partnered with patient advocates to ensure that we were asking appropriate and relevant questions. The results presented here are slightly different than the abstract – this is not uncommon as the abstract represents preliminary or “first review” findings. After doing a “deep dive” into the responses, our results are as follows:

Demographics and timing of going flat:

  • 931 women completed the survey, mean age was 49 (range 25 – 85)
  • Most patients were white (94%), had private insurance (71%), and were from the US (79%) although 22 countries were represented
  • 85% did not undergo breast mound reconstruction at the time of mastectomy
  • 15% initially had reconstruction that was subsequently removed

 Top reasons for going flat were desire to avoid a foreign body such as an implant, and perceived lower complication rate. 51% of patients stated that their breasts were not important for their body image.

Communication:

  • 65% stated that they received adequate information about their surgical options
  • 22% experienced “flat denial” – they were not initially offered the option to go flat, their surgeon was not supportive of their decision or tried to talk them out of the procedure, or extra skin was intentionally left in case the patient changed her mind.

Satisfaction with outcome:

  • 74% agreed or strongly agreed that they were satisfied with their surgical outcome
  • Strongest predictors of satisfaction were surgeon support of the patient’s decision to go flat and having adequate information about surgical options.
  • Patients who reported that their surgeon had an exclusive breast surgery practice were less likely to be dissatisfied
  • Factors most associated with flat denial include low level of surgeon support, high flat denial score, higher BMI (body mass index), and those undergoing unilateral (one side) versus bilateral (both sides) mastectomy

Our findings reveal a need for additional research into factors that impact patient satisfaction as well as for surgeon education on how to optimally support women who are not interested in breast mound reconstruction. In addition, surgeons should be trained in techniques to perform an aesthetic flat closure, or partner with their plastic and reconstructive surgical colleagues so that they can provide optimal results for their patients.

On behalf of my co-authors, we would like to thank all who shared and participated in the survey!

*If you are not able to access the full study and would like a copy, please email me: contact at drattai dot com

29 December 2020

Anxiety related to the possibility of cancer recurrence is common among those who have been treated for cancer. However, less common is the awareness that an entirely different cancer may develop, known as a second primary cancer (SPC). Reasons for second primary cancer include general risk factors such as aging (a risk factor for many cancers), lifestyle factors that may have contributed to the initial cancer such as smoking, alcohol intake and obesity, and genetic factors including known deleterious genetic variants (such as BRCA 1 or 2) or links between cancers even in the absence of a known mutation (breast cancer survivors are at increased risk for colon cancer).

In a study recently published in the Journal of the American Medical Association*, researchers used the SEER database and evaluated data from patients diagnosed with cancer between 1992 – 2011. They evaluated those who survived at least 5 years from their initial diagnosis. Among 1.54 million, the most common first primary cancers (FPC) were breast in women and prostate in men. For the entire cohort, approximately 10% developed a SPC. The risk of developing and dying from a SPC was greater than expected compared with the general population for 18 and 27 of the 30 FPC respectively among men and 21 and 28 of the 31 FPC among women.

Second primary cancer likelihood depended on type of primary cancer. However, as this was a retrospective database review, the researchers were not able to take into account initial treatment such as radiation or chemotherapy, that could influence the development of a new cancer. They found that cancers associated with smoking or obesity accounted for “substantial portions” of SPC incidence and deaths. These cancers included lung, bladder, oral / throat, colorectal, pancreatic, uterine (endometrial) and liver cancers.

In an accompanying editorial*, Ganz and Casillas noted that primary care providers and patients need to be aware of the possibility of second primary cancers. Relevant screenings should be ordered, and they noted that patients who had received both chemotherapy and radiation are well known to be at elevated risk for SPC. They also stressed that special attention should be paid to survivors of young adult cancers, and physicians need to be aware of their prior treatments and whether those treatments may convey an increased risk for SPC (such as radiation for Hodgkin’s lymphoma increasing subsequent breast cancer risk.

Ganz and Casillas commented that continued attention needs to be paid to the lifestyle factors that can influence cancer development including alcohol, tobacco and obesity. They noted that many FPC and SPC  related to tobacco are due to prior exposures, but there remain opportunities to reduce continued and future use, which could impact SPC risk especially among young adult cancer survivors. 

Perez et al, in a separate editorial*, proposed a more comprehensive approach to address  tobacco use and obesity including better and more widespread access to education, addiction management and obesity treatment programs. They also stressed that as some cancer treatments are carcinogenic, it is important to avoid imaging tests and some types of cancer treatments when not necessary or when less toxic alternatives exist. They concluded by stating that “A combination of less carcinogenic oncologic therapies and healthier lifestyles may help us protect future cancer survivors from facing cancer yet again.”

*If you are not able to access the full study and editorials and would like a copy, please email me: contact at drattai dot com

28 December 2020

There are unique challenges faced by young women with breast cancer. One is that they may not have had the opportunity to have children at the time of their diagnosis. Unfortunately, while there have been studies supporting the safety of fertility workup and egg / embryo harvesting prior to breast cancer treatment and pregnancy after treatment, these treatments are underutilized.

At the recent San Antonio Breast Cancer Symposium, a large meta-analysis of breast cancer outcomes after pregnancy was presented by Dr. Matteo Lambertini. The researchers reviewed 39 studies evaluating pregnancy after breast cancer. They found that patients with a history of breast cancer were less likely to become pregnant compared with the general population but their evaluation did not specifically evaluate women trying to conceive – it is possible that some did not try. Compared with women in the general population, those who had been treated for breast cancer were more likely to deliver prior to full term and to have lower birth weight babies.

Importantly, Dr. Matteo and colleagues found that there was no significantly increased risk of birth defects, and patients who became pregnant after breast cancer actually had lower risks of death and disease recurrence compared with those who did not become pregnant. In addition, they noted that pregnancy appeared safe regardless of BRCA mutation status, lymph node status, receipt of chemotherapy, and amount of time between breast cancer treatment and pregnancy.

An unrelated Swedish study also recently found that women who underwent fertility preservation had a higher live birth rate, and had better overall survival after breast cancer compared with women who had not undergone fertility preservation.

I very clearly remember early in my practice having a discussion with a 44-year old single woman who was childless. Her comment “I never thought I might want to have children until you told me it might not be possible” has stuck with me – we cannot make assumptions about our patients desires or preferences. The findings of these studies should serve as a reminder for physicians that fertility issues should be discussed with ALL women of child-bearing age before treatment is initiated. Patients should feel empowered to initiate the discussions if their oncologist does not. 

2 November 2020

Endocrine therapy is a key component of breast cancer treatment for those with both early stage and metastatic hormone receptor-positive disease. However, side effects can be significant, and many patients do not complete recommended therapy. Our recent study* showed that over 90% of women and men prescribed endocrine therapy experience treatment-related side effects, and approximately 30% discontinue treatment early. 

Musculoskeletal issues such as bone pain, joint pain and stiffness, and bone loss (osteopenia and osteoporosis) are among the most common side effects related to aromatase inhibitors (AIs). A recent review by Gupta et al* discussed several side effect mitigation strategies and the evidence behind them. The most effective included exercise including yoga, acupuncture, duloxetine (brand name Cymbalta), treatment breaks, changing to a different AI, or changing from an AI to tamoxifen.

In my accompanying editorial*, I noted that there are barriers to successfully managing side effects, including cost, access and adherence to structured exercise programs and acupuncture, reluctance to add a new medication which comes with its own side effects, and anxiety regarding treatment breaks both on the part of the patient and their oncologist. In addition, none of the side effect treatments have been found to be universally effective. In fact, in our survey, only 41% of respondents noted that any side effect management was effective.

Clearly a new approach is needed, focusing on open and active communication between the patient and his or her oncologist. Endocrine therapy is often the “last” phase of breast cancer treatment, and patients may not remember conversations held at the time of diagnosis regarding benefits and side effects of endocrine therapy. Re-visiting the role of endocrine therapy, along with associated side effects and management techniques should occur before treatment. The absolute benefits of treatment should be clearly discussed – statements such as “this will reduce your risk of recurrence by 50%” are not meaningful unless a patient understands what her absolute risk of recurrence is – are we trying to reduce a 50% recurrence risk down to 25% or a 5% recurrence risk down to 2.5%? 

Common and expected side effects, such as bone and joint pains, hot flashes, cognitive dysfunction (commonly termed “chemo-brain”) and impact on sexual function should be discussed, along with the evidence-based strategies to help manage these symptoms. In our study, patients noted that peer support (such as an in-person or virtual support group) as well as a website that provided clear information about side effects and management would be helpful, but these were not often provided. Patients also noted that an in-person or virtual visit with their physicians to discuss side effects would be helpful – this should ideally occur within 4-6 weeks of treatment initiation so that issues and concerns can be promptly addressed. 5-10 years is a long time to take a medication that is having a significant impact on quality of life – it is important that patient concerns are heard and addressed at every visit. 

*If you are not able to access the full study and would like a copy, please email me: contact at drattai dot com

23 October 2020

A History of #BCSM and Insights for Patient-Centered Online Interaction has just been published!

The Twitter hashtag #BCSM (breast cancer social media) was first used in July 2011, by patient advocates Alicia Staley and Jody Schoger, when they started a weekly breast cancer-focused chat. The hashtag is currently used not only for the weekly chats, which focus on education and support, but also to tag any information related to breast cancer.

We evaluated the use of the #BCSM hashtag from 2011 – 2019, and the findings included:

  • 7500 unique users tweeted using the #BCSM hashtag 830,000 times
  • 440,000 tweets were unique (not retweets or quoted tweets)
  • There were 4.2 million impressions, an indicator of potential reach or views

Looking at the annual statistics:

  • There was an increase in unique users from 602 in 2011 to 19,800 in 2019
  • Patient advocate accounts increased from 163 in 2011 to 1018 in 2016 (peak) to 794 in 2019
  • Doctor / Healthcare provider accounts increased from 96 in 2011 to 3016 in 2019

Additional statistics are provided in the (open access) manuscript. In the paper, we also discuss some of the challenges to community sustainability, including patients desiring a more focused support community (such as exclusively for Stage 4 or lobular breast cancer, or groups focusing on a specific racial / ethnic group), increasing “noise” due to increased numbers of participants, and moderator burnout. These will be important to address going forward not only for #BCSM, but for other online patient support communities.

#BCSM was the first cancer-specific chat, and has inspired the formation of other communities including for lung cancer, brain tumors, and gynecologic cancers. The hashtag and the community that has developed around it serve as a way to connect patients with each other and with physicians and researchers. Despite the challenges going forward, we have demonstrated that social media can be used as an important source of education and support for anyone impacted by breast cancer.

UCLA Newsroom: How a Twitter hashtag provides insights for doctors and support for people with breast cancer

17 August 2020

Last year, we asked the online breast cancer community to participate in a survey to assess experiences with endocrine therapy (ET). We are proud to announce that the study has now been published, in the Journal of Cancer Survivorship*.

First of all, I would like to thank all of the participants – we surpassed our accrual goals and this is the largest survey of ET use by patients who participate in online breast cancer communities! 

About the respondents:

  • 111 respondents did not start the recommended ET, and concern about side effects was the primary reason
  • Of those who took ET (2407), 2353 were women and 54 were men
  • Most of the women (74%) were post-menopausal
  • Mean age at diagnosis was 50 for women (range: 23-82) and 54 for men (range: 24-73)
  • Most (87%) were diagnosed at Stage 1-3
  • 100 (4.2%) were diagnosed with de novo Stage 4 / metastatic breast cancer
  • 12% of those diagnosed at an early stage eventually developed Stage 4 / metastatic breast cancer

Treatment:

  • Aromatase inhibitors (AIs) were the most commonly used medication
  • 91% of respondents reported at least one class of side effect that they felt was related to treatment (92% of women and 74% of men)
  • Musculoskeletal and general physical changes (such as weight gain and unhappiness with body image) were the side effects most commonly reported by women
  • Men most commonly reported sexual and cognitive / mood side effects
  • 33% (33% of women and 50% of men) discontinued therapy early
  • 9% reported that they took treatment breaks or discontinued therapy early either without informing their medical team or against their medical team’s advice

Side effect management:

  • 3 classes of side effect management strategies were felt to be most helpful:
    • Healthy diet, exercise, physical therapy
    • Complementary therapy such as yoga, acupuncture and meditation
    • Vitamins, supplements and herbs including medical marijuana 
  • Only 41% of respondents noted any relief from side effect management strategies

Medical team communication: (multiple responses permitted so this category did not add up to 100%)

  • 70% felt supported by their medical team in attempting to discuss side effects
  • 32% were made to feel that they should be better able to handle side effects or that the side effects were not related to treatment
  • 7% did not discuss side effects with their treatment team, feeling that there were more important issues to discuss, that there was not enough time, or they did not feel comfortable

Some other findings:

  • Respondents with early-stage and metastatic breast cancer reported similar side effects and management experiences, even though these two groups of patients have very different supportive needs
  • Men who responded to our survey were less likely to report side effects but more likely to discontinue therapy early compared to women – more information is needed about the experience of men with breast cancer and those taking endocrine therapy

Clearly, there is room for improvement in terms of medical team support and understanding. In addition, as only 41% of respondents noted any relief from side effect management strategies, we need more effective treatments for ET-related side effects. Thank you to all who participated in this survey! We are hopeful that your responses and comments will inspire researchers devote more time to addressing these important issues.

*If you are not able to access the full study and would like a copy, please email me: contact at drattai dot com

23 June 2020

The American Cancer Society estimates that as of January 2019 there were 16.9 million individuals in the United States living with a history of cancer, and 1.76 million newly diagnosed with cancer. Traditionally, patients return to their oncology team, primarily their medical oncologist, for follow up care after they complete active treatment. However, there are not enough medical oncologists to care for the anticipated increase in newly diagnosed patients as well as cancer survivors, and the American Society of Clinical Oncology and other organizations recommend shifting more of survivorship care to primary care physicians. 

The aims of our study are to determine:

  • Which member of the medical team is the primary point of contact for cancer survivorship care
  • Which member of the medical team does the patient prefer to be the primary point of contact for cancer survivorship care
  • Do patients perceive that their primary care providers are comfortable providing cancer survivorship care
  • Would patients be accepting of cancer survivorship care solely from their primary care provider
  • Are patient preferences influenced by age, age at diagnosis, type of cancer, treatments received, or severity (stage) of cancer

This survey is being conducted for research purposes. It is a UCLA research study, IRB# 20-001103.

Individuals who have been diagnosed with one or more cancers are eligible to participate.

This research survey should take approximately 20-30 minutes to complete and all responses are anonymous. The anonymous data will be securely stored by the principal investigator and may be used for future research studies. There is no industry funding or sponsor for this study. Results will be shared once data analysis is complete. We appreciate your time and thank you in advance for your participation.

  • Deanna J. Attai, MD
  • Larissa Nekhlyudov, MD
  • Matthew S. Katz, MD
  • Beverly A Zavaleta, MD

Survey Link: https://uclahs.az1.qualtrics.com/jfe/form/SV_aa46PeMQzIfJgAB

For questions regarding this study, you may contact the principal investigator Dr. Deanna Attai

  • By phone: (818) 333-2555
  • By email dattai@mednet.ucla.edu
  • Or by mail: 191 S. Buena Vista #415, Burbank, CA 91505

UCLA Office of the Human Research Protection Program (OHRPP):
If you have questions about your rights as a research subject, or if you have concerns or suggestions and you want to talk to someone other than the researchers, you may contact the UCLA OHRPP 

22 May 2020

Going Flat after mastectomy refers to not undergoing breast mound reconstruction after breast removal. Some patients are not candidates for reconstruction or it is not recommended, however many women may choose to “go flat” even when breast mound reconstruction is an option. This past October, we posted a research survey aimed at better understanding motivations to forgo reconstruction and to identify factors associated with postoperative satisfaction among patients who participate in online breast cancer communities.

The abstract and poster are now posted on the virtual meeting platform of the American Society of Breast Surgeons. Our findings include:

Demographics and timing of going flat:

  • 940 women completed the survey, mean age was 53 (range 25 – 84)
  • Most patients were white (94%), had private insurance (70%), and were from the US (74%) although 22 countries were represented
  • 85% (801/940) did not undergo breast mound reconstruction at the time of mastectomy
  • 15% (139/940) initially had reconstruction that was subsequently removed

 Top 2 reasons for going flat:

  • 72% desire to avoid foreign body such as an implant
  • 71% perceived lower complication rate from the surgery

Communication:

  • Only 64% were initially offered going flat as an option
  • 30% felt that their surgeon did not support their decision to go flat

Satisfaction with outcome:

  • 74% agreed or strongly agreed that they were satisfied with their surgical outcome
  • Age, race, bra cup size, and history of prior breast mound reconstruction were not associated with postoperative satisfaction
  • Strongest predictors of satisfaction were having adequate information about surgical options and surgeon support of the patient’s decision to go flat

Our findings reveal a need for additional research into factors that impact patient satisfaction as well as for surgeon education on how to optimally support women who are not interested in breast mound reconstruction.

It is important to note that any medical meeting abstract, whether an oral presentation or poster, has been evaluated by the meeting program committee but has not been subject to rigorous peer review as would occur with a formal manuscript submission. Abstracts (including ours) do not include the full set of results. It is not unusual for additional findings to be included in the eventual publication, some of which may be different than those presented in the abstract. However, we feel that these results are an important starting point for better understanding of patient motivations for going flat, and also point to a need for improved communication on the part of surgeons. We are in the process of completing a full analysis of the data and look forward to sharing the peer-reviewed publication when available. 

On behalf of my co-authors, we would like to thank all who shared and participated in the survey!

13 November 2019

The UCLA Center for Health Policy Research (UCLA CHPR) is developing a report on metastatic breast cancer, with the goal to drive actionable change in policy and practice. On Monday November 18th, the community will be asked to provide their thoughts for the UCLA CHPR team as part of their research study. The goal is to hear from patients, healthcare providers, researchers, caregivers, and advocates about the different types of barriers and challenges that patients with metastatic breast cancer may encounter when seeking and undergoing treatment. 

No idea too small or idealistic – we want creative, actionable solutions! The information gathered in this research study will be shared more broadly with other stakeholders, advocates, and policy makers. Please add your voice to this important conversation! This study has been funded by the California Breast Cancer Research Program

The study team may be contacted by sending an email to: ajscheitler@ucla.edu

If you’ve never joined a tweet chat, click here for information on how to participate in the conversation.

Discussion topics will include: 

  1. What are the most significant healthcare communication barriers faced by patients with metastatic breast cancer? 
  2. What are the most significant barriers to obtaining appropriate palliative care faced by patients with metastatic breast cancer?
  3. What are the most significant financial barriers faced by patients with metastatic breast cancer?
  4. What are the most significant barriers to obtaining disability faced by patients with metastatic breast cancer? 
  5. What health system or policy actions do you recommend to address barriers these barriers to care?
  6. Any other comments or suggestions!