by Lisa Nash
(Presented at the State House in Boston to Senators and legislative staff):
Hello, my name is Lisa Nash and I am here to speak with you about An Act Promoting Patient Engagement in Health Care Decisions.
I have personally had an experience where I was uninformed about my options and suffered serious medical, financial and very personal consequences as a result.
In 2006, I was diagnosed with DCIS, an early stage breast cancer and consulted with a very prominent Boston hospital for treatment options. I met with a variety of doctors including oncologists, radiologist and surgeons regarding my treatment options before scheduling surgery for a lumpectomy. Being a member of the Health Care for All Consumer Counsel in addition to my previous knowledge and experiences with the health care system, I researched my medical condition and believed I was an informed consumer, asking all of the “right” questions.
Six months later, upon receiving a follow up mammogram, I was completely shocked to learn that 5 titanium clips were left in my breast as “markers.”
In spite of my educated and very intelligent questions during my consultation with the various specialists at the Breast Center, I was not informed or even asked if I would want or approve of the clips being placed and left in my breast. In fact, the topic of leaving a foreign body, never mind 5 of them, in my breast was never discussed at all. When I brought this to my surgeon’s attention, I was told that the standard operating procedure of this particular hospital is to leave the clips in all lumpectomy patients and to not discuss it with them.
I requested that a follow up surgery be scheduled as soon as possible to remove the clips which had been causing severe itching and pain. The good news was that at least I knew what was causing the itching and discomfort after six months of uncertainty. The bad news was that my surgeon would not remove them nor would she admit that my symptoms could be caused by the clips. With much research, I found that other hospitals do not use them at all and found a hospital that was aware of patients complaining of itching and allergic reactions to titanium clips and were willing to remove them. The surgery to remove them was not as easy as planned. First, I had to endure the placement of 5 needle localization wires which was extremely painful, bordering on barbaric. Then after the surgery, I developed a hematoma, which is internal bleeding, that triggered a 2nd trip to the operating room for emergency surgery to locate and stop the bleeding. After an overnight stay, I was sent home to recover, bruised from neck to hip from the pooling of blood.
Long-term, this series of events has left me with an extremely disfigured breast that I will have to live with for the rest of my life.
If this bill were in effect before my surgery, I would have been informed and asked if I wanted titanium clips placed in my breast. I would have had the opportunity to discuss my long list of allergies to various substances and I could have expressed my wishes to not have anything foreign object left in my body. I would have been part of the decision making about my body.
I have since attempted to work with this hospital with the assistance of HCFA to get their standard procedure changed and to have all lumpectomy patients informed of the use of titanium clips used as “markers” but was completely rejected. I was told that it would take too much time to discuss this topic with patients regarding possible titanium reactions.
If this bill were passed, the issue of taking too much time would be resolved and patients would have the opportunity to understand and discuss all of the details of their condition.
We each have one and only one body to sustain us through our lives and therefore should be included and part of any decisions around what goes in it and what surgically is implanted in it.
Please remember my story when this bill comes to your attention. Remember my face and the pain and suffering I have endured for it could be you or one of your family member. Thank you.
Summary of Lisa’s Story in her own words:
My Family History
My Mom and Aunt died of Breast Cancer in the 1990’s – different types completely unrelated. Testing for BRCA was not available then. Both had multiple surgeries and radiation. Both died within 1 year of each other.
Advice from Dr. Susan Love, my Mom and Aunt’s doctor: Be Diligent with mammograms to catch anything early so I religiously got my yearly mammograms for 15 years – from the age of 29 – 44.
- 2007 yearly mammogram finds cluster of microscopic calcifications in my left breast
- I get a biopsy
- I get the phone call from the pathologist who tells me the dreaded words
YOU HAVE CANCER
I meet with breast surgeon and team of other doctors
I strongly explain my beliefs and wishes:
– I will NOT get Chemo
– I will NOT get Radiation
– I WILL get a lumpectomy
– I WILL treat with Alternative Therapies but NOT Traditional
I have the lumpectomy surgery
Pathology results find: • NO CANCER! • NO ABNORMALITIES AT ALL!
Totally NORMAL breast tissue!! Was the biopsy a False positive?
But…You Have Cancer
- Radiologist pushes for 4 weeks of whole breast radiation
- Radiologist tells me, “YOU HAVE CANCER” and
- “You have young children who NEED you” and
- “YOU MUST GET RADIATION TO SAVE YOUR LIFE”
- My pathology report shows no abnormalities or cancer
- False Positive, perhaps?
- If I were to get an invasive cancer and I get whole breast radiation now, I will not be able to get radiation in this breast again, so why would I radiate now and not save the “big guns” for when or if I really need them?
- Oncologist agrees that the pathology does not show any evidence of breast cancer
- Still Recommends Standard Breast Cancer Protocol:
- 5 years treatment with Tamoxifen
- continued mammography every 6 months
- yearly follow up with pancreatic cancer specialist
- genetic testing
- The possibility of a false positive?
- Waiting and watching?
6 months of Itchy
- My left breast feels extremely itchy and uncomfortable and does not improve with time
- I can’t sleep on my left side
- I wake up with scratch marks on my left breast
- SOMETHING IS NOT RIGHT!
Mammogram provides answers
- Shows 5 titanium clips in my left breast
- Placed in my breast by my breast surgeon without my informed consent
- Used as “markers” for radiation
- Didn’t I express my personal choices clearly?
- Didn’t I say I would NOT be getting any radiation?
No Discussion – No Informed Consent
- Why did the doctor feel it was OK to put something in my body without a discussion, never mind 5 items?
Breast Surgeon’s response
- My breast surgeon admits to placing 5 titanium clips in my breast without discussing with me that this is Standard operating procedure for lumpectomy patients
- I was ”too upset” to understand
- She “knew better” than I about what was “right” for me
- She would absolutely NOT be removing them and NO breast surgeon will remove them
- I should see a therapist as there is NO POSSIBLE WAY I am having any reaction to the clips
- And research
- And research
Find 100% Hypoallergenic Titanium Jewelry
- The puzzle pieces all fit together after I buy some Lia Sophia 100% Hypoallergenic Titanium Jewelry and fall asleep with it on
- My ears and neck are all red and inflamed
- If my ears and neck are red and inflamed from 1 day of having titanium touch my body, what does the inside of my left breast look like?
Dana Farber Cancer Institute
- I contact Dana Farber: 5 out of 8 of their breast surgeons believe in titanium reactions and are willing to see me to remove them
- NONE of the 8 breast surgeons at Dana use clips due to the “known issues”
- Why doesn’t this information get communicated 2 blocks down the street to Beth Israel Hospital?
Clip Removal Surgery Prep
- Barbaric – 5 needle localizations to determine location of clips
- I am told to walk to the pre-op with 5 wires sticking out of my breast
- There has to be a better way?!!
Surgery & More Emergency Surgery in one day
- I develop a gigantic hematoma in the recovery room
- My left breast begins to swell to the size of a watermelon
- Bleeding internally
- Rushed back to OR to stop bleeding
- Spend the night in the hospital
- Bruised like a blood blister from neck to hip
Did I have a false positive and have all of these surgeries been unnecessary?
Traditional Chinese Medicine (TCM)
- I see my TCM Acupuncturist who starts me on a custom herbal tea and acupuncture treatments
- My pre treatment bloodwork shows low levels of T & B Cells
- 1 month later follow up bloodwork shows my T & B Cells have tripled
Where has the bruise gone?
- 10 day follow up with Breast Surgeon
- My bruising is completely healed
- It should have taken over 6 months to heal
- Breast Surgeon questions:
– “What else are you doing alternative?”–Why did my body heal so fast?
- I share with my breast surgeon my TCM treatments
- She knows who my acupuncturist is and SUPPORTS my decision to treat alternatively with him
- She tells me to do everything he suggests
- But…she finds a very very small amount of DCIS in the pathology results
- She tells me that she HAS to tell me that my options are surgery and tamoxifen
- She tells me that she never wants to operate on my breast again
- She tells me that she continues to support my decision to watch and wait
- I will follow her anywhere she goes to get her support
Dented and misshaped left breast
- Surgery to remove the clips takes out more tissue than the lumpectomy resulting in:
– A very large difference in breast sizes–A big dent in my left breast
Follow my Breast Surgeon
- My breast surgeon leaves Dana Farber to head the Department of Breast Surgery at JFK Hospital in South Florida
- She respects and supports my decision to treat my body using a holistic alternative means not the traditional Western approach to treating DCIS
- She respects ME as a human being
- She is my Partner in decision making
- She Supports ME and my decisions about my body
I learn that…
- DCIS is NOT breast cancer
- Therefore DCIS should not be treated the same as Invasive breast cancer
- Watching and waiting is OK
- DCIS may or may not become an invasive breast cancer
- Yearly Thermography and/or Ultrasound instead of Mammograms
- Mammograms probably caused my DCIS
- Now, 12 years later, there is PROOF that what I thought and did was RIGHT
If I knew then what I know now
- I would NEVER have gotten the lumpectomy
- I would have watched and waited
- I would NOT have a deformed left breast to remind me daily that I was maimed by the medical system
- I would have never allowed the medical professionals to push me into a state of fear of dying of breast cancer like my Mom and Aunt when there was ZERO evidence to support it
I hope others can learn from my hard, painful, lessons and prevent what happened to me from happening to any other woman ever again. Overdiagnosis and Overtreatment caused me harm that can never be undone.