How Patient Advocacy Has Helped Me Find Purpose
One of my passions is helping others and sharing my perspectives on life. You never know who it may impact. Advocacy work is a part of my quality of life because I want to be that voice for those who may not have the courage to speak up on something that is or isnt right. Representation matters. I represent for the young, the Black women, the underserved, the nurses, and the Army spouses. I am an ally for the LGBTQ+ community, the men with breast cancer, and anyone else I meet who I support their ideals. I try not to lose hope even on the bad days. I have my bad day and move on. I dont waste precious time focusing on things I cannot control. Instead, I focus on what I can control.
If you feel something, say something to your provider, even if you think its nothing. Nothing is more detrimental to my quality of life than having uncertainty and anxiety. So dont be afraid to speak up.
These 3 Celebrities Are Living With Metastatic Breast Cancer
One in eight women will develop breast cancer, according to the American Cancer Society, so its not surprising when a celebrityor someone you loveshares a breast cancer diagnosis: Giuliana Rancic, Julia Louis-Dreyfus, and Wanda Sykes have all been open about their breast cancer diagnoses and treatments. Thirty percent of early-stage breast cancer patients will eventually see their disease return as metastatic cancer, meaning the disease has spread to other organsand that stat stands in Hollywood as well. The three women below are all living with metastatic breast cancer while also living in the spotlight.
You Will Be Surprised At How Quickly You Adapt
Nothing can prepare you for the shock of being told this news. From the moment you wake up to the moment you go to bed, for the first few months its all you can think about.
However you might feel now, you will not die tomorrow. You will have time to get used to this new normal Now is the time to be gentle on yourself. Trust me, you will smile and laugh again. You will find the joy in life that those without this diagnosis do not know.
If you find solace and a sense of control by changing your eating habits and exercising, then do it. But do not feel guilty if you cant. For the first year I drank a lot and ate terribly but Ive been stable for four and a half years. Dont beat yourself up about this.
Do not give up hope. I felt so broken and was so envious of those around me. The thought of being in treatment forever is overwhelming. You will be surprised at how quickly you adapt and build your life around it.
Take one day at a time and dont lose hope. This is a path that you cant imagine being able to walk down. But you will. You are stronger than you think. Dita
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Scan Results March 2020
A week ago I had a routine PET scan that indicated everything continued to look good. I feel very fortunate to continue to get results like these two years after my initial metastatic diagnosis. Following the scan I wrote the quick update below. In the craziness that has happened due to spreading COVID-19 in the past seven days, my cancer scan results seem pretty insignificant in the grand scheme of things. My kids school is closed through the beginning of April. We have been isolating ourselves and while Travis and I are still working on-site, its touch and go. Being in healthcare, my job will never really close. I am lucky in that for the next two weeks I am working the night shift and I have family able to help with childcare, but the stress of managing my family and my job in these uncertain times is weighing on me heavily. My thoughts are also with several of the at risk people in our community, many who help deliver the medications I prepare to local hospitals, and are very much more susceptible. So, while I will happily share the passage I wrote, my heart is heavy with the sadness and uncertainty that is affecting all of us.
Happiness Will Creep Back In If You Let It
We went home and I mourned myself for two weeks and thought hard about a way out of this, but there wasnt/isnt. So, Ive chosen to obsess with diet, exercise, and research. Ive always eaten well and exercised, or so I thought, but Im now healthier than ever and have to admit I am happy. I know that sounds strange, but I believe if you are willing, happiness will creep back in if you let it, I promise.
In short, I found obsession with nutrition my thing to occupy myself and it definitely wont hurt to stay as fit as possible for this SOB called cancer. Thicket
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Being Your Own Advocate
While there aren’t currently any studies looking at self-advocacy and survival, being your own advocate can’t hurt in maximizing your survival. Oncology is changing rapidly and it’s difficult for any oncologisteven those who specialize in breast cancerto stay aware of all of the latest research and clinical trials taking place.
It can be helpful to research your cancer yourself. Becoming involved via social media such as Twitter is also an excellent way to learn about the latest research, using the hashtag #bcsm, which stands for breast cancer social media.
Getting a second opinion can be helpful as well, especially from one of the larger cancer centers such as a National Cancer Institute-designated cancer center.
There are ways to learn about opportunities, however, that don’t require traveling for opinions. There are now clinical trial matching services in which a nurse navigator can help to match your particular tumor and characteristics with clinical trials in progress all over the world.
Several of the larger cancer centers are now also offering remote second opinions, in which an oncology team can review your medical information and talk to you on the phone about whether there are any opportunities for treatment for you that may not be available elsewhere.
Improving Your Quality Of Life
Quality of life is a term that is used a lot with metastatic disease, but it should be a common term for others too. I always go by the life motto of, Enjoy life. I do not take this lightly. I know there will come a time where I wont be able to do what I am capable of doing today. This can all drastically change even in a week. Shoot, I could even be dead in a week. Cancer progression is a scary concept. At any point, the cancer can spread to other places or grow bigger in the same locations of the body, such as the lungs, brain, liver, and bones. So, I must do as much as I can while I can, until I cant.
To other people living with metastatic disease, my advice would be to live life on purpose the way you desire. Dont let others place what you should be doing onto you. If you want to eat cake today, eat cake, because tomorrow you may not have an appetite. If you want to travel and the risk is lower and the benefit is higher, then travel.
The only thing guaranteed in this world is death. So, until that day has come for me, Ill live it up and do what gives me joy despite all the everyday stressors. I read daily inspirational writings on how not to care so much what others think of me. I am genuinely me.
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Survival Rate With Metastatic Breast Cancer
Many people wonder about the life expectancy for stage 4 breast cancer . It’s important to note that everyone is different and survival rates vary widely. There are some people who survive many years and even decades with stage 4 disease. At the same time, it’s important to understand that stage 4 breast cancer isn’t curable.
It can be helpful to look at current statistics and consider the many variables that affect life expectancy. While it’s important not to raise false hope, it may help to know the reality that there are some long-term survivors.
Some people want to know the statistics, but many don’t. If you’re living with stage 4 breast cancer, there is absolutely no requirement that you know the prognosis. The information provided here is only for those who truly wish to know what the current research iseven this research has many limitations.
It Was So Much Harder The First Year Than It Is Now
Its been almost three years since my diagnosis of MBC and I can tell you, it was so much harder the first year than it is now. Like many, my first thoughts were focused on dying, planning my funeral, and getting my affairs in order. I spent most of the first year feeling very sad and crying a good part of the time. Every new ache and pain scared me silly.
Nearing my one-year anniversary, I totally fell apart, so I took myself to a doctor and got on an antidepressant. Seeing that doctor was one of the best things that could have happened! After listening to my story, his words were: Girl, go home and get your s*** together! Stop dying and start living! It may sound harsh but it was exactly what I needed to hear.
Ive tried to live that way ever since and my life has been so much better. Yes, I still worry over every new ache and pain, but take a pain pill and get on with my life. I go on vacations, shop, make all kinds of things, and live as normally as possible.
Heres my advice: Give yourself time. Its a shock and you wont be thinking clearly at first. Dont be afraid to ask for, and demand, any meds you need for pain, sleep, depression. A few sessions with a cancer counselor can be beneficial.
After the shock is over, look into your financial needs. I didnt realize I qualified for disability until six months later. Once I applied, I received my acceptance letter three weeks to the day
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Treatment Plan For Metastatic Breast Cancer
Rochelle Consignado:
Well, actually, my doctor… Even before I ask, she says, “Oh, there are some things that we can try if this doesn’t work.” I like that she’s already thinking ahead, or as I call it, she’s already thinking of the other bullets in the gun that she chooses.
Sandi Spivey:
How about you, Brittany? Do you know what you’d go on next if this stops working?
Brittany Shook:
I do not. I got a second opinion out-of-state. That oncologist gave me a list of things, but my oncologist didn’t. Her goal is to keep me on what I’m on now for as long as possible.
Sandi Spivey:
Right.
Brittany Shook:
I will ask her that next time. I see her at the end of the month. Thank you.
Sandi Spivey:
How about you, Jennifer? Do you know what plan B is for you?
Jennifer George:
I did the same thing as Brittany. I went to get a second opinion at a research hospital. My next… It’s going to be clinical trial. I know the next one, and I do know the clinical trial, but I only was able to get that by going for a second opinion. I can’t emphasize that enough for us that are with MBC, to go ahead and do it, and go talk to other specialists, and find out what they have to say. It makes a big difference. Now I know exactly. That’s not a gray area for me.
Sandi Spivey:
Now, more and more people are doing these second opinions over the phone, so you don’t have to fly out to Houston, or Boston, or New York, or wherever.
Jennifer George:
Right.
Sandi Spivey:
Staging And Grading For Stage 4 Cancer
Most cancers are staged using some form of the TNM system. Doctors may also use the TNM system to help determine the extent of certain cancers in each stage. The TNM system stands for:
- T , or the size of the original tumor
- N , or whether the cancer is present in the lymph nodes
- M , or whether the cancer has spread to other parts of the body
Not all cancers are staged using the TNM system, though. Some cancers, especially liquid cancers, are staged through different established protocols. The Binet and Rai systems, for example, are used to stage certain types of leukemia. Female reproductive system cancers, such as cervical cancer, are staged with a separate staging system created by the International Federation of Gynecology and Obstetrics .
As your care team gathers information about your cancer for the purposes of staging, they may need to order several tests, including:
Your care team may likely also need to perform a biopsy, a procedure that involves removing a sample of cells and analyzing it for signs of cancer. Imaging scans may be able to tell your care team where your cancer is, but looking at the cancer cells specifically tell them how fast they are likely to growor what grade they are.
Grading is different from staging and is done for most, but not all, cancers.
The grade of your cancer is part of how your cancer care team stages your cancer and determines your prognosis, or outlook.
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Recurrence Of Metastatic Breast Cancer
Metastatic breast cancer is considered a chronic disease, so it doesnt go away and recur.
But in recent years, people under age 50 have seen a particularly strong decline in death rates due to breast cancer, according to the Centers for Disease Control and Prevention .
These declines are due in part to improved screening and treatment for the disease.
There are a few general facts that are helpful to know about breast cancer outlook:
- Breast cancer is the most common cancer diagnosis in the United States, according to the
Local Or Regional Treatments For Stage Iv Breast Cancer
Although systemic drugs are the main treatment for stage IV breast cancer, local and regional treatments such as surgery, radiation therapy, or regional chemotherapy are sometimes used as well. These can help treat breast cancer in a specific part of the body, but they are very unlikely to get rid of all of the cancer. These treatments are more likely to be used to help prevent or treat symptoms or complications from the cancer.
Radiation therapy and/or surgery may also be used in certain situations, such as:
- When the breast tumor is causing an open or painful wound in the breast
- To treat a small number of metastases in a certain area, such as the brain
- To help prevent or treat bone fractures
- When a cancer is pressing on the spinal cord
- To treat a blood vessel blockage in the liver
- To provide relief of pain or other symptoms anywhere in the body
In some cases, regional chemo may be useful as well.
If your doctor recommends such local or regional treatments, it is important that you understand the goalwhether it is to try to cure the cancer or to prevent or treat symptoms.
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What I Wish People Knew About Metastatic Breast Cancer
Women with metastatic breast cancer think about fighting cancer very differently than women who don’t have a stage 4 diagnosis. If you have advanced cancer, these women understand what youre going through.
The term metastatic breast cancer describes breast cancer that has spread beyond the breast to the bones, liver, brain, or another organ. Even if the cancer is found in another organ, its still referred to as breast cancer and is treated as such.
While metastatic breast cancer is terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, a lack of information and many misconceptions about this diagnosis persist.
Treatment Of Stage Iv Breast Cancer
Stage IV cancers have spread beyond the breast and nearby lymph nodes to other parts of the body. When breast cancer spreads, it most commonly goes to the bones, liver, and lungs. It may also spread to the brain or other organs.
For women with stage IV breast cancer, systemic drug therapies are the main treatments. These may include:
- Some combination of these
Surgery and/or radiation therapy may be useful in certain situations .
Treatment can often shrink tumors , improve symptoms, and help some women live longer. These cancers are considered incurable.
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Life Expectancy Of Stage 4 Breast Cancer
According to the American Cancer Society, 22% of the patients live five years after being diagnosed of stage 4 breast cancer. Compared to earlier stages of the cancer, this rate is considerably lower. At stage two, the five year survival rate is at 90% and at stage three, it is 72%. This shows that an early diagnosis is important for better chances of survival.
Predicting survival rates for patients are never really accurate. Your age, general health, hormone receptors on cells with cancer, the type of tissue the cancer has affected and your general outlook on life all affect your stage 4 breast cancer life expectancy.
About 50% percent of women who are diagnosed with stage four breast cancer are still alive 18 months after their diagnosis. Over the years, life expectancy for stage four cancer has been steadily and slowly improving. This has been mainly due to combination treatment of surgery, radiation, multiple medications, and a much more positive support network.