Preventative Care For Inflammatory Breast Cancer And Other Breast Cancers
- Information is Key! The information out there is outdated.
>> A Typical Breast exam, a Mammogram or Ultrasound WILL NOT catch all types of breast cancer, particularly for women in their 20s and 30s.
>> Every women who sees her primary care doctor should be given a pamphlet explaining the several different types of breast cancer and how to detect them.
>> IBC hits primarily younger women 20s and 30s. There is no way to genetically test for IBC.
- Blood Tests called CA27-29 or CA15-3. For women with a family history of breast cancer, it should be done 2-3 times a year. Everyone has between 0-39 cancer cells on the CA27-29 but Heidi and I had over a thousand and two thousand. A CA27-29 blood test is an excellent not invasive tool to use in conjunction with a mammogram and ultrasound for all women, but especially younger women with a history of breast cancer in the family.
- "Breast M.R.I." It is a diagnostic test that uses magnetic fields and radio (sound) waves to create computerized images of the breast, bones, and soft tissue such as organs, muscle, cartilage, ligaments, and tendons.
- Biopsies. For women with a family history of breast cancer, any suspicious fibro adenomas that continue to occur and are painful should be biopsied.
- Trust yourself. They are your breasts. If you think something is wrong, insist that the doctor do something. Do not be talked out of your requests or dismissed as a hysterical female. They are only doctors not Gods.
- Symptoms of IBC some symptoms that precede the typical "red swollen breast," which is usually stage 3 at that point of discovery. 1. Unusual fatigue, painful breasts, body aching.
- Get a doctor who will fight for you and not hand you a hospice pamphlet upon diagnosis and tell you they only have palliative care to offer you. If a doctor is put off by your desire to fight for your life….This is a red flag so GET ANOTHER DOCTOR! Never let a doctor talk you into death before they have even made an attempt to save your life.
- Get into contact with a woman who has been through the same thing and succeeded.
- Have faith! Where there's a will, there's a way...a mother can lift a car to save her infant...women are not just beautiful and wild...they are STRONG, they really can endure and triumph
- FIGHT...Fight for the life you want to have, the love you want, the children you have or want to have.
HEIDI MARBLE'S STORY (in her own words):
Author of Waiting for Wings: A Woman's Metamorphosis Through Cancer, Biography
Seven years ago at the age of 34, Heidi heard the words "you have cancer." She was given a 1 in 1,000 chance of survival. It seemed her life would be cut short by the virulent, rare cancer raging inside of her. Incredibly, she survived for her son, for her husband and for herself. She has crawled back from the dead with a heart full of purpose and a mission to spread hope.
What she thought would be a written and photographic legacy for her son transformed into a book. The title Waiting for Wings exemplifies the metamorphosis Heidi had to endure. Like a caterpillar, she was bald, confined and struggling to set herself free. Early on, she declared her determination to live by having a friend write the words "I Will Survive' on her back during a photo shoot. This primal determination is spilled into the pages of her book. It is more than a story about surviving cancer; it is a love story between and man and woman, a story of the human spirit and a call to rise up from adversity.
To date, Heidi has had the opportunity to speak in front of thousands of people blending her sense of humor with her message of beating the odds. She has been featured on CBS's Bay Area Sunday, ABC's Sacramento and Co. and NBC's KCRA 3 News. Her story filled the front pages of the Daily Republic and Reporter Newspapers. She was also been featured in Solano Magazine which has a circulation of over 100,000. In addition, she has been featured as an inspirational speaker in over 30 events throughout the Bay area. Heidi also sits on the board of North Bay Medical Center as a patient advocate. Her art work and book have raised thousands of dollars to help people dealing with all types of cancer. Furthermore, phase one of a feature length documentary has been started under the care of famous Hollywood Literary Agent Caren Bohrman.
As Heidi writes, cancer is a thief; it took her breasts, her hair, her fertility but it did not take her spirit. She proudly honors her barren chest by having a full length photo on the front cover of her book. By owning her scars she hopes to help broaden the spectrum of beauty. In her words, "Being alive is beautiful."
Waiting for Wings is a unique blend of narrative, poetry and photographs. After reading this book you will be inspired to see your own struggles as a way to find your wings. As Heidi says "Don't leave this life with your potential still inside, unfold your wings and fly".
When you receive a devastating diagnosis it is like falling mid-flight. Life as you know it has changed forever and you need to put together a battle-plan.
- You need to get a second opinion and learn about your disease using caution. Information must be edited and from good sources. Often your Dr. can direct you to the proper websites/books.
- Insist on meeting your Dr.'s before you dress into a gown and sit on the "deli" paper! You instantly feel more empowered in your own clothes. Take an organizer with a calendar so you can got down questions while you are waiting, record symptoms and schedule medical appointments. Always take yourself for a treat after an appointment or test. Dairy Queen or Starbucks work for me!
- Create a space for healing. I stocked my bedroom with; "nightstand" snacks, wonderful candles, journals, pictures, beautiful music and plenty of inspiring books. You may even want a TV to watch funny movies while you are recovering. It's also not a bad idea to have a small microwave to heat up water for tea or for heating up therapeutic packs. Sometimes the thought of having to walk to the kitchen makes you want to cry!
- Give your body nourishment. It may be difficult to eat and I find smoothies incredibly nutritious and easy to digest. You can pack a lot of nutritional punch and these frozen goodies are easy on the palate. You can also add supplements to boost your immune system (check with your Dr. first)
- Surround yourself with people who will meet you where you are. If you are having a bad day they will listen. If you want to cry they will wipe your tears. Avoid those who tell you "you shouldn't feel a,b or c". Expressing your emotions honestly is extremely important for the healing process. Writing can also be a profound way to share your thoughts without judgement.
- Find people with the same diagnosis who have come through or have learned coping skills. They are an invaluable resource of encouragement and helpful tips. Social workers are a great resource for connection.
- Don't make the mistake of struggling to "go back" to who you used to be. Strive to find who you are supposed to become. Allow the pain and suffering to deepen your compassion so you can share yourself with others once you are strong.
I was born and raised in San Francisco and attended San Francisco public schools. Basically, your typical home grown 'City' girl who became a local district attorney. For more than 6 years I was an Assistant District Attorney with the San Francisco District Attorneys Office. I then accepted my current position as a Sonoma County Deputy District Attorney in the Special Victims Unit. I am a lifelong college gymnast and coach, Adjunct law professor, Police Academy and District Attorney Instructor in areas of domestic violence, sex crimes and how to try a cases without a victim. I was raised by a single mother, a lifelong secretary for the Unified school district who died of metastasized breast cancer in mid 2004 after suffering for 6.5 years. I was determined not to have the same thing happen to me so I sought out a breast care surgeon at Kaiser at 29 and saw her twice a year for ultrasounds.
Diagnosis Two years after my Mom died I was diagnosed with Stage 4 Inflammatory Breast Cancer at age 36 in 2007 despite diligently going to a Kaiser San Francisco Breast Care Surgeon since the age of 29 for biannual ultrasounds and breast exams. In early April 2007, my left breast inflamed overnight and I went straight into Kaiser. While on lunch break from work, I was diagnosed with late stage 4 IBC and handed a Hospice pamphlet and told they would try and "prolong my life" and all they could offer me was palliative care." When I asked them if they were planning on fighting for me they said "That is a vague word, what do you mean by that."
My Decision To "Prosecute the Cancer And Put It Away For Life"
In shock, I made a decision to fight. I have always been fierce and determined. I have never run from danger, rather toward it… I wanted to fight for the life I want to have, for Love, for my love child that I want to have, and to be able to continue serving the people of the Bay Area as a DA.
Just then I was told about a woman who had IBC 10 years earlier that was on your show so I contacted View From The Bay and someone gave me Heidi Marble's email. I emailed her from work and she called me 5 minutes later. She was A Warrior Angel put specifically in my path....We are very similar ladies, we love life and the word "impossible" is not in our vocabulary. She too had been diagnosed in her 30s, was told she would die, and her complaints to doctors in the months preceding her diagnosis were dismissed. Heidi guided me through the trenches; constantly reminding me not to back down and that I had to move swiftly to fight this forest fire type cancer.
Kaiser would not pay for any outside treatment or offer me anything other than "palliative care." In shock again, I turned to my colleagues… who are by nature fighters, the Sonoma County District Attorneys (DAs) and San Francisco DAs, law enforcement, and Defense attorneys. They immediately raised over 30,000 in a few hours to send me to MD Anderson Cancer Center to meet with the only expert in Inflammatory Breast Cancer, Dr. Massimo Cristofanilli.
I am especially blessed that I work in a field with such amazing warriors who share my passion for slogging around in the gutter fighting the good fight....They took turns taking me to chemo staying overnight, made sure I got to work because I wanted to work through chemo. I wanted to fight and they ALL jumped into the ring with me. They didn't throw me away or give up on me. They fought for and with me, because that is their nature. It is what they do everyday in court.
Treatment at MD Anderson Cancer Center
I met Dr. Massimo Cristofanilli in July 2007, an expert in Inflammatory Breast Cancer. I asked him if he would fight for me and his response was "Of course, I will fight for you." He met with his colleagues and did some tests and came back to me with a game plan. Dr. C knew that IBC spreads rapidly so he understood my desire to move swiftly and agreed. Dr. C was skillful, particularly compassionate and as passionate about his work as I am about mine.
He wanted me to return and do a specific type of chemo for 12 weeks and then return and if the cancer hadn't spread to do mastectomy which research showed was a medically indicated method to treat late stage IBC. Kaiser again denied this option and would not pay for a mastectomy.
When I finished my chemo, I returned to MD Anderson Cancer Center where I stayed for more than 5 months. During my stay there, the doctors, the nurses, and staff were exceptional in their respect and treatment of me.
They performed a mastectomy of my left breast in October 2007. They discovered that I was a candidate for a clinical trial, specifically a stem cell rescue/transplant using my own stem cells. Essentially a stem cell transplant is a process by which millions of baby stem cells a collected from your blood over the course of 4 days. These stem cells are cleaned and radiated of any cancer. Then you go into the hospital for 4 days of three types of high dose chemotherapy to kill any remaining cancer cells in your body. Two days later, once your immune system is brought to ground zero, the cleaned-up stem cells (in my case 6 million) are injected back into your body (totally painless and it takes 10 minutes). There is a 7-10 day period to see if your body rejects the transplant. Then over the course of a few months the theory is that the 6 million stem cells will overwhelm any remaining cancer cells and create a new healthy bone marrow environment. The stem cell transplant was remarkably easier than the 6 months of chemotherapy. Other women on the transplant agreed. Because there are only 2-3 studies on this process and they are over 10 years old, again there is a great deal of outdated and misinformation about the effectiveness of this treatment.
Total Treatment I Received
Donation Campaign To Raise Money While Fighting For My Life In A Cancer Treatment Center In Texas
Away from home, alone in another state, with time being of the essence, my health insurance again denied to paying for not just the mastectomy but the clinical trial/ stem cell transplant; even the chemotherapy portion of the transplant. I was fighting for my life and running a donation campaign. I was stunned and perplexed: My insurance wouldn't help me but they also didn't want me going to another doctor.
The cost of the stem cell rescue/transplant cost was 250K. I only had half the cash and my health insurance would not pay anything except for "palliative" care which actually cost more than the transplant. Until I came up with all of the money, the transplant would be delayed. But time was running out and IBC wasn't going to stop for me to raise the money.
I again turned again to my fellow colleagues, District Attorneys, Law Enforcement and Defense attorneys, the Greek Community, The National Greek Archdiocese and my former boss Kamala Harris sent letters overnight asking that the transplant not be delayed any longer and vouching to raise the money to pay for the transplant while I was in the hospital. MD Anderson miraculously agreed!....I needed help and contacted a reporter from the SF Chronicle who had been following me and was concerned about the delays and denials by Kaiser. She immediately wrote an article about me and the insurance denials and delay of my transplant. And hundreds of total strangers from San Francisco and the Bay Area who read about me started sending money. People whom I had never met opened their hearts and their wallets. A 12 year old who heard about me went to church and dumped out his entire savings for me. A woman whom I had never met flew to Texas to take care of me. And within 4 weeks people raised over $100,000. I was moved beyond words....I still get very choked up at how much love was bestowed upon me.
What Kept Me Going?
Strong will to live and faith in God and when the chips are down and you're backed in a corner, there is no one better to have your back than a bunch of prosecutors, cops, and defense attorneys. They have an acute understanding of the word fight because they slog around in the gutter every day in their line of work...They have tough skin...so where many friends dropped by the waste side, they rallied even harder. Of course, their support was only rivaled by the entire Bay Area Greek community and National Greek archdiocese. Then total strangers in the Bay Area who read about me opened their hearts and wallets.
History Of Breast Care Prior to Diagnosis
It is important to note that I was not your typical patient. I was incredibly proactive, but it was not enough! In the few months before my diagnosis, I went to Kaiser several times and told them something was wrong and that I thought I might have cancer. 5 months before my diagnosis I had a mammogram and ultrasound and according to my breast care surgeon, there was no cancer. At that time, I again asked for a biopsy of the 5 suspicious fibro adenomas in my left breast and again my breast care surgeon told me it was not necessary. I had numerous discussions with my breast care surgeon about my mother and my fear of the same thing happening to me. During the 7 years I was seeing this particular breast care surgeon I repeatedly asked what other kinds of breast cancers were out there and if breast exams were sufficient. The surgeon never told me about Inflammatory Breast Cancer and that it does not grow in "lump" form and cannot be detected by breast exam or ultrasound. I was informed at each visit that if my breasts hurt it is not cancer. (One of the tell tale signs of IBC is painful breasts.) My surgeon advised me against genetic testing and the prophylactic mastectomy, continually refused to biopsy any of the fibro adenomas in my left breast, and never told me about simple Blood (CA27-29) which tests for cancer cells in your blood. Upon diagnosis I had over 2,100 cancer cells and average person is supposed to only have 0-39. This special blood test could easily have been part of my bi-annual ultrasounds. Of course, if I had known about this type of non-invasive test, I would have had the surgeon order it as part of my bi-annual ultrasounds (which I have learned from several doctors are actually a poor diagnostic tool for breast cancer in young women). Moreover the radiology technicians that perform the ultrasounds are only trained to spot the traditional form of breast cancer, not IBC or lobular or ductal etc..
One of the major concerns I have for women is for them to know that I did way more that what the average woman is advised to do by the federal and state guidelines...I went in frequently, I sought out a breast care surgeon, I asked for information about different breast cancers, I did not receive pertinent information, simple blood tests that test for cancer, M.R.I.s, Biopsies; I was discouraged from genetic testing, I was told a prophylactic mastectomy was unnecessary and that ultrasounds and breast exams were enough! This simply is not enough. )
My Health Care Nightmare - No one should have to go through
Each and every step of the way, Kaiser blocked my way to try and save my life. It was a terrible nightmare to deal with them. They were evasive in answering questions, told me not to go to MD Anderson Cancer Center, gave me misinformation, refused to do a mastectomy, never did a Pet-Scan, any M.R.I.s, and refused to discuss anything other than palliative care with me (which is "end of life care"), despite the fact that I was responding to treatment and working full time as a deputy district attorney. What angered me was they didn't even try to save my life AND they didn't want any other health organization to try and help me. Their only focus was to convince me to accept death and go 'gentle into the night.' Sadly, I know that many patients have had to face similar treatment and the fact is that No one should find themselves in the same situation I found myself in; fighting for their life and fighting their insurance company's denials of treatment.
I can only analogize the approach Kaiser took to charging a criminal case in my profession. When I have a difficult case, I do not immediately say "I am not going to charge it." First, I talk to the victim and get all of the facts, then I consult with my colleagues, including district attorneys from other states who have special experience in this type of case and THEN I return to my victim and make a decision....It is simply appalling the way I and many others patients are treated.
How I Am Today - NO TRACE OF CANCER IN MY BONE MARROW
I am back at work full time as a district attorney. I am teaching again at the police academies and other district attorneys in California in my specialty field of domestic violence and sex crimes, and I am doing gymnastics and running. Oh yeh, and I don't have any cancer or even "atypical cells" in my bone marrow in spite of my health insurance company who threw me away and told me I would be dead by now.
I would never have chosen this experience, I look at it as "I had something and now it's gone" I tend to shy away from the word "survivor" and find a passage in a book that resonates with me....It tends to put focus on defining oneself from the bad and difficult times and that is not who I am…passionate, focused, wild, determined,
I am eternally grateful that the people of the SF Bay area fought for me so I can continue to serve and fight for victims with honor and great pride as a prosecutor and I know that I am here by the amazing grace of God and all of you. I am here because of miracle upon miracle upon miracle.
I am so happy to be able to prosecute cases again, to be able to do cartwheels and gymnastics again, to run, to teach and train other DAs and police officers in special evidentiary issues surrounding domestic violence and sex crime cases...This is where I flourish in the trenches with the best people I know...who I know have my back in any combat I may encounter.