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September 3, 2016
I met Sharon December 20, 2014 a referral from Gilda’s Place. Her journey came to an end today September 3, 2016….
Tue, Feb 24, 2015 2:24 pm
Dear Fighting 4 the Tatas Inflammatory Breast Cancer I Want to thank you for being there for me and assisting in a time of need. You and I have known each other for about a year, in a time which, you have been a good advisor, and resource, and when I needed to see an IBC Doctor, you found me one, and got me in front of him, in a life or death situation. Please do not think I take that for granted, because I do not.
Below please read her words.
In June 2014, I moved here to Southern California, with my daughter for what she hoped would be the best care in oncology available, everything under one roof, the doctors all work together. A Team! I have stage IV IBC TN with Lymphedema
Since my diagnosis in May of 2014, I have met twice as many Doctors and medical professionals who either have never heard of, or DO NOT understand IBC than those who do. There seems to be an acceptance that the dry, cold description of IBC found on most medical websites, basically calling it a terminal illness with no hope, when we know more women who have far exceeded that expectation (living much longer and stronger lives than those inaccurate and old studies show is possible) is accurate and it is not! There is a defeatist attitude from the beginning due to lack of education, not fact. It blows my mind that there are still Doctors who have never heard of IBC. It bothers me that Doctors talk to and treat me as though they either don't believe my symptoms or simply don't know what to do about them. Lymphedema seems to be a huge part of the problem there with a tremendous gap in education. We need better awareness and hope for IBC. It can’t be ignored and pushed aside like it’s hopeless for all of us because it’s been proven that it doesn't have to be by the Doctors and Medical professionals who do care and know what they’re doing and by the pro-active, driven to live IBC survivors who fight and struggle to seek and find proper care even when they have to travel the country to do so, which most of us cannot afford. Avoiding eye contact and phone calls, hoping IBC patients will go away is not going to solve the problem. We need care too. We need Doctors who know what they're doing who can save our lives instead of just letting us slip by. We need to figure out how some women with IBC survive and some don't, and I for one believe that the responsibility lies in large part, in lacking awareness of the disease.
After my mastectomy, on December 2nd, I had follow up appointments with my general and surgical oncologists. When raising my concern about the growing mass in my neck, Dr. Lee explained to me that she was responsible for removing my breasts and infected lymph nodes, not my neck. Doctor Bucher would be managing the rest of my care. I saw my Primary Oncologist Dr. Bucher, about a week later, in which I again (about the sixth time) expressed concern about the now growing lumps in my neck and the back of my head, the pain and discomfort in my throat, my ear on the right and chest, which I myself wrote off to be inflammation from the surgery until the growing lumps were very concerning to me. I was told it could be inflammatory, and that's when I contacted Ms. Joshlyn Earls of "Fighting for the Tatas (IBC Awareness group) and she set me up with Dr. Somlo at the City of Hope. Joshlyn also, met me at the City of Hope and went into the room with me as my advocate and spoke with the doctor on my behalf. I picked up my films, pathology and records, after weeks of ignored messages, from CCC staff, no returned phone calls by any Oncologists or nurses and being patronized by social workers and, through my persistence was scheduled to have a PET and a biopsy of the growing lumps in my neck over a month later. Joshlyn, I am sorry I did not listen to you to change doctors and allow Dr. Somlo to treat me.
My next appointment was with the Radiation Oncologist who proceeded to tell me that I had over twenty masses in my neck, drew me a picture of a neck and shoulders where she scribbled her version of tumors and when I asked her if the chemo wasn't working, what should I do, she looked at me and said, "I’m responsible for what’s in your neck, if the chemo is not working, you could be dead in less than a month.” While I understand the doctors don't always agree, I do not know where I stand, and I am afraid that the next level of treatment could put me out of the running for being capable to advocate for myself. The Comprehensive Cancer Center advertises as a cohesive, "Teamwork" mentality, as they work together and as a team on each case. That is not what they do. They bill separately, and often send bills over and over despite repeated calls and showing proof of insurance. I need things to stabilize so I can fight for my life instead of everyone else. I need things to change so I can survive!
I am disappointed, confused, afraid, and don't know where or to whom to turn without being let down. I appreciate the help I have received, from you and your team at Fighting 4 the Tatas. But I’m far from finished with this journey and I’m not done fighting. So, if anyone wants to be clear with me, try to keep their word or help me in any way they can I would so very much appreciate it, and feel free to share this letter...in hopes that one day I will be writing one of strength inspiration and hope instead of utter despair!
I am so glad that I was persistent with the doctors about something being wrong with my body, because inflammatory breast cancer can be difficult to diagnose. I went from having a little red itchy spot on my breast to having my entire breast become very painful, itchy, swollen, and hot. I had a large knot underneath my arm because the breast cancer had spread to my lymph nodes. By the time I had surgery, it had also spread to my chest wall. I could barely lift my arms; carrying my purse was a challenge. I had a hard time doing things like cooking because I kept dropping the bowls and pots. I knew something was wrong and I needed attention quickly. I sometimes spent 10-12 hours at the hospital, having all kinds of test to figure out what was going on with my body. I was misdiagnosed for five months before being properly diagnosed because inflammatory breast cancer rarely shows up on mammograms.
Since my diagnosis, I have undergone 16 cycles of chemotherapy treatment, a double mastectomy, and the removal of 17 of my lymph nodes. I have had 37 cycles of radiation treatment. I have had a full hysterectomy and I have also had two breast reconstruction surgeries. I suffer from lymphedema, a painful condition that causes my arm to swell. This condition is a side-effect of my breast cancer treatment. I had to retire from work because of the different side-effects from the disease and treatment. Did I want to retire, “Heck No.” I have always been a self-sufficient women with huge dreams and aspirations. I felt, when I had to stop working, my life was over. What are we going to do for Bills? What are we going to do for Food? Will my husband be able to support me and the rest of the family? For a long time while undergoing my treatment I suffered from depression from these vary questions.
My family was a great help for me while I was in treatment for this disease. Everyone did something that helped me get through my every day journey. My husband was the most supportive of them all. I don't mean to be selfish, but I actually loved hearing them fight about who would be attending my medical appointments with me. This was not an easy task but there was no way that I was not going to fight. I also wanted to educate other women about the importance of breast health. During my treatment of breast cancer, I advocate frequently. I received a lot of emotional help from an organization called Fighting 4 the Tatas Breast Cancer Organization. Sometimes I would be so down and needed someone that I knew was fighting the same breast cancer, I knew I could always call and speak with Joshlyn, the founder, sometimes we would talk for hours is one of my favorite organizations.
The one thing that I have learned through my battle with breast cancer is that we have to love each other while we can; life is really short. Every morning that we open our eyes, we must focus on helping someone or doing something that will help. My experience has also taught me patience. I find myself doing things like allowing individuals to skip me in grocery stores or even traffic. These simple things make me feel good.
To all women out there that may be facing breast cancer or those worried about getting breast cancer, please know that we are unique and our treatment and risk factors may be different. Education is the key!!!
On August 1st of 2014 I was diagnosed with a recurrence of this devastating disease which means now I am metastatic breast cancer patient.
We need to know our family history, particularly our family's history of cancer. My grandmother and great-grandmother both battled breast cancer. I also have a high rate of other cancers in my family, so I had genetic testing for BRCA1 and BRCA2 not long after my treatment. While I tested negative for these gene mutations, I am considering additional genetic testing that has recently become available for breast cancer.
A Few Lives we have touched
Below are a few of the families we have helped. Families like these are all around us, and often a gift of just $20 can pay a utility bill. Please consider helping a family in their darkest hour.
In September 2004, I wasn't feeling good but I wasn't feeling bad. I went to the Doctor I was told I had a cold, antibiotics prescribed and sent home. The weeks of October I was feeling a bit run down, thinking it was my cold, I was a cheer leading coach always on the move. I kept rubbing my breast with my left arm (elbow) for I was always feeling itchy and then I saw the ingrown hair or zit on my left breast. I scratched and picked at it. Quickly my breast swelled up, back to the doctor I went. I was told I had a ductile infection probably from my cold back on antibiotics...two weeks later my breast was so swollen my nipple was lying flat. I was told my infection was so bad, that I would have to stay on antibiotics for another two weeks.
Now Halloween, I'm at an event for my kids and my cheerleaders when I'm running out of energy this little ingrown hair has traveled over my breast leaving my skin looking like an orange peel heading straight towards my nipple. My breast is hot and itchy, I'm sent out for mammogram and ultrasound both came back clear. My doctor says my infection is so severe I need daily antibiotic injections.
Time seems to be going by and nothing seems to be helping me. My daily injections end after two weeks. I'm now approaching Thanksgiving, All the antibiotics have given me severe yeast infections, my undercarriage is blood raw, I can hardly walk, my energy level has dropped and depression is setting in. My doctor now prescribes, I need to go in the hospital for IV antibiotic treatment if I'm not better quickly. First weekend in December I'm put in the hospital for IV antibiotic therapy. I'm been seen by three (3) infectious disease specialists, the questions begin...
Okay we will see you in the morning...
While sitting in the hospital, I could hear our local Christmas parade going by and all I can think of is my children home sad and me sitting in the hospital alone. Two nights and three days (Sunday) later my infectious disease specialists came in and told me "How good I was looking, so much better from when I came in " WHAT? SERIOUSLY!!!! I had not changed in my appearance, my energy level, NOTHING!!!!!
I was done, I was trying to self-check myself out of the hospital when an anesthesiologist suggested putting in a pick line in my left arm, I asked WHY? Dr. said, just in case you need more therapy, Again I asked Why? The doctor said I can't say why? Just in case...UGH! I got my pick line and went home. I started doing my homework with what little information I had.
I turned to the Internet, I typed large breast, hot breast, swollen breast, I ended up with every "Porn" site there was. Then, I received one e-mail: GET BIOPSY OR DIE...My heart jumped do I dare open it? Would it be some pervert? I held my breath and hit enter...MY LIFE WOULD NEVER BE THE SAME AGAIN. It was a man in New York, I'm in California, you have IBC get a core biopsy not a punch biopsy, OR DIE! Then he proceeded to tell me what I would go through (His wife had just died), Cold or flu - Ductile infection – Antibiotics - Severe Infection/ Injections -Hospital IV treatment
3rd world travel or IV use BS questions - Nothing about swollen Breast - Peau de' orange skin (orange peel texture) - flat or inverted nipple/leakage - Hot itchy red breast - Clear mammogram
and much more as well as sending me the symptoms of IBC. Everything he said was going to happen...happened! OMG. I thought I had a stockier I ran around my home making sure every door and window was closed and locked. Then I went to email him back when I realized he was gone...Just gone. I printed everything brought it to my doctors and they just looked at me. "Do you know how rare this is 1 out of 500,000 and we haven't seen it on the West Coast. I insisted " core biopsy".
As no luck was on my side but, my surgeon just happened to be in his office on other business, he came in took one look at my breast and said what are you doing Friday morning? Meet me at the hospital at 5:30 in outpatient surgery. Me, "ok" and with that I just thought "What just happened?"
December 17, 2004, It was 12 hours after my biopsy I got the call, Friday night about 6:30pm, Denise is anyone there with you?" Me: "Doc just tell me," "Denise, it is IBC you are a stage 3B it's bad...Really bad. Monday, you are to go see Dr. Cynthia Martell she is the Doggie Howser of oncology"
Monday, December 20th, 2004 Dr. Martell said I have Inflammatory Breast Cancer Stage 3B, you have 12-15 months to live (that's with quality of life) I strongly suggest you get your affairs in order. I'm sorry. I said, that’s it...Death sentence, Dr. Martell said, I'm sorry there are NO cases of anyone surviving this disease. I said, I'm prepared to fight for my life...Are you? Dr. Martell said, Yes, I am but you must understand there is NO survival rate.
My treatment was Chemo for 3 months_ Double radical mastectomy. During the summer, I received 3 more months of chemo and radiation, then another 3 months of chemo (Radiation-hit my heart muscle)
Bone loss and thinning of the spine (Severe back pain). 1 year of herceptin-Nupogen` blood builders.
Almost 2 years later reconstructive surgery, 3 months later implants from failed reconstruction surgery.
New implants from old implant that failed; 2 new implants due to old implants leaking. Another surgery, I almost didn't make it. Pneumonia twice almost killed me, a full hysterectomy after tumor found on ovary. Mistakes, revisions 28 or 30 surgeries now 2017, just on chest and tummy. I have had 6 root canals teeth falling out or imploding from chemo & radiation. This is just what I can remember... I have tried to forget so many things & traumas.
To date I walk into City of Hope and they just look at me "You’re a miracle" All the medical research says I should be dead. My first years I tried to raise awareness but I find people don't want to know the truth about IBC or Breast Cancer until they are diagnosed with it. I find they are happy to throw a few bucks in the pot and wear a pink shirt,for the rest of us survivors we try to make it better, the diagnosis & treatment easier.
I love this site - Fighting 4 the TaTas Inflammatory Breast Cancer, they get it and are trying to make a difference...Join us...
Every person is different and every situation is different. Whether you’ve been diagnosed with breast cancer or you are a caregiver, family member or friend to someone who has been diagnosed with Breast Cancer, you can motivate and inspire others by telling us about your story and/or experience. If you want to share your story/experience please click here.
A LONG FIGHT FOR LIFE HAS ENDED!
ANOTHER FIGHTER HAS DIED
Dear Fighting 4 the Tatas Breast Cancer Organization
My name is Candice Miles and today March 22, 2014 I turned 30. A day I did not think I would see! I never paid any attention to people talking about breast cancer, and I just knew I would never get breast cancer but I did at 29 years old. I went to three hospitals in pain and they told me I had an infection and was given a pain pill called Norco. Only when I went to the fourth hospital, Arrowhead Regional Medical Hospital was I told that it was not an infection but it was Breast Cancer. I was in so much pain and did not understand what was happening to me, and I did not want to hear anything from any one. All I wanted was to stop the pain. Then in January, 2014 I met a lady that did not baby me, she just came right out and told me that I was going to die before my 30th birthday I did not listen to her. She carried me from the hospital to lunch and really talked to me like I was her daughter for she could relate to me because she was a breast cancer patient herself and we had the same type Inflammatory Breast Cancer. Ms. Joshlyn stayed with me, she went to every appointment I had her to talked to my doctors for me. Joshlyn, paid for bus rides, lunch, gave me a wig and talked with my mother and my male friend for me because emotionally I could not bear it. During this time my finances were not the best and I needed to pay an electric bill her organization Fighting 4 the Tatas paid it for me. They call me every month to see how I am doing. Thank you Ms. Joshlyn and Fighting 4 the Tatas for everything you have done for me, for if you had not enter into my life when you did, I know I would be dead, you see the doctors told me I only had three months to live. Because of you and Fighting 4 the Tatas I am still alive in 2017.
Julia Petersen, 2017
Subject: Assistance please
From: Julia Petersen <email@example.com>
Date: Thu, March 16, 2017 6:42 am
I am a 36 year old mother of four children under the age of 10 from Jacksonville, FL that woke up on January 25, 2016 with a hard and swollen breast. After having my annual exam two days before, my GYN office thought it was nothing more than a swollen gland. The next day, I called and asked for an appointment to see my GYN, who did an ultrasound and started me on antibiotics for Mastitis. Fast forward through a mammogram (negative for cancer), three ultrasounds (negative for any concerns), and 7 rounds of antibiotics, my breast was beginning to bruise. When my lower back began to hurt so badly I could not move, the breast surgeon, who also thought I had Mastitis, decided finally to do a biopsy on March 10, 2016. Finally, and sadly, I was diagnosed with Inflammatory breast cancer (IBC). I decided to leave Baptist and go to Mayo for treatment where I had a PET scan revealing that the cancer had spread to four places on my bones, one of which was causing the extreme pain. I was diagnosed with Metastatic (Stage 4) breast cancer and given 2.5 years to live. I began with a biopsy of my bone with a drill directly into my pelvis. Then, I had 10 days of radiation to that one area on my bone and began an infusion of Herceptin and Perjeta (I am HER2+). Then , after radiation, the chemo drug Taxotere was included in my triweekly infusions for 8 rounds. After 8 rounds, I now am on only Herceptin and a Perjeta for the rest of my life or until they stop working. I've decided against surgery because I am Stage 4.
My body has been through so much with all the biopsies, the 8 rounds of chemo, and currently, the every three week infusion of Herceptin and Perjeta ($30,000 for both) for the rest of my life or until they stop working. This year has been extremely difficult financially (over $300,000 in bills (I have a 80/20 insurance policy)). Our home is about to be in foreclosure because treatment is more important at this time. My husband and I do not make enough money to pay our bills any longer because of all the time we have to take off. This was very unexpected and I am still in shock. My kids and family are not taking this very well. Everyone is in therapy because they all think I am going to die. Most days I can't get out of bed due to the side effects of the chemo and that saddens them. They miss me. I miss myself. I am angry and sad and scared to die. I have a Master's of Science in Criminology and had a bright future ahead of me. Now I worry about my health and insurance and finances and normalcy for our family. I miss my old self. I miss life. I need help emotionally and financially. This is so tough to write. Can you help? Anything will help.
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