I had breast cancer 30 years ago.
Cancer is not something that brings a smile to your face.
But one component of my journey that does boost a grin was the card that I got after my first surgery from Dr. Alan Gaby. He’s been like a brother to me much of my life (after Dr. Jonathan Wright fixed us up on a date sure we were a match made in heaven!)
Dr. Gaby sent me a blank card, in which he had drawn a simple line drawing of two breasts.
Alan wrote, “I love these. Come here and detox with me.”
So, after all I am writing about below, I flew to Washington and we both did a long chemical detox at Dr. Walter Crinnion’s Environmental Clinic. But I digress.
For the first three years, my oncologist had me doing mammograms every 6 months. That’s a lot of radiation exposure. This was years ago and everybody knew much less about breast cancer back then.
I was the first woman in the U.S. to be diagnosed with my specific cellular type of breast cancer (histologic type) without a typical intraductal component.
My breast cancer oncologists in Santa Fe, NM and in Palo Alto, CA where I had my surgeries, told me they had never worked with this solo type of breast cancer before.
I did not feel comfortable getting treated in the exact same way that other breast cancer patients were, if I had an atypical cellular type that no one else had ever treated.
Thus, I sleuthed the literature for studies on this rare form of breast cancer.
Came up with one study on 30 patients and another on 60 patients. Both published in Nordic countries.
I kept trying to call the lead investigators of these research studies. Left multiple messages at their laboratories. There was also the time differences.
I had found the lump myself. In the shower. One month after a mammogram that came back perfectly normal.
It was not picked up on that mammogram.
The lump felt “not right” to me, but because the mammogram had come back negative and my breast doc was leaving on a 6 week vacation, she told me it was most likely nothing. She said wait till I come back.
Being proactive, I went to a different doc and had a immediate lumpectomy. It came back positive for pure mucinous adenocarcinoma.
Began looking at treatment options. Radiation was recommended.
In Santa Fe, my radiologist was the wife of my oncologist.
Since neither she or he had treated this exact type of breast cancer before, I kept trying to reach the primary investigators on these studies back in those distant Nordic countries.
I was sitting on the table about to initiate radiation, with the grid lines already drawn on my chest via fluoroscopy, when my phone rang atop my purse on the chair against the wall.
The phone lite up and I could see across the radiology room that it was a foreign number. Jumping up, grabbing the phone, almost shouting hello.
It was one of the doctor’s heading the research on this tumor type on 60 Nordic women. Score!
My radiologist was behind the screen turning knobs on the machines.
The Nordic doc said, “In our country, radiation is contraindicated for this tumor type. Mammography never picks it up. It’s the one breast cancer type not picked up by this imaging. We can only find it through palpation (feeling breast tissue with educated fingers).
“Radiation causes fibrosis, that in essence hides this specific tumor type from digital detection. I don’t recommend that you get radiation. You would never be able to pick up whether this tumor came back in that breast.”
With the radiation grid still drawn on my chest and underarm area, I reported the whole word-for-word details of trying to reach this dude and his finally calling at this midnight hour. And exactly what this Nordic breast cancer doctor, that had experience with this tumor type, recommended.
Starting to put on my clothes to walk out, my radiologist said, swear this on a Bible, “I don’t give a f… what this idiot in another country says. If you don’t get radiation right now, you are going to f… die.”
Swear to god.
In her mind, radiation would prevent recurrence. Save me. But she had never treated this exact type of tumor before.
For some reason she felt so strongly about it, she spoke that outrageously strongly. Also, of course, it was Santa Fe. Folks are a bit more out-of-the-box in the high desert over there. LOL.
I stood strong, “I’m out of here.”
In indigenous cultures, this is called “throwing bones”.
Members of these villages that have acted in judged-to-be horrific way, are put in a circle, surrounded by chiefs and medicine folk and others, bones of animals surrounding them.
These guilty members are told they are going to die. Their deaths are chanted. No knifes or stones or weapons. Just words.
The blameworthy folks in the center of the circle so believe what they are told, what they hear, that within a short time, usually 5 to 7 days, they simply die.
From “bone throwing”.
This radiologist was throwing bones at me.
Have since learned to try with all my might to fight against bone throwers.
Now, fast forward to today.
Once you have one cancer you are more prone to another cancer compared to someone who never has had cancer. Same with breast cancer. Having that specific type of cancer doesn’t mean I won’t get a different type of breast cancer.
Some monitoring through imaging makes protective sense.
But how much imaging?
Every year in December, in my great state of Texas, there is a breast cancer symposium in San Antonio.
Breast cancer researchers come from all over the world to share their new and hopefully helpful science.
This past December, 2023, there was new science on the schedule of mammography of women who are breast cancer survivors.
It was labeled: Some Breast Cancer Survivors May Safely De-escalate Mammography Three Years After Surgery
SAN ANTONIO – Women 50 or older who de-escalated to less-frequent mammography three years after curative surgery for early-stage breast cancer had similar outcomes to women who received annual mammography, according to results from the Mammo-50 trial presented at the San Antonio Breast Cancer Symposium, held December 5-9, 2023.
Both U.S. and U.K. guidelines recommend annual breast cancer screening following surgery to remove early-stage breast cancer.
In the U.S., annual mammography is recommended indefinitely,
And in the U.K., it is recommended for five years, followed by screening every three years for patients 50 years and older.
I had just been told by my internist that if I didn’t get a mammogram, as I hadn’t for a few years, she couldn’t see me anymore.
I sent her this study and she agreed to keep seeing me.
You gotta be proactive!
Long-term annual screening may not be necessary, explained Janet Dunn, PhD, a professor of clinical trials at the University of Warwick in the U.K.
“De-escalation of mammographic surveillance reduces the burden on the health care system, decreases the inconvenience for women having to undergo these mammograms, and reduces the associated stress of waiting for results,” Dunn said.
Let alone reducing ionizing radiation.
Screening-related anxiety is known to be worse for breast cancer survivors compared to women without a history of breast cancer. This is exactly right!
In the phase III Mammo-50 trial, Dunn and colleagues enrolled 5,235 women who had undergone curative surgery to remove their cancer, were free of recurrence three years post-surgery, and were 50 years or older at the time of diagnosis.
Participants were randomly assigned 1:1 to receive annual mammography or less-frequent mammography, defined as every two years in patients who underwent breast conservation surgery and every three years in patients who had a mastectomy.
After five years of follow-up, the breast cancer-specific survival was 98.1% and the overall survival was 94.7% among patients in the annual mammography arm.
For patients receiving less frequent mammography, the breast cancer-specific survival was 98.3%, and the overall survival was 94.5%.
Similarly, at five years, 5.9% of patients in the annual mammography arm and 5.5% of patients in the de-escalation arm had experienced a recurrence.
These results show that de-escalation did not worsen the outcomes.
“The trial demonstrated that the outcomes from undergoing less frequent mammograms were no worse than undergoing annual mammograms for this group of women,” Dunn said.
This study was funded by the U.K. National Institute for Health and Care Research through the Health Technology Assessment program and sponsored by University Hospitals Coventry and Warwickshire NHS Trust. English study. Not yet accepted by the U.S.
This study says if you have gone through breast cancer treatment and are now 3 years out, with no sign of disease, a three year mammography schedule may be justified.
But this is not standard of care in the U.S. Yet.
Because I sent this study to my internist she said, okay. Every three years for you.
Knowledge is power.
But it takes guts to go against what an educated doc in a white jacket is telling you. Or in my historic case, yelling at you.
But my radiologist 30 years ago warned me with angry words, which she thought were meant to help save me… “If you don’t do radiation, you are going to f…. die.”
I think about that. Often.
This was yet another pivotal experience in my life, egging me on toward my karmic path.
I have many more “stone stories” somewhat resonant of this, I hope to share over time.
Truth is stranger than fiction.
But you gotta be your own health advocate. To do this in a way that helps you, not hinders you, you gotta have your finger on the pulse of science.
Yet so much “science” is being removed off of regular press platforms.
Funny how I wrote this Substack the day before You Tube took down my podcast on Hormone Wars. This was on the re-analysis of the Women’s Health Initiative. But YouTube claimed it was on abortion. Not so!
The fickle finger of my life to do what I do… keeps unfolding.
Up with health freedom and health information. And, staying informed by those you have come to trust.
Let’s have sane, polite, informed discussions from both sides, in town meetings, podcasts, forums, etc., and not ban anyone.
Knowledge is power. And fights bone throwing. Just saying.
Dr. B.
Reference:
From American Association of Cancer Research
https://www.aacr.org/about-the-aacr/newsroom/news-releases/some-breast-cancer-survivors-may-safely-de-escalate-mammography-three-years-after-surgery/#:~:text=SAN%20ANTONIO%20%E2%80%93%20Women%2050%20or,Cancer%20Symposium%2C%20held%20December%205
Some doc just sent this to me. Anyone know if it’s still accurate?
October 16, 2016
Mammography Screening Is Being Abolished in Switzerland
Shelly Laine
Sep 08 Posted by Alexander Mostovoy in Breast Health
The Swiss Medical Board reviewed all of the available evidence and released a report in February of 2014 stating the evidence does not support a common medical mantra that mammograms are safe and capable of saving lives. It appears that mammography may prevent only one (1) death for every 1000 women screened while causing harm to many more. In their review the Board advised the quality of mammography screening should be evaluated and women should be informed in a ‘balanced’ way, about the benefits and harms of screening.
The Swiss Medical Board recommended no more systemic mammograms based on several important factors that where reviewed. Statistics that are being sited in favour of mammography are based on outdated clinical trials. The first mammography trial began more than 50 years ago and the last trial was conducted in 1991. The benefits that were found during these trials were from another era of breast cancer treatment. Yet in the past two decades the treatment has been significantly improved in terms of breast cancer mortality. Thus the modest benefit of mammography screening that was shown in old trials most likely will not occur if the same trial was conducted today.
The most recent study published in the British Medical Journal involved 90,000 women followed for 25 years, found that mammograms had absolutely no impact on breast cancer mortality. In addition, this study found that 22% of cancers were over‑diagnosed, leading to unnecessary treatment with surgical interventions, chemotherapy and radiation.The Swiss Medical Board experts also noted a very significant discrepancy between women’s perceptions of mammography benefits and actual reality. Whereas women had a perception that mammography prevented 80 deaths per 1000 women screened. The actual figures show that only 1 (one) breast cancer death per 10,000 women can be averted.
It is improbable that women can make an informed decision based on such an overestimation of the benefits of mammography. The great majority of women and sadly even medical professionals are unaware of the fact that the science backing the mass screening of mammography is not there to support it. Unfortunately the message of the Pink Ribbon Industry perpetuates the message that skipping annual mammogram is dangerous and irresponsible.
The truth be told, that there is more and more research and evidence that shows that more women are being harmed by regular mammograms than are saved by them. It is therefore questionable who’s irresponsible; women who base their decisions on latest research and evidence and therefore avoid mammography or the Pink Ribbon Industry that continues to lobby and promote mass screening with mammography based on outdated facts and dogma.
The evidence of harm and the lack of benefit led the Swiss Medical Board to recommend abolishing mammography as a mass‑ screening program. This is the first step at making an objective evaluation not influenced by politics and industry’s propaganda. One can only hope that other countries and policy decision makes will take this message seriously.
There are many options available to women when it comes to breast cancer screening, such as Ultrasound, MRI and Breast Thermography. Each of these methods have their strengths and weaknesses and the choice needs to be made available to all women; however, the most important choice that women can make is to focus their attention on prevention of breast cancer rather than early detection.
AMEN!! Beautifully said. It is hard to be outside the box and you give us all courage to continue. There is risk of isolation and name calling.. Stay the course.
Much Love