I promise

"I promise, Suzy... Even if it takes the rest of my life." - Nancy G. Brinker, founder of Susan G. Komen for the Cure

What is Triple Negative Breast Cancer?

WHAT IS TRIPLE NEGATIVE BREAST CANCER?

Just in recent years, Triple Negative Breast Cancer has sparked interest in the news where instead of calling the tumor as ER-negative, PR-negative, and HER2-negative; researchers began using the shorthand term, "Triple Negative," dubbed the "new type" type of cancer. Being Triple Negative, you don't have a targeted therapy and that your only treatment option is chemotherapy.

Triple Negative is seen in about 15% of all breast cancers. Triple Negative is a very aggressive cancer that tends to strike younger women, pre-menopause, especially among African-American women and women who have BRCA1 mutations. The tumor tends to be fast growing and is less likely to show up on an annual mammogram. TN is more likely to metastasis early on; has a high rate of recurrence in the first 2-3 years from diagnosis and has a poorer prognosis than other types of breast cancer due to lack of specific, targeted treatment for TNBC.

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PRESENTATION



MY JOURNEY









LUMP DISCOVERY
Sunday, August 2, 2009
My husband had just left that day for Traverse City when that evening I felt a lump on my left breast along the bra band. At first I thought it was just my rib, maybe a little swollen. After comparing it with the right breast, I realized it was different from the left and couldn't believe it was actually a breast lump. I was thinking this just can't be happening and my heart just sunk. I reacted fast and 2 days later I got in for a mammogram.  I didn't want to tell my husband for he was on vacation with our son, I knew if I told him, he would worry and come back home. I decided to wait until after I have the mammogram when I know more of what I'm dealing with.

Tuesday, August 3, 2009
I went to Toledo Hospital for my mammogram, haven't had one since my baseline at age 36. I told them that I found a lump and they put a marker on it in that area and took digital images and told me that this was the newest state of the art technology that is more accurate and shows more detail. After the mammogram, they performed an ultrasound of the lump in my breast, I saw a large mass showed up on the monitor and it looked huge to me. I asked if that was the tumor and she replied, "yes." I asked if the tumor was really that big and she replied that it was a medium size lump measuring 2cm.

The breast care doctor told me the results of my mammogram and said it came back negative. I told him it's there I can feel it. He said there is a lump that showed up on the ultrasound but didn't show up on the mammogram because my tissues were too dense. The doc said it's probably nothing to worry about that it was probably just a cyst but I was very concerned and insisted on a biopsy right then and there. The doc inserted a needle into my breast into the tumor as I watched the needle poking the tumor on the ultrasound screen. After the Doc got the specimen, I asked him what he thought. Doc said, "before the biopsy, I was 50/50 on it, now that I did the biopsy, I say there's about 25% chance it could be cancer but I really think it's just a cyst for as I was doing the biopsy, the lump changed in shape leading me to believe that it's not solid". The Doc further said, " I don't want to say too much, you'll have to wait for the lab results".
So I went home feeling relieved, thinking I just have a cyst in my breast. I called my husband and told him about the lump and the testings I had done. 
 I assured him not to worry that I'll be ok. My husband did come home the next day.


Thursday, August 4, 2009
2 days later in the early afternoon, I received the call from my family doctor, Dr. Beth saying she has my lab results. She said, 'it is positive". I was just shocked with this news. Dr. Beth said, " We're going to move quickly with this, remove the lump, take a look at your lymph nodes and decide where we need to go from there. All I could say is "ok" and I felt numb.  I couldn't talk, couldn't ask questions, I was stunned with disbelief that my worst fear was now reality. First thing I thought, was my son... the possibility of him being without his mommy and how do I tell him that I'm sick? Dr. Beth said she's going to get me in to see a breast care surgeon in the next couple of weeks.  Dr. Beth said, "I'm sorry, I hate telling you like this over the phone but I don't want to delay this, we're going to take care of this." Dr. Beth further said, I couldn't believe this myself, you're young and always been so healthy." I hung up the phone, and couldn't believe what I just heard. I'm 41 and I have breast cancer!

 I now had to go outside and break the bad news to my husband of 17 years. I told him that Dr. Beth had my lab results and detailed him in on her conversation. The look on his face, he was just devastated. My husband broke down crying and grabbed me, held me in his arms and told me, he's sorry. 
I remained calm, I never cried, I wasn't angry but I was really scared, scared of the unknown... Suddenly, nothing else mattered, I have breast cancer! Not going to worry about jobs, money or material things because right now it doesn't matter, I'm going to die!
I couldn't see pass "today"...  "How much time do I have? What stage is my breast cancer? Did it spread? Is it in my lymph nodes? Is it treatable? Will I lose my breast? Will I have chemo and radiation? and OMG, am I'm going to lose my hair?..." Questions that weren't answered for 2 weeks until my consultation visit with my breast surgeon.  2 weeks of worry, still not knowing how bad my breast cancer was. Can you imagine all the fear racing through my head and trying to keep myself together.  I had to stay focused. I knew I had to be strong, and I knew I was in for a long hard fight ahead of me. 

We decided not to tell our son at this time until after we see the surgeon and decide from there on how much to tell him. My mom was shocked and couldn't believe it for she had had lumps removed from her breast twice and they were benign.                               2 long weeks later, I met with my surgeon who told me that I have a rare and aggressive form of cancer that doesn't respond to hormone therapy, chemo was my only option. My cancer was Stage2 and, I was given the option to have a lumpectomy or a mastectomy, a very hard decision for me to make.


 I immediately took a leave of absence from my jobs for I was constantly on the run with several medical appointments and just trying to keep head together. I had a breast MRI that showed the cancer was isolated to the one area. On my birthday, August 20th, I had 6½ hours of testing at the hospital for blood work, bone scan and chest x-rays. 


SURGERY  On the day of surgery at the hospital I had another fun, fun procedure that no one warned me about, Grrr! - Sentinel Lymph Node Biopsy, a NEEDLE injection of blue dye into my areola just below the nipple. OMG, that was the worst pain that I have ever felt, the stinging shot across my chest to my shoulder and down my arm. Thanks for the free piercing but I'd rather have passed!
I did go with the lumpectomy, had 7 lymph nodes from my armpit and chest tissues, no cancer in the nodes! 
I had an incision under breast, in armpit, and side where the draining tube comes out, ICK! I was fairly bruised and swollen on whole left side. 
I had the post-op draining tube in me for 5½ weeks and had developed an infection in my breast and side with severe pain, fever and chills.



CHEMOTHERAPY
I had Chemo treatments (2½ hour sessions) every other week for 16 weeks,with three visits to the hospital for blood work, Chemo, then I go back the following day to get a shot of Neulasta to bring my white blood cell back up. First set of Chemo was an intense cocktail chemotherapy, Adriamycin and Cytoxan known as the "Red Devil" that was very potent but for the most part I did very well - nausea controlled by meds, tingling and numbness in hands, some upset stomach, back pain, lost of appetite and food tasting bland and red blood cell count decreasing. The Chemo had thrown me into early menopause with hot flashes and night sweats.  





I remember telling my husband about a week after my first Chemo treatment of how wicked it was. I felt like I had a bad hangover 24/7. Told him that I can't do this, this is awful and that the cancer is going to come back again so what's the point. I had to find that inner strength in me again to just do it, focus on 1 day at a time
My scalp became sore and tingled as I started losing hair about 3 days after my 2nd chemo treatment, going from shedding to rapidly falling out in clumps just by running my fingers through my hair.  I never wore a wig, just my bandanas and fleece hats to keep my head warm. 

The 2nd set of chemo, Taxol was a little easier on me - no nausea but the tradeoff was that it made me extremely tired, my bones in my legs ached all the time and these chemo sessions were now about 6 hours long!  
I managed to keep my eyebrows and lashes until my last chemo treatment. I've lost most of my muscle tone, fingernails turned yellowish-orange,  I've lost  a few toe nails that turned black and peeled off. I developed this clicking noise in my ears.  My hair came back in white like chick feathers and then turned curly salt and pepper look.







RADIATION
I had 33 radiation treatments, 5 days a week for 6½ weeks. I had to get fitted for a mold of my upper body that I had to lay in with my arms pulled back behind my head during radiation treatments. The techs tattooed 5 dots (Woo Hoo, my first tattoo!) on my chest and breast area and with a permanent marker drew lines connecting the dots to be exact as the machine closed in on my chest and zaps my boob 4 times with radiation.  
Each treatment only took about 10 minutes.
I didn't feel a thing nor did it hurt, just warmth, but I had one tanned boob, actually it was burnt crisp.
I embarrassed a male intern who wanted to examine me and I said, "Doesn't it look like a dried up baked potato?", He just smirked. 



After I completed all my treatments, I had my chemo port removed surgically from my chest. 



STRENGTH
Nearing the end of my treatments I felt lost, life after cancer treatments was a lot harder than when I was going through it. People seem to think that when you're done with treatments and is cancer free that it's done and over, put it behind you, things can go back to normal... Only if it was that easy. I've struggled some... the life I once had, there's no going back to... so many changes that I had to learn to cope with.  I lost both of my jobs. I had 2 years of extreme fatigue and feeling constant scatter-brained.


 Is there such thing as chemo brain? Absolutely!...  I have become very forgetful and it does annoy me at times and can be frustrating ... For instance, the spelling of the word s-a-d wouldn't register in my mind.


The stress with all of my follow-up appointments adding to my medical bills debt  was also very taxing.  I turned to a local cancer wellness center for support, trying to figure out my new "normal" and live again.
I immediately got involved in their Breast Cancer Support Group where I was surrounded by people who didn't mind talking about cancer and who "get it" The support group has helped me rejuvenate my self-image and ease the transition that I've been going through. All the positive energy that flows through the room during group sessions has such an uplifting effect on my mental attitude. my new normal is living for the moment, LIVE LIFE! 








 I am now a 3½ year survivor of Triple Negative Breast Cancer and what scares me the most is it's tendency of recurrence.  

 I have become a much stronger woman with determination to deal with what's thrown at me and have compassion and a strong connection with those who are still battling this dreaded disease. I pray that soon there will be a breakthrough in our much needed targeted therapy for triple negative breast cancer and a Cure to rid the world of breast cancer.

To raise awareness and funding for cancer, I've participated in walks for Making Strides against Breast Cancer, Relay for Life,  Susan G. Komen Race for the Cure and most recently, Triple Negative Breast Cancer Inaugural Awareness Day where I raised $605 for the Triple Negative Breast Cancer Foundation to help find our targeted therapy.

I have created a blog documenting my journey with photos too to keep my family and friends informed of my prognosis. My blog was therapeutic for me as a way of expressing my feelings and thoughts.  After treatments were over, I wanted to turn my blog into a more of an informational and inspirational site for TNBC;  posting latest research articles, events I've participated in, stories and memorials on my TNBC pink sisters, and other postings of same interests.
With my blog site, I have reached out to people all over the world reaching many countries in every continent with over 80,000 views to my site. My hope is that my site will help others to have hope, give them the strength to fight and to provide resources to get them the information they need to know about this TNBC subtype.
http://mlsspaskvan.blogspot.com






TRIPLE NEGATIVE BREAST CANCER, THE UGLY TRUTH


Many women who are diagnosed with Triple Negative Breast Cancer are often left in the dark about what triple-negative means for them at time of diagnosis. Often, these women turn to the Internet searching for answers as I did too... the facts are scary. 
Just a few years ago, no one even heard of TNBC, a type of breast cancer that researchers knew a little about. Triple-Negative is one of the most aggressive tumors ever seen by doctors. The first reference of "Triple Negative" Breast Cancer in medical literature was in October 2005. Focused studies for TNBC had only been conducted in the last few years. Triple Negative Breast Cancer had recently become a hot area of research for targeted therapy and the latest in clinical trials in the study of breast cancer.

Triple Negative tumors lacks expression of estrogen receptor (ER) and progesterone receptor (PR), along with the absence of human epidermal growth factor receptor-2 over-expression (HER2) portraying a critical clinical challenge because this type of cancer doesn't respond to hormone therapy or other available targeted agents; Standard Chemotherapy remains the only treatment available and only effective in about 40% of patients; and in those that do relapse, the cancer becomes highly resistant and quickly results in death. The average time from recurrence to death is about 9 months.

DR. O’SHAUGHNESSY: Metastatic cancer that is triple-negative is difficult to treat because our therapies are generally short-lived in their benefit, if they benefit patients at all. There is a subset of triple-negative metastatic patients who really don’t have responsive disease to any of our standard therapies.


Triple Negative Breast Cancer accounts for about 15% of all breast cancers and is responsible for about 25% of all breast cancer deaths. Triple-Negative is characterized as a rapid growing breast cancer with a relatively poorer outcome; usually diagnosed at a late stage, shorter survival rate, more likely to metastasize and has a high risk of early recurrence between 2-3 years after diagnosis.
Triple Negative Breast Cancer tends to strike younger women.  Premenopausal women in their 20's or 30's are more susceptible to Triple Negative Breast Cancer and, African-American women are at highest risk. TNBC is  the #1 cause in breast cancer deaths in African-American women . 
Women that carry the BRCA1 gene mutation which is associated with hereditary breast cancer are also at risk  for 90% of BRCA-1 carriers are also Triple Negative, therefore genetic testing should be done since both of which also have aggressive clinical courses. Inherited BRCA -1 gene mutation carriers has an upward 80% life time risk of developing breast cancer and about 50% risk of developing ovarian cancer. but 20% of TNBC has BRCA mutations.

Tho, we do not know what fuels Triple Negative Breast Cancer, I have been told that changing my life style; low-fat diet, regular exercise, less stress and being physically fit significantly reduces my chance of TNBC recurrence.

News correspondent, Jennifer Griffin and news anchor, Robin Roberts are TNBC survivors.





RESEARCH
 It is discouraging some knowing that there has been very little advancement in research since my diagnosis in 2009, and that Triple Negative Breast Cancer still remains a medical unmet need for an effective treatment.


* In 2009, Susan G. Komen for the Cure and Triple Negative Foundation teamed up to fund a $7.5million Promise Grant over 5 years to researchers looking at an antibody in hope of developing a targeted long-term therapy for triple negative tumors. 

Researchers have learned just in the past several months that TNBC is an extremely complex disease.
TNBC is not just one disease but 6 different subtypes of it in itself. Also, each tumor displays multiple "clonal genotypes" with each cancer at a different stage in the evolutionary process at the time of diagnosis which explains why TNBC patients responds so differently to, or is resistance to treatment. Each TNBC tumor is  genomically unique. Therefore, Clincal trials will need to be designed as "personalized" treatments for individual patients.
Research will study patient responses to treatment at the genetic level and look at ways to improve therapies and outcomes for patients."

The clinical drug, PARP inhibitors prevents cancer cells from repairing it's own DNA
  • Developing inhibitors that target a protein, RSK2 which eliminates TNBC cells completely.
  • study to determine if an experimental drug, Entinostat, can reprogram tumor cells to express a protein called an estrogen receptor to make them sensitive to hormone therapy.
  • A research study showed that natural fruit, blueberries gave preliminary promising results of controlling tumor growth, reduction of metastasis, and causing cell death in triple-negative breast cancer cells, at more than double the rate observed in untreated cells.


TAKE CARE OF YOUR BODY

* Research showed low saturated fat diet and 4-5 hours of exercise a week can lower the chance of a recurrence by 60 percent. 

1) DIET
diet with rich in vegetables and low in fat foods. 
  •  Increase your intake of colorful vegetables and fruit for many contain antioxidants that keep your immune system healthy and protect against cancer. The brighter the food, the richer the color, the higher its anti-oxidant count. Fresh and frozen is best for nutrition intake.
  • Great antioxidants and anti-inflammatories: Salmon (wild caught), broccoli, cabbage, quinoa, oatmeal and dates. Broccoli kills cancer cells.
    • Eat whole grains 
    • Green tea- may reduce your cancer risk
    •  Studies associate low Vitamin D at diagnosis with a higher risk for recurrence. Vitamin D and other nutrients from oily fish, milk, fortified cereals and cheese.  20 minutes of sunlight (vitamin D3) a day helps boosts Vitamin D 
    • Avoid sugar. Eliminate junk food and soda drinks
      • Studies show diets high in sugar cause spikes in insulin and stimulate tumors to grow and can contribute to breast cancer, especially triple negative breast cancer.
      •  Avoid processed or package foods
      •  Avoid fried foods



    2) MAINTAIN A HEALTHY BODY WEIGHT 
    • Obese patients with breast cancer have more frequent recurrence and worse prognosis as compared to lean patients
    3) PHYSICAL ACTIVITY- Aim for moderate exercise
    • Walking, running, aerobics, bicycling and swimming
    •  20-25 minutes daily or 30 minutes 5 days a week 

    4) Decrease alcohol intake
    • 1 drink per day increase risk of breast cancer by 7%
    •  Studies show that more than 2 drinks a week can raise the risk of recurrence significantly.


    *Ladies, Triple Negative Breast Cancer is a very serious disease and is striking much younger women in their 20's, 30's and 40's. Please keep up with your monthly self exams for early detection is key for survival. Monthly breast self exams are so important especially among younger women since most triple-negative tumors are not detected by mammograms due to the breast tissue density in women. Also, triple-negative tumors may be growing rapidly between image screenings. 
    Know your body, know how your breasts normally look and feel. Pay attention to any changes in your breast and let your doctor know right away. Many women that have asked me about my cancer, I have told them that if you suspect a lump, don't delay, you need to see your doctor and get a mammogram; early detection is the key to having a better outcome with a triple-negative diagnosis.
    Again, if you suspect a lump, don't wait... time is critical for Triple Negative Breast Cancer is a very fast moving cancer.  




    * Be your own advocate for your body, You're not too young to have breast cancer. There is financial help for uninsured for mammograms. Komen Foundation does give a referral for free mammograms





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