Our team at the Sydney School of Public Health, Australia, is carrying out a research study to explore women’s awareness of the term ‘overdiagnosis’.
We are interested in talking with women anywhere in the world who:
Have been diagnosed with breast cancer, following breast screening
Had no breast symptoms at the time of diagnosis
Received the diagnosis at least 6 months ago, and were 40+ years at the time
Were aware, or later became aware, of the possibility of screen-detected overdiagnosis, and have considered that possibility in relation to their own breast cancer.
If this describes you, and you would consider being interviewed, please read more about the study here: Participant Information Statement and contact us: EXPRESSION OF INTEREST FORM. If you agree to be interviewed, a researcher will interview you during one 30-45 minute interview by telephone or Skype.
Please do not hesitate to contact us directly if you have questions about this study, at firstname.lastname@example.org or via phone +61 2 9351 5103. Thank you very much for your time and help.
Recording consultations with physicians is extremely valuable, especially with regards to obtaining results of screening or diagnostic tests, biopsies, surgeries, or discussions about future cancer risks, or potential treatments.
Recording the consultation enables:
ability to glean important information missed or not comprehended due to information overload, shock, language or hearing issues, etc.
ability to share with loved ones who may not be able to attend the consultation
improvement in patient recall and understanding of condition, risks, treatments
Learn how to use your phone’s “Voice Memo” app and practice
Breast Cancer Decision Services at UCSF is an exemplary program. I experienced first-hand how valuable their services were when I went there for a 2nd opinion with Dr. Laura Esserman in 2012. A PhD student contacted me to discuss my list of questions ahead of my scheduled appointment. She attended the consultation with me, recorded it, and took notes. After the visit, she sent me a summary of her notes and the recording of the visit.
I have listened back to recordings of several physician consultations and found myself hearing and learning new things that I may have missed at the time of the appointment. I did have one physician (a medical oncologist) who was not agreeable to recording the consultation. I wondered why and did not continue to see this physician.
In 2015, I listened back to a recording from my phone consultation with expert pathologist Dr. Michael Lagios who I consulted with for a 2nd pathology opinion in 2011. I thought it was an amazing amount of information that could really help women if they could listen to my questions and his answers. He kindly granted permission for me to share the 43 minute recording on DCIS 411:
“Health care overall is moving toward greater transparency and patient recordings are going to become more common. That means there would be tremendous benefit to patient advocacy groups, health care organizations, providers and policymakers working together to develop clear guidelines and policies around the responsible, positive use of open recordings.”
“39 of 50 states as well as the District of Columbia are single-party jurisdictions—where only one party needs to consent. In other words, in these jurisdictions, if somebody wants to record another person—including a clinical encounter—it’s legal.
There are 11 all-party-jurisdiction states in which both the
clinician and patient must both consent to recording a conversation:
California, California, Florida, Illinois, Maryland, Massachusetts,
Michigan, Montana, New Hampshire, Oregon, Pennsylvania, and Washington.
In these states, it’s a felony for a patient to record a physician
In single-party jurisdictions—or most of the United States—if a
patient asks to record a clinical encounter and the clinician refuses,
the patient can proceed to record the encounter anyway. The clinician
must then choose to continue or terminate the encounter.
In all-party jurisdictions, the clinician must be asked by the patient to record the clinical encounter. Any illegal recording can then be reported by the clinician to the authorities. Possible repercussions include compensation for harm, attorney’s fees, and other costs, with disseminating the recording via the Internet being considered an additional violation.”
Gigerenzer states: “Information about the actual benefits and harms of screening has been held back for years. Pink ribbons and teddy bears, rather than hard facts, dominate the discourse.
Why is that? It’s not because the information is hazy. No other cancer screening has been studied so extensively. The fact box below outlines benefits and harms. It is based on half a million women in North America and Europe who participated in randomized clinical trials, half of whom attended screening and half of whom did not. The fact box shows what happened to them 10 years later:
Trick #1: State that screening reduces breast cancer mortality by 20% or more, because it sounds more impressive than explaining that the absolute risk reduction is 1 in 1,000.
This trick has been used for years in pamphlets. You might think, well, it’s not much, but at least one life is saved. But even that is not true. The number of deaths from all cancers, breast cancer included, is the same in both groups, as seen in line two of the fact box. And that leads us to trick #2:
Trick #2: Don’t mention that mammography screening doesn’t reduce the chance of dying from cancer. Talk only about the reduction in dying from breast cancer.
Often, and particularly if a person had multiple cancers, the exact cause of death is unclear. For this reason, total cancer mortality is the more reliable information when you look at it in terms of the larger goal: saving lives. In plain words, there is no evidence to date that routine mammography screening saves lives.
Now let’s look at the harms.
Trick #3: Don’t tell women about unnecessary surgery, biopsies and other harms from overtreatment. If you are asked, play these down.
The first way a mammogram can harm women is if it
comes back with a false positive, leading to invasive and unnecessary
biopsies. This isn’t the rare fluke most people seem to think it is.
This happens to about a hundred out of every thousand women who
participated in screening. Legions of women have suffered from this
procedure and the related anxieties. After false alarms, many worried
for months, developing sleeping problems and affecting relationships
with family and friends.
Second, not all breast cancers are life-threatening. Women who have a nonprogressive or slowly growing form that they would never have noticed during their lifetime often undergo lumpectomy, mastectomy, toxic chemotherapy or other interventions that have no benefit for them and that are often accompanied with damaging side-effects. This happened to about five women out of a thousand who participated in screening.
There’s one final trick I would like to share with you.
Trick #4: Tell women about increased survival. For instance, “If you participate in screening and breast cancer is detected, your survival rate is 98%.” Don’t mention mortality.
Susan G. Komen uses this trick, as do many health brochures. How can 1 in 1,000 be the same as 98%? Good question. Five-year survival rates are measured from the time that cancer is diagnosed. What this means is that early diagnoses only seem to increase the rate of survival; it doesn’t mean that 98% were cured, or even lived longer than they would have without an early diagnosis from a mammogram. What’s more, screening also detects nonprogressive cancers, which further inflate short-term survival rates without having any effect on longevity. For those reasons, survival rates are often criticized as misleading when it comes to the benefits of screening. What you really need to know is the mortality rate. Again, look at the fact box, which uses neither 5-year-survival rates nor other misleading statistics such as relative risk reductions.
Thanks to these tricks, quite a few doctors (perhaps yours?) are inadequately informed as well. But again, why is the misinformation so widely spread? Like those who refused to peer through Galileo’s telescope for fear of what they would see, many who have financial or personal stakes in screening and cancer treatment—from medical businesses to patient advocacy groups sponsored by the industry—close their eyes to the scientific evidence and cling to a one-sided view.
Mass screening is not the key to saving lives from cancer; the effective means are better therapy and healthier lifestyles. About half of all cancers in the U.S. are due to behavior: 20-30% to smoking; 10-20% to obesity and its causes, such as lack of exercise; and about 10% and 3% to alcohol in men and women, respectively. With respect to breast cancer, less alcohol and a less sedentary lifestyle with more physical activity, such as 30 minutes of walking a day, can help.
Until five years ago, cancer screening brochures from organizations in Germany (where I live) used all four of the above tricks to advocate screening. That is no longer so. All misleading statistics have been axed, and for the first time harms are explained, including how often they occur. However, none of the organizations have yet dared to publish a fact box, which would make the evidence crystal clear to everyone. Then, every woman could finally make an informed decision on her own.”
Thank you Gerd Gigerenzer for explaining all the TRICKS –and shining a light on the TRUTH.
Women diagnosed with DCIS, also known as “stage ZERO” breast cancer, are often rushed into extremely aggressive treatments (surgery, radiation and drugs) that actually have no survival benefit… yet this information is often not told to them.
Instead women are given confusing “risk reduction” statistics with each of the “standard of care” treatments. Emphasis is purely on decreasing a woman’s risk of a future DCIS or invasive cancer. The percentages used are often misleading as the #s may be relative risk #s rather than absolute #s.
In addition, side effects of all the treatments are downplayed.
Dear Healthcare Providers:
Women deserve to be fully informed about all potential side effects of each treatment as well as the survival benefit for each treatment.
“Radiation for DCIS is prophylactic; it reduces the risk of invasive recurrence, the only lethal form of breast cancer, while increasing the probability of eventual mastectomy. The absolute magnitude of both effects is modest, such that personal patient preferences should drive decision-making. – Radiation therapy for ductal carcinoma in situ: A decision analysis
While tamoxifen after local excision for DCIS (with or without adjuvant radiotherapy) reduced the risk of recurrent DCIS (in the ipsi- and contralateral breast), it did not reduce the risk of overall mortality. – Postoperative tamoxifen for ductal carcinoma in situ.
Warrick and Allred in their editorial piece conclude that tamoxifen is probably overused, and advocate more selective use. They particularly note that the major benefit would be seen in patients who are younger (premenopausal) with extensive high grade disease and/or narrow margins, and clearly only those that are ER positive. In conclusion, the clinical benefit of tamoxifen intervention based on the randomized trials is meager at best. There appears to be no benefit, at least in the UK/ANZ trial for tamoxifen amongst irradiated patients, and the benefits when claimed are very small. – Tamoxifen as an Adjuvant Agent for Ductal Carcinoma In Situ (DCIS)
Over 400 breast-implant recipients have developed a rare blood cancer called anaplastic large cell lymphoma (ALCL) and a dozen women have died.
Allergan, based in Dublin, Ireland, said it has agreed to remove its Biocell textured implants from the market after the FDA asked for their recall.
“Breast implants often require repeat surgeries and they should not be considered lifelong devices. About 1 in 5 women who get implants for cosmetic reasons need to have them removed within 8 to 10 years, according to the FDA. Yet woman are not fully informed.”
With mastectomies and double mastectomies on the rise, are women fully informed? One woman is working hard to make sure…
“These textured implants are used more often with reconstruction than cosmetic surgery” – Dr. Jen Ashton, Good Morning America:
Lymphedema is Not Just an “Unfortunate Side Effect” of Lymph Node Removal
“Imagine a skin burn where ordinarily the lymph cells rush to the area. In a sluggish lymphatic system − one that has sustained damage − there is no “rush” involved. The clogged or swollen area does not easily allow the appropriate immune cells to reach the affected area, and healing can take much longer.
People with leg or lower body lymphedema may find walking difficult
or painful. Some people may not be able to pick up their children or
grandchildren due to weakness and swelling in their arms. Over time,
sensations in the areas may be reduced. Anyone who has had lymph nodes
removed is at much higher risk of serious infections like cellulitis,
which can lead to sepsis.
And lymphedema can occur at any time. There is no time limitation on the development of lymphedema (the swelling and visible sign of damage to the lymphatic system). And current treatments are only variations on temporary reduction in swelling.”
Did not reduce the likelihood of dying from breast cancer
Did not decrease the chances of developing invasive breast cancer
Did not decrease the number of additional cancer treatments
So why do so many women undergo sentinel lymph node biopsies?
“Proponents of sentinel lymph node biopsy cite concerns that occult micro-invasive disease within the DCIS may not be detected via other methods. Also, the sentinel lymph node biopsy is included in the Centers for Medicare & Medicaid merit-based incentive payment system for invasive breast cancer,” Shi-Yi Wang, M.D., Yale School of Public Health associate professor and the study’s lead author said. “This might create a financial incentive for providers to perform these biopsies even for non-invasive conditions.”
“Some surgeons say that sentinel node biopsies are no big deal, but I disagree. All interventions have consequences. More is not better. More is just more, and in this case, more is worse.” – Laura Esserman, professor of surgery and radiology at UCSF and director of their Breast Care Clinic (not involved in the study).
Dr Wang, cautioned that the findings may not be generalizable to young women and that more research is also needed to determine if sentinel lymph node biopsies benefit patients with a high-risk type of DCIS.
I asked if she had anyone else like me. She said she had only one 85 year old lady who refused radiation therapy and came back every couple of years to cut more DCIS out. Then she said:
“Women like you don’t come back.”
Eighteen months later, the alarms went off from a “highly suspicious mammogram.” I ended up getting scared into surgery. Yet, still a “close margin” of low-risk DCIS remained. Now this surgeon said:
“Your breast is like spoiled soup. It’s not worth saving. “
“Don’t be stupid Donna, at least do 3 weeks of radiation.”
That was over 8 years ago…and I finally learned my lesson to never go back to a doctor who was not in alignment with my values, preferences and research findings.
Over the last 10 years, I have heard from many women who say they felt “psychologically terrorized” by health-care providers. One woman wrote to me:
“After the surgery, the surgeon talked to my husband and got in his face and said, “If she doesn’t do the radiation and medicine she is playing with fire.” He scared the crap out of my husband and later that evening my husband (with tears in his eyes) came to me and said, “Honey I don’t want you to die, please do as the doctor suggests.” The fear mongering was not only applied to me but to my family members as well.”
She was very aggressive and alarming in her predictions of my health situation and stated my re-occurrence rate was 40+% with no radiation or the 5 year pill (which is now the 10 year pill.) All her suggestions were negative, alarming and requiring the most extreme and aggressive of treatments, (radiation and the pill.) She said, “good thing this in the right breast as if it were on the left side we would have to be careful about heart damage. She didn’t tell me you only get one shot at radiation in an area nor the hazards of radiation on my breast tissues, or the future possible effects, etc.
*Remember, this was a one-time consultation and during this visit I was checked in (almost like a hospital visit, they took my picture for their file, etc.) AND they automatically set me up assuming I was to be an on -going patient even though I didn’t agree to this during the consult. Also during this visit they told me, “We have our own pharmacy with our practice so you WILL be purchasing the medicine from us and not a regular pharmacy. They even gave me an estimate of what this medicine would cost me out of pocket, around $250.00 a month. Even though I DID NOT agree in any way or give any verbal confirmation or indication that I was coming back to her, they were assuming that I was going to sign up. *My intuition was going off at this point as I sensed some sort of corporate greed mentality going on. She wanted to start radiation right away and at this point I started crying and said I didn’t think I could mentally handle it, that I needed to do my research to see if I really needed this. She backed off and said “Well lets start in November then.” There was no talk or consideration of thinking this over. It was just assumed I would do this regardless.”
“Incorporating patient input is important for all medical decisions and is essential for decisions about preference-sensitive conditions—those for which two or more valid treatment choices are available to most patients, even if one of those choices is to forgo treatment.”
“Positive framing emphasizes healthy outcomes and the absence of disease, while negative framing emphasizes the presence of disease. A positive frame seems preferable for most patients. For example, after 10 years, more than 98% of women diagnosed with DCIS will not die of breast cancer. We can also describe this as 980 of 1000 women diagnosed with DCIS will not die of breast cancer in 10 years.”
Introduce informed consent at the time of mammography invitation to introduce the concept of carcinoma in situ and the potential harms from overdiagnosis and overtreatment of otherwise indolent DCIS.
For women diagnosed with DCIS, place the patient’s risk of developing an invasive breast cancer in the context of developing other diseases. “Women rarely die of breast cancer after a diagnosis of DCIS; they are more likely to die of many other causes.”
Use absolute risks rather then relative risk #s.
Listen carefully for values and what patients say (e.g,: “I hate medications.”)
Recognize and validate emotions — Acknowledge that a diagnosis of DCIS can be frightening and confusing. Check to see if she understands what you have said or if she has any questions.
Use non-medical language and simple words that are easy to understand.
Consider the patient’s frame of reference, and use concepts that are inclusive and culturally appropriate.
Address uncertainty related to DCIS and treatment options in addition to uncertainties about natural progression of DCIS if left untreated.
Identify and address misperceptions. Separate scientific data from sensational factoids.
Emphasize the potential for positive outcomes. This approach can greatly reduce patients’ anxiety when they hear the initial diagnosis of DCIS.
Make certain that the patient does not rush to make treatment decisions. Let her know there is time to make decisions and encourage her to come back to discuss options after she has had time to think about and discuss them with family and friends.
Encourage use of decision aids and have patients write down any questions for follow-up visit.