NO Informed Consent — Harmed by 5 Titanium Clips in Breast — DCIS Patient Shares Her Story and Advocacy

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.

Medical Advice

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.

Micro-Calcifications

  • 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

Doctor’s Appointments

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 

Lumpectomy

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 Response:

  • 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

  • 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

What about…

  • 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

I research

  • And research
  • And research
  • And…

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? 

Support…Finally

  • 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

My Options

  • 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.



About dp4peace

I was born and raised in New Jersey and moved to the San Fernando Valley of Los Angeles when I was 12. I graduated with a BA in Journalism/Advertising from San Diego State University. After a short stint in magazine ad sales in LA, I was offered my dream job working for Club Med. I spent two years working at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met while working at Club Med in Ixtapa, Mexico. We returned to "real life/jobs" for three years before we embarked on a two year honeymoon around the world. Together we wrote a book called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of "Cheatnotes on Life: Lessons From The Classroom of Life," a quote book for new graduates. Glenn & I live in San Diego with our two boys: Skyler, the Yogi and Cody, the Buddha! I enjoy running, yoga and working on projects that bring more peace, health and light to our world.
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12 Responses to NO Informed Consent — Harmed by 5 Titanium Clips in Breast — DCIS Patient Shares Her Story and Advocacy

  1. Janet says:

    Dear Lisa, You have an incredible story and sorry to say none of this surprises me. The over treatment of DCIS continues on it seems to be more and more difficult to find any doctors that will listen. I myself was first diagnosed 20 years ago with DCIS at age 44 left breast low to intermediate grade cribriform pattern. It was found on a mammogram. I endured a painful needle localization and two surgeries. My surgeon was so sure I would have to have a mastectomy that he cut me in a vertical direction instead of horizontal and I was so badly bruised. I was told the margin was close but in the end it was recommended that I have radiation. I believe it I hadn’t been so frightened by the surgeon I would not have done radiation. This decision will affect me down the road. I continued with mammograms and in 2012 was diagnosed once again with DCIS in the left breast again in a completely different area so it was considered a new diagnosis and not a reoccurrence. Devastating news to say the least. I had few options and traveled to Boston and was basically told if I were older they would have recommended another lumpectomy and to watch and wait. But because I was younger mastectomy was recommended. I was not happy about it since the DCIS was the same low to intermediate cribriform with some necrosis after a another lumpectomy. The margin was close but not involved. Still they wanted me to do a mastectomy. After being worn down by my doctor and pretty much the same approach from the doctor in Boston and with much reluctance I had the surgery. I had a LD Flap done since it was the best option for me given the many surgeries 4 in all and the damage done to the breast. I was also told that radiation limited my options so this was pretty much all I had left. It turned out pretty well. I hate the scar on my back but it continues to fade and the tightness from the surgery has diminished. The worst part of all was that in the end the final biopsy report turned out to be not only NO SIGN OF CANCER BUT NO RESIDUAL DCIS EITHER!! So I had an unnecessary surgery I could have just had the lumpectomy maybe some repair done, just a terrible outcome. After enduring 9 surgeries altogether including all the lumpectomies and reconstruction and radiation for a non life threatening condition, I made a decision to no longer do mammogram screenings. I lost my left breast I plan to keep my right one that was 7 years ago. I have a physical exam once a year by the breast specialist/surgeon and that is it. I have made peace with my decision and have come to terms with the unnecessary loss of my left breast. I keep active and healthy and so far all is well. I so appreciate your effort and willingness to fight back. I have made a conscious effort to never allow myself to be over treated again. I have no breast cancer history in my family my mom passed away at age 100 in 2015. I only fear that the over treatment will cause me a problem in the future not the tiny DCIS cells. Thank you for sharing and fighting back we all have to question these over the top treatments for non cancer. You will continue to heal it is a lifelong journey.

    Like

  2. ann galluzzo says:

    I have a titanium marker now I’m scared

    Like

  3. informedconsent2014 says:

    Wow what a story Lisa! And Janet too! It is warriors like you who are moving the goalposts and waking women up about informed consent (that’s been my screen name here on DCIS411 for years!) and overtreatment of DCIS. I had long ago made a decision that I would refuse titanium clips if/when I was ever faced with a lumpectomy decision, and this story just confirms my suspicions. So interesting to know that Dana Farber doesn’t use them at all, because they are aware of the allergic reactions. And Janet, I refused biopsy on microcalcs for eight years, until the radiologists finally admitted this year that the calcs appear to be “benign”. Yay for victory! Watching and waiting is a viable approach and I know that more and more women are going to stand up for themselves and refuse to be panicked into DCIS overtreatment!

    Your stories are empowering! I just wish you hadn’t gone through all the hell you’ve experienced to learn what you’ve learned, but I know it will help others down the road. We are all in this together! Love and light to you!

    Like

  4. Joy Stucke says:

    I have had almost all the same experiences as you Lisa!!! I chickened out and did not have the lumpectomy. I won’t go into my whole ordeal but now I have 3 clips. I keep saying they are bothering me but I keep getting told that its impossible. I feel so bad for you and I feel just sick about what has been done to me. You can tell this is just a big money making proposition and the medical community is not going to give this up! They get furious if you question them. Why is there no one tracking the women that choose a different path? They do not want to give up the gravy train. I wish there was like a class action suite that could be brought against them. They made it seem like I was going to die tomorrow. I only have MRI’s now and for three years they can see nothing!

    Like

  5. Laurel says:

    Wow, thank you for sharing all you went through. I also was diagnosed with DciS. I had a lumpectomy and radiation and I have lots of itching in my breast!

    Like

  6. Tamar says:

    This website is a huge revelation and help in understanding how to go about dealing with the medical industry. i’ve been having more or less regular mammograms since my late thirties (I have dense breasts) and my last screening revealed micro calcifications in both breasts. There was immense pressure to do an immediate biopsy but I resisted, especially after reading about the titanium clips. Radiologists at Weill Cornell, Breastlink, and Mt. Sinai here in New York, have refused to do a biopsy without the clips and I’ve just been going from one opinion to another without any progress because I won’t give in. Could someone please recommend a less-aggressive doctor in New York City? There simply must be one… Another thing that worries me, is that if I do decide on active surveillance, won’t the extra radiation every 6 months harm me? MRIs apparently can’t detect the microcalcs. I’d greatly appreciate some advice or info as I’m determined not to overtreat myself, but I sill want to make the right choices. Thank you so much for this amazing site and support group!

    Like

    • dp4peace says:

      Hi Tamar, glad you have found this site helpful! Are you part of the DCIS Integrative Support Group? I would pose your question there as well https://www.facebook.com/groups/158944124702954/

      Like

      • Tamar says:

        Thank you so much for your reply! I didn’t know about that group but will make sure to join and ask my question. This kind of communication is so important. Recently found out that a friend who had breast cancer and both breasts removed, had that done due to microcalcifications. I didn’t want to question her or imply that she had perhaps been over treated. She just told me that they had been in spots in many places.

        Like

  7. KRS1 says:

    would love to connect. I am scheduled for a core breast lymph node biopsy next week. I just read biopsy paperwork and it mentioned the titanium clip. I am sensitive to everything and do not want one placed. will the doc ignore my wishes? will she refuse the procedure since I’m non-compliant?

    Like

  8. Robyn Ouchida says:

    Hi Donna! I am writing a story for the Las Vegas Review-Journal about the misconceptions of DCIS and the placement of titanium markers and would love to get in touch with Lisa Nash. Do you have an email for her? Also, can I reference your website as a resource in my story?

    Like

  9. Ceciel Halpern says:

    I came across this post whilst researching whether I should request titanium marker not be implanted. I have been told I have dense right breast and after yearly mammogram screenings with same comments, I moved to Florida where all of a sudden same mammogram reading done by seemingly overzealous hospital sounded alarms that I needed a diagnostics mammogram. So I had that done and then they said they want me to have an ultrasound and still not sure (although nothing has changed in mammograms for 29 years) so they sent me to have biopsy done. I know with 100% certainty I am allergic to nickel, copper, titanium and ultrasound doctor said there is no way the ultrasound guided biopsy can be done without a marker. I said I don’t want to have something in me which in the past caused me to go into anaphylactic shock and he said I have no choice. How can this be??? Why can I not have an ultrasound guided biopsy done without titanium marker? I’m not showing signs of any breast cancer other than doctors (3) saying “well, we don’t know so let’s have a biopsy done every 6 months”! Is this normal to go through this? Not to mention the cost of all these diagnostics which still show nothing other than the same thing as last 20 years.

    Please! Can someone reach out to me cause I’m so frustrated over this. I don’t want to play Dr. Google but at the same time if I don’t want to have something implanted in me which I know has caused severe issues, is it really impossible to have this done without a marker?

    Like

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