Introduction

My Cancer Story -- Continues

My original diagnosis of ER/PR positive, Her2 Negative Stage2b - BRCA1+ with 5 positive nodes was in 2014. I had Chemotherapy, 4 AC and 4 Taxol, Bilateral Mastectomy, Oophorectomy, Hysterectomy, Expanders and full reconstruction - along with 35 radiation treatments. I was then declared "Cancer Free" in March 2015.

I was on Letrozole, daily, which I was told I would remain on it for 5 to 10 years.

However, on Groundhog Day 2017, I was re-diagnosed with Stage IV Triple Negative (TNBC) Metastatic Breast Cancer with a breast cancer tumor in my liver. As my first line of treatment, I joined a Clinical Trial - TOPACIO sponsored by Tesaro, which is a combined treatment of Immunotherapy and a Parp Inhibitor. The drugs are Niraparib (Parp) and Pemprolizumab (Immunotherapy). I have been on this trial since March 2017. ... Read More

Friday, October 26, 2018

How does Breast Cancer Staging Work?



Do you know what each staging of Breast Cancer means? How is it determined?

How does Breast Cancer Staging Work?

he stage of a breast cancer is determined by the cancer’s characteristics, such as how large it is and whether or not it has hormone receptors. The stage of the cancer helps you and your doctor:
  • figure out your prognosis, the likely outcome of the disease
  • decide on the best treatment options for you
  • determine if certain clinical trials may be a good option for you
Breast cancer stage is usually expressed as a number on a scale of 0 through IV — with stage 0 describing non-invasive cancers that remain within their original location and stage IV describing invasive cancers that have spread outside the breast to other parts of the body.

How a breast cancer’s stage is determined

Your pathology report will include information that is used to calculate the stage of the breast cancer — that is, whether it is limited to one area in the breast, or it has spread to healthy tissues inside the breast or to other parts of the body. Your doctor will begin to determine this during surgery to remove the cancer and look at one or more of the underarm lymph nodes, which is where breast cancer tends to travel first. He or she also may order additional blood tests or imaging tests if there is reason to believe the cancer might have spread beyond the breast.
The breast cancer staging system, called the TNM system, is overseen by the American Joint Committee on Cancer (AJCC). The AJCC is a group of cancer experts who oversee how cancer is classified and communicated. This is to ensure that all doctors and treatment facilities are describing cancer in a uniform way so that the treatment results of all people can be compared and understood.
In the past, stage number was calculated based on just three clinical characteristics, T, N, and M:
  • the size of the cancer tumor and whether or not it has grown into nearby tissue (T)
  • whether cancer is in the lymph nodes (N)
  • whether the cancer has spread to other parts of the body beyond the breast (M)
Numbers or letters after T, N, and M give more details about each characteristic. Higher numbers mean the cancer is more advanced. Jump to more detailed information about the TNM system.
In 2018, the AJCC updated the breast cancer staging guidelines to add other cancer characteristics to the T, N, M system to determine a cancer’s stage:
Adding information about tumor grade, hormone-receptor status, HER2 status, and possibly Oncotype DX test results has made determining the stage of a breast cancer more complex, but also more accurate.
“The updated guidelines mean that staging is now catching up to how people are actually treated,” explained Elizabeth Mittendorf, M.D., Ph.D., Rob and Karen Hale Distinguished Chair in Surgical Oncology and director of the Breast Immuno-Oncology Program at the Dana-Farber Cancer Institute, who served on the expert panel that wrote the updated guidelines. “When developing a treatment plan, doctors always consider tumor grade, hormone-receptor status, HER2 status, and the Oncotype DX score, if applicable. So, a woman diagnosed with stage II disease that is triple-negative [estrogen-receptor-negative, progesterone-receptor-negative, and HER2-negative] will have a very different treatment plan than a woman diagnosed with stage II disease that is estrogen-receptor-positive. The staging guidelines now take into account what doctors have been doing all along.”
In general, according to experts, the new staging system classifies triple-negative breast cancer (estrogen-receptor-negative, progesterone-receptor-negative, and HER2-negative) at a higher stage and classifies most hormone-receptor-positive breast cancer at a lower stage.
You also may see or hear certain words used to describe the stage of the breast cancer:
  • Local: The cancer is confined within the breast.
  • Regional: The lymph nodes, primarily those in the armpit, are involved.
  • Distant: The cancer is found in other parts of the body as well.
Sometimes doctors use the term “locally advanced” or “regionally advanced” to refer to large tumors that involve the breast skin, underlying chest structures, changes to the breast's shape, and lymph node enlargement that is visible or that your doctor can feel during an exam.
Jump to a specific breast cancer stage to learn more:
The updated AJCC breast cancer staging guidelines have made determining the stage of a cancer a more complicated but accurate process. So, the characteristics of each stage below are somewhat generalized. To see all the possible characteristics of each stage, you can review the AJCC Breast Cancer Staging Guidelines (PDF) online.

Stage 0

Stage 0 is used to describe non-invasive breast cancers, such as DCIS (ductal carcinoma in situ). In stage 0, there is no evidence of cancer cells or non-cancerous abnormal cells breaking out of the part of the breast in which they started, or getting through to or invading neighboring normal tissue.
Learn about what treatments you can generally expect for stage 0 in the Options by Cancer Stage: Stage 0 page in Planning Your Treatment.

Stage I

Stage I describes invasive breast cancer (cancer cells are breaking through to or invading normal surrounding breast tissue) Stage I is divided into subcategories known as IA and IB.
In general, stage IA describes invasive breast cancer in which:
  • the tumor measures up to 2 centimeters (cm) and
  • the cancer has not spread outside the breast; no lymph nodes are involved
In general, stage IB describes invasive breast cancer in which:
  • there is no tumor in the breast; instead, small groups of cancer cells — larger than 0.2 millimeter (mm) but not larger than 2 mm — are found in the lymph nodes or
  • there is a tumor in the breast that is no larger than 2 cm, and there are small groups of cancer cells — larger than 0.2 mm but not larger than 2 mm — in the lymph nodes
Still, if the cancer is estrogen-receptor-positive or progesterone-receptor-positive, it is likely to be classified as stage IA.
Microscopic invasion is possible in stage I breast cancer. In microscopic invasion, the cancer cells have just started to invade the tissue outside the lining of the duct or lobule, but the invading cancer cells can't measure more than 1 mm.
Learn about what treatments you can generally expect for stage IA and IB in the Options by Cancer Stage: Stage IA and IB page in Planning Your Treatment.

Stage II

Stage II is divided into subcategories known as IIA and IIB.
In general, stage IIA describes invasive breast cancer in which:
  • no tumor can be found in the breast, but cancer (larger than 2 millimeters [mm]) is found in 1 to 3 axillary lymph nodes (the lymph nodes under the arm) or in the lymph nodes near the breast bone (found during a sentinel node biopsy) or
  • the tumor measures 2 centimeters (cm) or smaller and has spread to the axillary lymph nodes or
  • the tumor is larger than 2 cm but not larger than 5 cm and has not spread to the axillary lymph nodes
Still, if the cancer tumor measures between 2 and 5 cm and:
  • has not spread to the lymph nodes or parts of the body away from the breast
  • is HER2-negative
  • is hormone-receptor-positive
it will likely be classified as stage IB.
Similarly, if the cancer tumor measures between 2 and 5 cm and:
  • has not spread to the lymph nodes
  • is HER2-negative
  • is estrogen-receptor-positive
  • is progesterone-receptor-negative
  • has an Oncotype DX Recurrence Score of 9
it will likely be classified as stage IA.
In general, stage IIB describes invasive breast cancer in which:
  • the tumor is larger than 2 cm but no larger than 5 centimeters; small groups of breast cancer cells — larger than 0.2 mm but not larger than 2 mm — are found in the lymph nodes or
  • the tumor is larger than 2 cm but no larger than 5 cm; cancer has spread to 1 to 3 axillary lymph nodes or to lymph nodes near the breastbone (found during a sentinel node biopsy) or
  • the tumor is larger than 5 cm but has not spread to the axillary lymph nodes
Still, if the cancer tumor measures between 2 and 5 cm and:
  • cancer is found in 1 to 3 axillary lymph nodes
  • is HER2-positive
  • estrogen-receptor-positive
  • progesterone-receptor-positive
it will likely be classified as stage IB.
Learn about what treatments you can generally expect for stage IIA and IIB in the Options by Cancer Stage: Stage IIA and IIB page in Planning Your Treatment.

Stage III

Stage III is divided into subcategories known as IIIA, IIIB, and IIIC.
In general, stage IIIA describes invasive breast cancer in which either:
  • no tumor is found in the breast or the tumor may be any size; cancer is found in 4 to 9 axillary lymph nodes or in the lymph nodes near the breastbone (found during imaging tests or a physical exam) or
  • the tumor is larger than 5 centimeters (cm); small groups of breast cancer cells (larger than 0.2 millimeter [mm] but not larger than 2 mm) are found in the lymph nodes or
  • the tumor is larger than 5 cm; cancer has spread to 1 to 3 axillary lymph nodes or to the lymph nodes near the breastbone (found during a sentinel lymph node biopsy)
Still, if the cancer tumor measures more than 5 cm across and:
  • is grade 2
  • cancer is found in 4 to 9 axillary lymph nodes
  • is estrogen-receptor-positive
  • is progesterone-receptor-positive
  • is HER2-positive
it will likely be classified as stage IB.
In general, stage IIIB describes invasive breast cancer in which:
  • the tumor may be any size and has spread to the chest wall and/or skin of the breast and caused swelling or an ulcer and
  • may have spread to up to 9 axillary lymph nodes or
  • may have spread to lymph nodes near the breastbone
Still, if the cancer tumor measures more than 5 cm across and:
  • is grade 3
  • cancer is found in 4 to 9 axillary lymph nodes
  • is estrogen-receptor-positive
  • is progesterone-receptor-positive
  • is HER2-positive
it will likely be classified as stage IIA.
Inflammatory breast cancer is considered at least stage IIIB. Typical features of inflammatory breast cancer include:
  • reddening of a large portion of the breast skin
  • the breast feels warm and may be swollen
  • cancer cells have spread to the lymph nodes and may be found in the skin
In general, stage IIIC describes invasive breast cancer in which:
  • there may be no sign of cancer in the breast or, if there is a tumor, it may be any size and may have spread to the chest wall and/or the skin of the breast and
  • the cancer has spread to 10 or more axillary lymph nodes or
  • the cancer has spread to lymph nodes above or below the collarbone or
  • the cancer has spread to axillary lymph nodes or to lymph nodes near the breastbone
Still, if the cancer tumor measures any size and:
  • is grade 2
  • is estrogen-receptor-positive
  • is progesterone-receptor-positive
  • is HER2-positive or negative
it will likely be classified as stage IIIA.
Learn about what treatments you can generally expect for stage IIIA, IIIB, and IIIC in the Options by Cancer Stage: Stage IIIA, IIIB, and IIIC page in Planning Your Treatment.

Stage IV

Stage IV describes invasive breast cancer that has spread beyond the breast and nearby lymph nodes to other organs of the body, such as the lungs, distant lymph nodes, skin, bones, liver, or brain.
You may hear the words “advanced” and “metastatic” used to describe stage IV breast cancer. Cancer may be stage IV at first diagnosis, called “de novo” by doctors, or it can be a recurrence of a previous breast cancer that has spread to other parts of the body.
Learn about what treatments you can generally expect for stage IV in the Options by Cancer Stage: Stage IV page in Planning Your Treatment.

More information about the TNM staging system

The T (size) category describes the original (primary) tumor:
  • TX means the tumor can't be assessed.
  • T0 means there isn't any evidence of the primary tumor.
  • Tis means the cancer is "in situ" (the tumor has not started growing into healthy breast tissue).
  • T1, T2, T3, T4: These numbers are based on the size of the tumor and the extent to which it has grown into neighboring breast tissue. The higher the T number, the larger the tumor and/or the more it may have grown into the breast tissue.
The N (lymph node involvement) category describes whether or not the cancer has reached nearby lymph nodes:
  • NX means the nearby lymph nodes can't be assessed, for example, if they were previously removed.
  • N0 means nearby lymph nodes do not contain cancer.
  • N1, N2, N3: These numbers are based on the number of lymph nodes involved and how much cancer is found in them. The higher the N number, the greater the extent of the lymph node involvement.
The M (metastasis) category tells whether or not there is evidence that the cancer has traveled to other parts of the body:
  • MX means metastasis can't be assessed.
  • M0 means there is no distant metastasis.
  • M1 means that distant metastasis is present.

Tuesday, October 23, 2018

How Breast Cancer Clinical Trials Work https://breastcancer-news.com/2016/05/23/breast-cancer-clinical-trials-work/

How Breast Cancer Clinical Trials Work

Basic Research, R&D

Before clinical trials can begin, there needs to be evidence that a treatment is effective. Sometimes this evidence comes from academic labs that largely explore science for its own sake, not necessarily for the development of a drug. This is called “basic research.” From ideas generated in basic research or from company-sponsored “research and development” or (R&D), experiments typically proceed to pre-clinical research.

Pre-clinical Research

Pre-clinical testing is necessary before a medication or treatment proceeds to clinical trials. This testing involves experiments with animals, and also with cells in a dish (in vitro testing). While still necessary to advance potential therapies for diseases such as breast cancer, modern-day animal testing is generally governed by three principals: 1) reduce the use of animals to a minimum but utilize animal test subjects to collect data indicating that a treatment is safe and effective in people, 2) minimize animal suffering and assure animal welfare as much as possible, and 3) replace animal experiments with other alternatives when possible.
A great deal of pre-clinical testing focuses on ensuring that a treatment is safe, for example, that the treatment does not cause birth defects (teratology) or other medical problems. Pre-clinical testing can also focus on how a treatment works and whether it is predicted to work effectively.

Clinical Trials Defined

Clinical trials focus on administering an experimental therapy in humans, as opposed to animals. Clinical trials are well-designed studies that collect information about new treatments for diseases and disorders. Most of the time, this means medications, but clinical trials can also test other things, such as stem cell therapies, surgical techniques, tests for diagnosis, and medical devices, to name the most common.

Clinical Trial Design

Often in a clinical trial, effectiveness is compared against a placebo (sugar pill with no medication in it), or another means of comparison. In the case of life-threatening diseases such as breast cancer, it is not acceptable to use a complete lack of real treatment as a comparison, so a comparison is typically made using another type of medication that is commonly prescribed and already approved for use in that particular indication or disease type. A comparison is needed to determine if the medication works (efficacy) and also to see if the medication is safe (adverse events). Researchers will design the clinical trial for a specific period of time, during which participants either get the treatment, or the comparison treatment. Sometimes the treatment is added on to the comparison as an extra treatment (add-on therapy).
Typically, a study is conducted using the “double-blind” method. This means that neither the researchers giving the treatments nor the participants know who is getting which treatment. This prevents “bias,” or expectations that could influence the outcome of the study.
Researchers providing the treatment will have a code that is later “unblinded” so that they find out what treatment they were giving. The researchers also record measurements while the participants are receiving the treatment. These measurements can be for different things, such as to determine if the treatment is working as well as to assess safety and side effects.
Assessments in a breast cancer trial might include survival, how long a person is cancer-free (remission), or if a person experiences reduced cancer (partial remission). Other measurements might include blood levels of the medications. If someone participates in a clinical trial, that person will be informed about the measurements that will be taken before the trial starts. An “Informed Consent” document tells participants about the trial.

Clinical Trial Phases

Phase I testing is the first step in studies involving humans. The purpose is to determine safety and to evaluate side effects. Phase I studies also test how the drug is absorbed, distributed and eliminated from the body. Often people who do not have the disease (healthy individuals) participate in Phase I. The number of people involved at this stage is usually small.
Phase II trials are often divided into Phase IIA and Phase IIB. Sometimes these two sub-phases are combined. Phase II trials further assess dosing and are designed to determine the best drug dose to use and how much of a dose is safe. Phase II studies can also measure efficacy and safety testing in small numbers of participants. Often a treatment must pass Phase II in order to proceed to Phase III.
Most reports of medical treatment studies focus on Phase III trials. These are the large trials that are required for a drug or other treatment to receive approval for use. The purpose of this phase is to test efficacy and safety as well as to monitor for side effects. The main drug effects are often called the primary efficacy endpoints. Other measurements may be called the secondary endpoints. Adverse events refer to the side effects that occur during a study. These are defined as being due to the medication or therapy given (treatment-emergent adverse events) or as simply things that occurred during the trial, whether they were due to the treatment or not (overall adverse events).
Phase III trials can include additional testing time after the main measurements are taken. This is known as an “extension” or “extension study.”
Occasionally, researchers conduct Phase IV trials, after a drug has been approved. These trials collect additional information about the drug or treatment. They are sometimes called “post-marketing” trials.

The Need for Clinical Trial Participation

Throughout the world, clinical trials are constantly recruiting patients and initiating studies to test investigational therapies and novel therapeutic options for diseases and conditions with unmet medical needs. Although people who are chronically ill or afflicted with a disease such as breast cancer participate in these trials, how clinical trials work or what they are designed to accomplish is not widely understood. However, as more people are made aware of the critical importance of clinical trial participation and how it advances research and the developing of next-generation therapies, increased support of the clinical trial process can potentially lead to accelerating the development of new treatments that can improve patient outcomes for diseases such as breast cancer.
Be sure to stay tuned to our exclusive, ongoing series of articles on clinical trials for breast cancer — exclusively at Breast Cancer News. Our next article will explore different types of breast cancer clinical trials, and what you need to know about how they are managed and what they seek to accomplish.

Sunday, October 21, 2018

Wednesday, October 17, 2018

Exciting news about a Triple Negative Breast Camcer Vaccime in Clinical Trials #mayoclinic #tnbc #brca1 



Monday, October 15, 2018

Making Strides Against Breast Cancer - Jacksonville

We had an AMAZING event, almost 12,000 people came out to support this cause, While the final numbers are not in yet, we raised and continue to raise well over last years numbers.

Thank you to the Jacksonville community for coming out strong for Breast Cancer.

There is NO CURE for Stage IV (Metastatic) Breast Cancer - we need more research, funding and clinical trials to find a cure for the 150,000 women living with MBC in the US today.

We lose 40,000 women a year in the US from this horrible disease and owe it to them to find a CURE!

In 2018, there is no reason why anyone should die from Breast Cancer.

I was honored to be the Event Chair for the Making Strides Against Breast Cancer in Jacksonville, Fl. I used my role to educate about MBC and elevate the messaging to no cure for MBC! Note my team shirt is NOT pink, in the sea of pink shirts! The back of the shirt said Stage IV - Still No Cure! 💕💕💕

#stageivneedsmore #tnbc #moreforMBC #dyingforacure #brca1 #clinicaltrials







There is no cure for Stage IV Metastatic Breast Cancer but only 5-7% research is focused on finding a cure - AND only 2% of Breast Cancer Patients participate in Clinical Trials to help find a cure. 

Estimates for funding for research for metastatic disease:  LOW

MBC focused research made up only 7% of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom.Metastatic  (MBC Alliance Landscape Report on Metastatic Breast Cancer10/13/14)
Only 5 Percent of Cancer Research Funds Are Spent On Metastases, Yet It Kills 90 Percent of All Cancer Patients [Science Daily, 6/2010]
Chart on Metastasis Funding:
metastasesfunding
Click to enlarge
Fewer than 8% percent of researchers mention the word ‘metastasis’ in their grant applications Unlocking the Mysteries of Metastases, January 2013, ACS website
“But as pointed out by ACS Scientific Council member Dan Welch, “Fewer than 8% percent of researchers mention the word ‘metastasis’ in their grant applications, in the context of actually working on the problem, …Figuring out how to prevent cancer – a key research focus today – would be the best approach, he agrees, but that’s of little help to patients who already have cancer. He further explains, “To prevent something, you have to know its cause. We have no idea why cancer cells spread, let alone what prompts them to disseminate throughout the body

Estimates for funding for research for metastatic disease:  LOW

MBC focused research made up only 7% of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom.Metastatic  (MBC Alliance Landscape Report on Metastatic Breast Cancer10/13/14)
Only 5 Percent of Cancer Research Funds Are Spent On Metastases, Yet It Kills 90 Percent of All Cancer Patients [Science Daily, 6/2010]
Chart on Metastasis Funding:
metastasesfunding
Click to enlarge
Fewer than 8% percent of researchers mention the word ‘metastasis’ in their grant applications Unlocking the Mysteries of Metastases, January 2013, ACS website
“But as pointed out by ACS Scientific Council member Dan Welch, “Fewer than 8% percent of researchers mention the word ‘metastasis’ in their grant applications, in the context of actually working on the problem, …Figuring out how to prevent cancer – a key research focus today – would be the best approach, he agrees, but that’s of little help to patients who already have cancer. He further explains, “To prevent something, you have to know its cause. We have no idea why cancer cells spread, let alone what prompts them to disseminate throughout the body


http://mbcn.org/research-funding/


Thursday, October 11, 2018

#thinkbeforeyoupink this year!

#thinkbeforeyoupink this year!

  • Be aware and help spread next level of Awareness:
  • Stage IV (also known as Metastatic) has NO CURE
  • 40,000 women in the United State die every year from MBC (Metastatic Breast Cancer/Stage IV
  • Clinical Trials save lives but only 2% of Breast Cancer patients in the US participant due to many reasons, here are some, No access to clinical trials, many communities due not have facilities that participate, awareness, fear of trying untested drugs - not true- patients in trials are surveilled more than if in standard of care, and more.

Wednesday, October 3, 2018

October Awareness - Day 3 - There is NO CURE for Metastatic Breast Cancer


A 2014 survey of more than 2,000 adults found that 72% incorrectly believe that breast cancer in the advanced stages is curable if diagnosed early *Source – Breast Cancer Survey – Sponsored by Pfizer Oncology, April 2014

Not true! There is no cure for Stage IV Breast Cancer. 

Tuesday, October 2, 2018

October Awareness - Day 2 - #StageIVneedsacure

There are more than 150,000 women in the US living with Metastatic Breast Cancer – Source – National Cancer Institute, May 18, 2017

1 in 8 women in the United States will be diagnosed with breast cancer

30% of these women will eventually progress of Metastatic Breast Cancer.

40,000 women in the United State die every year from MBC (Metastatic Breast Cancer/Stage IV

Monday, October 1, 2018

Watch Video - How can you get involved? --#MSABCJAX

Stage IV needs a cure. What can you do to help? Get involved! Watch now to learn more!

Watch Video- My Cancer Journey..... So Far

My Cancer Story video is a passion project, learn more about my story, Stage IV, Triple Negative, Clinical Trials, and my mission to help find a cure for breast cancer, by doing my part.
With being positive for BRCA1+, my daughter has a 50/50 chance of having the gene too. I will do anything within my power to ensure that she does not have to face Cancer in her lifetime.

To everyone who made this video possible, words cannot express my gratitude for this gift, that will not be wasted.  I am forever in your debt.

To everyone on my journey, from my doctors, the makers of Parp and Immunotherapy drugs, Clinical Trials, family, friends and strangers who have all become an important part of our lives, you have forever changed my life.

Thank you for watching my story and sharing it with your friends, family and network. This message is so important.

We need to change the focus on Breast Cancer Awareness to focus on finding a CURE for all Stage IV patients.

40,000 women a year die in the United States of this horrible disease, while approximately 150,000 women live and cope with it daily, waiting for a cure before it takes us too.

#stageiv #tnbc #brca1 #breastcancer #lucysworld

Got 2 minutes? Watch my video and Learn more about Stage IV Breast Cancer and My Story

This video is short summary of my Cancer Story.  #StageIV needs more - research, trials and a CURE!

Pink is not a Cure



My passion project for October Awareness Month 2018 is to educate and motivate, get more than just the "awareness" message.

October 1, 2018


  • Stage IV (also known as Metastatic) has NO CURE
  • MBC (Metastatic Breast Cancer) is cancer that has spread outside the breast to other organs, such as brain, liver, lungs, or brain. These tumors are Breast Cancer that reside in these organs not a different cancer. The cells of the tumors act and look like breast cancer and need to be treated as breast cancer
  • When someone has Breast Cancer with "mets" to their liver or brain - it is NOT brain or liver cancer now - it is still Breast Cancer that has spread. This is also Stage IV.