By Sunny Sea Gold @sunnyseagold
Sunny is a health journalist with deep expertise in women’s and children’s health who has written for some of the largest and most well-known print and digital publications in the United States. She’s also the author of the book Food: The Good Girl’s Drug, and writes essays and reported pieces on body image, eating disorders, parenthood, and mental health.
Sunny lives in Portland, Oregon, with her husband and two daughters.
When breast cancer spreads to other areas of the body such as the liver, lungs, or bones,
it’s known as stage IV, or metastatic breast cancer. Metastatic breast cancer (MBC) is considered incurable, and five-year survival rates are about two-thirds lower than cancers that haven’t spread, according to the American Cancer Society. But numbers like that never, ever tell the whole story. Today, women and men with MBC are living longer, better lives than ever before. Here is what patients who have been living with MBC—for three, six, even 23 years—want other patients
and their loved ones to know.
Patient to Patient: Statistics Do Not Dictate Your Journey.
“What has stuck with me during my 16 years of living with metastatic breast cancer is ‘You are a statistic of one.’ I especially think of this when I hear that a friend with my type of metastatic disease has passed away,” says Shirley Mertz, chair of the Metastatic Breast Cancer Alliance. The five-year average relative survival rate for MBC may be 27 percent, but how long an individual patient lives depends on a huge number of factors including age, type of tumor, general health, treatments and how much the cancer responds to them, according to the American Cancer Society).
Remember, your illness and experience is unique to you.
Pam Kohl, executive director of Komen’s Triangle to the Coast affiliate, said,
“We have to keep cancer in the breast. If we keep it in the breast, it doesn’t kill.”
Look for a Breast Specialist, Not Just a Cancer Doc
“One thing I wished I’d known at the beginning of my metastatic diagnosis was the importance of having an oncology breast specialist,” says Jen Heatherly, 47, a health coach in Vista, CA. “When I was diagnosed with stage IV cancer, the oncologist in the hospital did a great job getting me started on oral medications. However, when that line of treatment failed, and we were discussing other options, he made the comment, ‘You know more about the new drugs than I do,’” she says.
Delegate, Delegate, Delegate
My name is Christine Hodgdon and at the age of 34, I was diagnosed with de novo stage IV metastatic breast cancer (MBC). I endured all my treatments, which resulted in a complete response, and I currently have no evidence of disease (NED) in my body. Even though I have NED, I am still a stage IV patient and always will be. I can never be “upgraded” to stage 1, 2, or 3 or even say that I’m in remission; I am merely “stable” for now. Every 6 months I am scanned to monitor any progression of my disease. I will be on treatment for life with monthly targeted therapy infusions every 3 weeks, as well as hormone therapy, to manage my MBC. You can read more about my story HERE.
https://www.breastcancer.org/community/podcasts
Friends and Family: Listen More, Talk Less
“Supporting someone after an MBC diagnosis is really difficult, but the best advice I can offer
is to listen more, talk less,” says Hodgdon. “Some people will talk a lot about their diagnosis, others will withdraw. Respect the needs of the person whose world has been turned upside down. And if you need support, do not rely on the patient to give it to you. Seek outside help by joining a support group, seeing a counselor, or sharing with trusted friends. The patient should not have to bear the burden of comforting others. They are facing their own mortality while likely enduring grueling treatments that leave them physically fatigued.”
“A dear friend, who was also a breast cancer survivor, told me that ‘Cancer takes a village,’ recalls Hodgdon, who serves on the Patient/Advocate Advisory Group of the Metastatic Breast Cancer Alliance. “A new diagnosis can quickly take over your life and become a full-time job. The best thing you can do for yourself is to allow those who love and support you to help,”
she says.
“Even better, delegate to family and friends exactly what you need, whether it be preparing meals, scheduling appointments, accompanying you to treatments, watching your children, caring for pets—the possibilities for support are endless! This was a difficult lesson for me to learn, but once I started delegating, everyone (myself included!) was much happier.”
1. Get to Know Other Patients
“When you are ready, meeting other MBC patients will be your greatest source of comfort and solace,” says Hodgdon. “You are not alone. There are many others who have been diagnosed metastatic while young, pregnant, just before their wedding day, or just as their career was taking off. “These other patients know better than any doctor how to overcome the helplessness one feels after an MBC diagnosis. No matter where you fall on the MBC spectrum–newly diagnosed, in active treatment, near the end of life, or stable with no evidence of disease–
you can always find someone to share the space with you.”
2. Keep a Journal
The Spirit to Impact award is given to an individual that is making an impact by supporting survivors/thrivers and being a catalyst for change in breast cancer outcomes. It’s really common for people with MBC to feel as though they’re to blame for their diagnosis, notes Hodgdon. So “avoid questions that seek to determine how the person came to have cancer,
like ‘Did you forget to get a mammogram? Did you wait too long to see a doctor? Do you think your diet played a role?’ They serve no purpose but to shame the patient for all the things they did or did not do to result in a cancer diagnosis.”
Stephanie Walker, 60, a self-described MBC thriver and advocate in Tarboro, NC recommends keeping a notebook handy at all times to jot down important dates, questions, thoughts, and emotions. Is a career nurse who spent the last 10 years as a hospice nurse.
She was diagnosed with metastatic breast cancer in July 2015, and in February 2019, was forced to retire from 37 years of nursing due to her diagnosis. Stephanie served on Komen NCTC’s Understanding Stage IV: Metastatic Breast Cancer conference planning committees for Edgecombe, Halifax, Nash, and Wilson counties.
In addition, Stephanie has lobbied members of congress for adequate access to care and serves as a mentor and supporter to so many others diagnosed with MBC. Stephanie and her husband, John, have been married for 19 1/2 years and currently live in Tarboro, NC. They have three grown children, six grandchildren, and a deaf Lab mix rescue, Bella. Today, Stephanie advocates on behalf of the metastatic breast cancer community and works on behalf of the underserved.
“Breast cancer doesn’t kill people … metastatic breast cancer kills people,” explained MBC Thriver Stephanie Walker of Tarboro. Walker, a member of the planning committee and a panelist, was diagnosed with MBC in July 2015 and will receive treatment for the rest of her life. “It (cancer) is in my bones. I will never be cancer free. My markers might be stable,
but I will always have cancer,” she said.
“I journaled during treatments and took down the names of technicians and nurses along
with which treatments they were administering. And I made notes while I was with my doctor,” says Walker, who was diagnosed in 2015, but has been stable after treatment—with
no evidence of active cancer—since 2016. “I also wrote my deepest thoughts and expressed
my emotions, including sometimes my anger.”
Not only will a journal help you remember details about what your doctors say during appointments, you can also track emotional and mental-health symptoms like anxiety or depression. A visual reminder can make it easier to spot changes in how you’re feeling and prompt you to seek extra support when you need it.
3. Your Quality of Life Matters.
SAN ANTONIO — Researchers seeking certain breast cancer grants now require patient advocates to be part of their teams, and one advocate speaking at the San Antonio Breast Cancer Symposium (SABCS) here has developed an innovative way of providing interested investigators with case studies of successful collaborations.
Patient advocate Susan W. Rafte, 55, who organized the session, told Med Page Today
that advocate involvement in SABCS’s program has been an evolutionary process.
“When I was first diagnosed in 1996, I went into fight mode: Do anything at all costs,” says Rafte, , a member of the Patient/Advocate Advisory Group of the Metastatic Breast Cancer Alliance. “Fortunately this approach worked for me. However, the more I have walked with others living with metastatic disease, the more I realize how important it is to step back and look at the big picture. We can become very desperate and lost when facing a terminal disease, and at times we need to remember or be reminded that quality of life
is an important tool to make decisions.”
If You Don’t Know What to Say, Just Say That!
“I received unconditional and immediate support from friends and family. I was especially touched that people whom I didn’t know well took the time to send me cards or ask how I was doing,” says Katherine O’Brien, a patient advocate with Metastatic Breast Cancer Network. “But it’s best to avoid saying things like, ‘Everything will be fine!'(you have no idea if things will be fine) or ‘You got this!’ (Yes, I know I have this. Hence my struggle to cope with this crushing news!) You can always say, ‘I am sorry you are dealing with this.’ Or ‘I don’t know what to say. How are you doing with all this?’ Or, as one my brothers said when I told him,
‘Well that sucks.'”
In every chemotherapy infusion suite, there are cancer patients who will never finish treatment. They may be dying or have to endure brutal chemotherapy for the rest of their lives. It’s “insensitive to have a dance party” in front of them, wrote Katherine O’Brien, a patient advocate with the Metastatic Breast Cancer Network, on LinkedIn. She’d rather see the staff quietly hand out certificates of completion.
“If I ran a cancer clinic, there would be no bell in the infusion area,” wrote Katherine O’Brien,
a patient with stage IV cancer and an advocate for the Metastatic Breast Cancer Network,
in a 2018 essay. “How would YOU like to be there week after week in perpetuity attached to an IV pole as others celebrate their final appointments?” What’s more, the ceremony – meant to signify the beginning of life cancer-free – could also set up false hope for people whose cancer recurs, noted Dr. Patrick A. Williams, MD, “Many patients I’ve spoken with mention a lingering fear of recurrence that may impact their memory of treatment,” he said.
4. The First Few Months are the Most Stressful!
I have lived with stage IV breast cancer for 10 years, and I can honestly say wrapping my head around this diagnosis was incredibly difficult,” says Katherine O’Brien, “I have had many challenges as result of this disease but nothing was harder than the stress of those first few months. Don’t do anything drastic, like shaving your head or cashing in your 401k, until you have a better idea of what you are dealing with.”
5. Seek an NCI Cancer Center If You Can.
Along with finding a oncological breast specialist, seek care at a top research and/or teaching hospital. “I wish I had started at an National Cancer Institute-designated cancer center. They are on the cutting edge of research, the best of the best,” says O’Brien.”You can find a list online. If it’s impractical to pursue care at an NCI center,
you can at least seek a second opinion at one.”
This workshop provider insights from Katherine into many questions about metastatic breast cancer (MBC) of interest to patients, their families and loved ones. Key questions include: How many people are living today with MBC? How many early stage breast cancer patients experience a recurrence, and how might we track recurrence in national registries? How can we learn more about MBC and how can patients get involved? Lastly, what advances in science and technology have enhanced our ability to study MBC at the cellular level that could lead to treatments that extend life and improve quality of life for people living with MBC? https://www.youtube.com/watch?v=ghoak2KwSrg
6. Offer to Set Up a Meal Train
“My friends have been so incredibly supportive every step of the way,” says Marina Kaplan, who’s been living with a particularly aggressive type of cancer known as metastatic triple negative breast cancer for six years. “Something that helped a lot was that friends set up a ‘meal train’ for rides and meals that I can activate whenever needed. I don’t use it often, but it’s great to have it and be able to specify what I need and when. People always ask what they can do for us and having them be a part of the group enables them to help in a meaningful way.”
7. Be Careful Not to Blame or Shame
https://lakesidelink.com/blog/
lakeside/understanding-toxic-shame/
Ms. Kaplan’s inspiring life history as an “outlier survivor” as she put it for having achieved remission from triple-negative breast cancer over six years ago was helped by numerous cutting-edge clinical trials made accessible to her. But the experience as a study subject exposed her to systemic barriers confronting breast cancer patients everywhere, compelling her to reprise her epidemiology career expertise in conducting a study looking for novel solutions, as she shares with Dr. Matt Birnholz at the 2019 San Antonio Breast Cancer Symposium. Marina Kaplan has been living within a balance with metastatic triple-negative breast cancer for 6 years. Diagnosed at stage II in 2011, she progressed to stage IV, metastatic, in 2013. She lives in Atlantic Beach, Florida with her husband and two dogs, and is the proud mother of wonderful twin daughters. Read more.
8. Please Support Our Families, Too
“I want others to know that my children and husband are also living with this disease, so please support them, too,” says Helen Black, a mother of nine who was diagnosed in 2017 and now volunteers with Living Beyond Breast Cancer. “All of my children were able to take a turn coming chemo with me, except my youngest who was 10 years old. The Guests had to be at least 12,” she says. “That was hard for her, and for me, too,” Black continues. “But a dear friend worked something out with the nurses and she was able to bring my daughter to see the suite, and then we had a snack together in the kitchen area..
https://www.youtube.com/watch?v=34OpTyYXkOQ
9. Remember That We Have Lives Outside of Cancer
“My friends understand that I don’t want cancer to define me,” says Sherroll Reese, 38,
a talent-acquisition specialist in Austin, TX. “We still talk about the same things that single woman talk about—love, relationships, sex and many other topics, but my cancer is never the main topic of conversation. They allow me to share what I want to share and never try to pull my feelings, health updates or fears. Still, if I bring it up they’re all ears.”
Reese’s friends also hit the gym with her, like any other gym buddy. “I have continued working out, maybe even harder than I did before my diagnosis. I always laugh and say ‘I have 99 problems, but my heart’s not one.’ Many of my friends have taken classes with me at my favorite spot to keep me motivated.”
10. More Help and Advice
Although metastatic breast cancer hasn’t always gotten the attention or research focus that it deserves, there are now several amazing organizations specifically dedicated to educating and supporting MBC patients and their families. Start here:
Metastatic Breast Cancer Network The MBCN is a wealth of information for the newly diagnosed patient and MBC veterans. You can find information on everything from interpreting a new diagnosis to detailed info on specific treatments. You can also browse current clinical trials looking for patients, read dozens of stories of MBC patients, and even get info on
financial assistance for treatment.
Metavivor Metavivor began as a patient support group in Annapolis, MD, and then grew into a major research-funding powerhouse. In 2018 alone, the group awarded more than $2.3 million in grants to researchers studying MBC. Metavivor is still dedicated to patient support, and facilitates dozens of peer-to-peer groups around the United States.
Metastatic Breast Cancer Project This project offers patients an opportunity to participate in important MBC research right from their own home—by offering top researchers access to their medical records, providing a saliva sample for DNA analysis, and filling out a health questionnaire.
Could Breast Cancer Be Caused By An Infectious Disease or Hormonal Issue?
. Studies have found higher levels of IGF-1 in the blood may increase the risk of breast cancer. At this time, there’s no standard way to measure blood levels of IGF-1, but one day, measures of blood levels of IGF-1 may help estimate breast cancer risk. The risk of breast cancer in women with high IGF-1 also doubled. Men are not immune to the cancer risks of IGF-1, either.
A similar study on nearly 15,000 men showed that the likelihood for developing colorectal cancer was four times greater for those with high IGF-1 levels. The likelihood of developing prostate tumors also increases.
Although the prognostic value of IGF-1R expression is debatable, in vitro studies have demonstrated that IGF-1 contributes to breast cancer growth by promoting cell proliferation and chemotherapy resistance. The role of IGF-1, IGF-1R, IGFBPs, Hybrid-Rs, and IGF signaling crosstalk in breast cancer. When IGF-1 levels are too high, some forms of cancer grow more easily (mainly prostate and breast). However, when IGF-1 levels are low, risks of cardiovascular disease, dementia, Alzheimer’s, and sarcopenia are all much higher.
In fact, death to cancer is also more common with low IGF-1 too, due to increased risk of cachexia (muscle wasting).
Much like other cancer types could Infectious agents, such as bacteria, parasites and viruses. Infection with the bacterium Helicobacter pylori predisposes someone to gastric cancer. Chronic infection with HBV, HCV predisposes to hepatocellular carcinoma. In this blog post you can find list of bacterial, viral and parasitic agents that has found to cause or predispose individuals to various types of cancer.
https://www.healthline.com/
nutrition/dairy-and-cancer#section4
https://www.bing.com/videos/
search?q=larvae+and+cancer&FORM=HDRSC3
List of viruses that causes cancer:
Hepatitis B virus (HBV) and hepatitis C virus (HCV) are associated with liver cancer (Hepatocellular carcinoma)
Epstein-Barr virus (EBV) is associated with lymphoma and nasopharyngeal cancer.
EBV is the primary cause of infectious mononucleosis but EBV is also a causative agent in
many aggressive neoplasms, including 20% of cases of Hodgkin’s lymphoma (one of the most common lymphomas of adolescence), nasopharyngeal carcinoma, and a subtype of Burkitt’s lymphoma.
Human papillomavirus (HPV) is a major cause of cervical, anal, penile, and oropharyngeal cancer. The most common clinically significant manifestation of persistent genital HPV infection is cervical intraepithelial neoplasia (CIN). HPV-16 and HPV-18 is implicated as the cause nearly 70% Carcinoma of the cervix
Human herpesvirus 8 (HHV-8) is the causative agent of Kaposi’s sarcoma.
Human immunodeficiency virus (HIV): HIV does not cause cancer directly but HIV infection increases a person’s risk of getting several types of cancer such as Kaposi sarcoma, invasive cervical cancer, non-Hodgkin lymphoma and central nervous system lymphoma etc.
Human T-lymphotrophic virus-1 (HTLV-1): HTLV-1 has been linked with a type of lymphocytic leukemia and non-Hodgkin lymphoma called adult T-cell leukemia/lymphoma (ATL).
List of Bacterial/Parasitic agents linked with cancers.
Chronic infection with Helicobacter pylori predisposes to stomach cancer and to gut mucosa-associated lymphoid tissue (MALT) lymphoma. Schistosoma haematobium, a parasitic flatworm is associated with high incidence of bladder cancer. Opisthorchis viverrini and Clonorchis sinensis are liver flukes (a type of flatworm) that have been linked to increased risk of developing cancer of the bile ducts.
EGGS AND PROSTATE CANCER…A WORD TO THE WISE!!!
If you have had prostate cancer (PC), or are at high risk of the disease, it would be prudent to stop eating eggs more than occasionally, especially if you live in North America. Interest in this topic began in 2004, but the thinking at that time was that eggs were innocuous. But this was followed by a “bombshell” study from the Harvard School of Public Health, Boston, showing that “greater consumption of eggs…was associated with [a] 2-fold increases in risk” of a diagnosis of fatal PC compared to men who consumed the fewest number of eggs. A 2011 follow-up study from the same group found that “men who consumed 2.5 or more eggs per week had an 81 percent increased risk of lethal prostate cancer compared with men who consumed less than 0.5 eggs per week.” This led to considerable publicity in the United States. Also Soy Myths Exposed The Dangers of Soy – YouTube (Non GMO is safe.)
A follow-up 2015 study found a 47 percent increased risk of life-threatening prostate cancer.
A 2016 study from the same group similarly found that high intake of eggs was associated with a doubled risk of advanced PC. These are observational studies, of the kind that can find correlations, but do not provide proof eggs themselves cause PC. That idea is simplistic, in any case. (The Chinese have the highest rate of egg consumption in the world and also one of the lowest rates of fatal PCs.) But there is a biochemical mechanism by which eggs could plausibly promote PC: yolks contain an abundance of choline, a B-vitamin like substance that is found abundantly in prostate cancer.
The Harvard authors also found that men with the highest intake of choline had a 70 percent increased risk of being diagnosed with lethal prostate cancer. (Choline is even the basis of an FDA-approved PET scan for prostate cancer.)
https://www.pcrm.org/good-
nutrition/nutrition-
information/health-concerns-with-eggs
https://nutritionfacts.org/
2013/11/19/why-are-eggs-linked-to-cancer-progression/
Of the 27,607 men included, 199 died of prostate cancer during the study. When the researchers analysed the association between eating habits and risk of lethal prostate cancer when using data up to the point of initial diagnosis, they found that: Men who consumed more red meat or eggs tended to exercise less and have a higher BMI, were more likely to smoke and have a family history of prostate cancer.
https://dailyhealthremedies.
com/10-everyday-cancer-causing-foods/
https://www.medicalnewstoday.com/articles/316720#fiber