A Wake Up Call for Young People With Metastatic Breast Cancer…And All of Us

By Katherine O”Brien, Secretary and PR Chair, MBCN

Do you remember “Love Story?” Oliver Barrett IV (Ryan O’Neal) and Jennifer Cavilleri (Ali McGraw) are the improbable lovers who defy parental disapproval and get married.

The only way to be surrounded by more sap would be to visit Vermont during the peak months of maple syrup production. Remember the hilarious send up on “Carol Burnett”?

Reviewers at Amazon call “Love Story” a cheesy sob story. (“If I ever hear Ali MacGraw say ‘preppie’ again I will probably spontaneously combust,” declares one commenter.)

Sobering Reality of Real Life…

I agree with all of those observations. And, a few years ago, I would also have hooted about a specific plot point—McGraw’s character dies at age 25 after being diagnosed with leukemia. Unfortunately, I have lost many friends to metastatic breast cancer (MBC). I know from painful experience that people do indeed die from breast cancer in their 20s and 30s.

Bridget Spence was 29.

What can you say about a 29-year-old-girl who died? That she was beautiful. And brilliant. And that this just totally sucks.

Bridget was diagnosed with breast cancer at 21. She had no family history. I used to think cases like hers were rare. Now I’m not so sure. As a patient advocate for people with metastatic breast cancer, I know a lot of people with both early and advanced breast cancer and they are young, old,  and all points in between. But I was frankly shocked when I saw the turnout for the “Under 40 & Living With Metastatic Breast Cancer” panel at the 2012 MBCN Conference.

Jen Smith, 36, has been living with Metastatic Breast Cancer since age 31, shortly after her son’s birth.

It seems like I know an awful lot of young mothers like Jen Smith  with metastatic breast cancer. Now, I consider myself fairly well informed on breast cancer risks such as gender, family history, dense breasts and so on. I knew that NOT having children increased a woman’s risk, due to the unopposed flow of estrogen. But until this year, I never knew that recent childbirth can temporarily increase one’s breast cancer risk. As noted on www.cancer.gov: 

Women who have recently given birth have a short-term increase in risk that declines after about 10 years. The reason for this temporary increase is not known, but some researchers believe that it may be due to the effect of high levels of hormones on microscopic cancers or to the rapid growth of breast cells during pregnancy (15). [Source: http://www.cancer.gov/cancertopics/factsheet/Risk/reproductive-history]

I don’t recall ever seeing any article or other information on this issue. I would guess that many obstetricians assume—as seems reasonable—that cancer is a disease of aging. And nursing mothers have a host of potential breast problems: blocked milk ducts, soreness, etc.

But I don’t seem to be the only one who thinks more young women—mothers and non-mothers alike—are getting metastatic breast cancer.

Is MBC Incidence  Rising in Young Women?

Rebecca H. Johnson, MD, of Seattle (Washington) Children’s Hospital and the University of Washington in Seattle, noticed that evidence from the National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database suggested that  incidence of metastatic breast cancer in young women is on the rise. Johnson and her fellow researchers recently released a study that found “a small but statistically significant increase” in metastatic breast cancer over the last three decades among U.S. women aged 25 to 39 years.

The researchers found that in women aged 25 to 39 years, the incidence of breast cancer with distant involvement at diagnosis increased from 1.53 per 100,000 in 1976 to 2.90 per 100,000 in 2009, representing an average compounded increase of 2.07% per year over the 34-year period. No such increase was seen in any other age group or in any other extent-of-disease subgroup of the same age range.

The rate of increasing incidence of distant disease was inversely proportional to age at diagnosis, with the greatest increase occurring in women aged 25 to 34 years.

Dr. Johnson was diagnosed with breast cancer (presumably early stage) at age age 27. “I’d meet young women patients with breast cancer and it seemed like a lot of friends of friends had breast cancer,” she told @newsJAMA. “And yet the literature kept saying that breast cancer in young women was rare.”

Her  study didn’t  evaluate cause. “The next steps for researchers will be to examine potential causes for this trend and look at etiologies,” she said. “Given there’s such a change over a short amount of time, we may find modifiable risk factors or potentially toxic exposures that are fueling this increase.”

She further explained that the research shouldn’t be taken out of context.  “What the average young woman [under 50] should not do is go get a mammogram, because while on a population level we saw a statistically significant increase, it’s not a large increase of risk for an individual. One thing that has the potential to affect young women’s survival is earlier detection—seeing a physician if you find a lump instead of ignoring it.”

How Can We Manage What We Don’t Measure?

CURE magazine’s Dr. Debu Tripathy noted that the research is based on “cancer registry data, which is very good at capturing data at the time of diagnosis, but not long-term follow-up (other than death). So this is really looking at the less common situation of women who actually present with metastases at the time of their original diagnosis – which only happens about 5 to 10 percent of the time, and perhaps more so in women who do not have access to health care and present with higher stage cancers.”

Dr. Tripathy is correct about that cancer registry data. NCI and SEER database record only incidence, initial treatment and mortality data. And, as Dr.Tripathy further correctly observes, most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.

So here’s the good news: Most people don’t start with metastatic breast cancer, which is what the cancer registry tracks.

…And the bad news: We really have no idea what’s going on with, you know, the MAJORITY of people who are diagnosed with metastatic breast cancer after a recurrence. As Dr. Tripathy says, other than death, the cancer registry doesn’t concern itself with long-term data.

So to recap: We know for sure that 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those who had a metastatic recurrence? The cancer registry does not track them—until they die.

“While [Dr. Johnson’s] report should not cause alarm or even affect any of our care guidelines, it may be a wake-up call to truly understand what might be driving this,” concludes Dr. Tripathy.

May be a wake up call?

MAY???

Well, gosh, no rush or anything. I mean, if it wouldn’t be a bother, maybe somebody could work on that truly understanding thing.

If I sound angry, it’s because I am. And so are my fellow patient advocates.

If Not Now, When?

“We need focused research to change incurable metastatic breast cancer into a treatable, chronic condition like HIV-AIDS–where patients can now live for 20-30 years with treatment after their diagnosis,” says Shirley Mertz, President of MBCN. “If gay men, who were then scorned by society in the 1980s, could demand and receive focused research and treatments for their disease, why can’t we women–who are wives, mothers, daughters, sisters and grandmothers AND over half of the population–receive similar research that will find strategies to keep us alive for 20-30 years?

“Are we not worthy of this effort?  Are we ignored because we quietly live with our disease?”

So, yes, Dr. Tripathy, you bet your stethoscope this is a wake-up call.

Because as Shirley says, “How many more thousands of us must die before the public and our sisters, who have survived early stage breast cancer, stand with us and for us?”

Cancer at any age and any stage is a terrible thing. But it is especially cruel when it happens to young people–women like Bridget Spence, who at age 29 should have just been getting started in life. There are too many women like Bridget, too many of my friends.

Olga Simkin was 34.

Maria Madden was 37.

Jennifer Lynne Strutzel Berg was 37.

Susan Niebur was 39.

Samantha Pritchett was 40.

Dana Robinson was 41.

Rachel Cheetham Moro was 42.

Zoh Vivian Murphy was 45.

Suzanne Hebert was 47.

Martha Rall was 49.

I have to repeat Shirley’s question. How many thousands more of us must die?

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33 Responses to A Wake Up Call for Young People With Metastatic Breast Cancer…And All of Us

  1. katherinembc says:

    Reblogged this on ihatebreastcancer and commented:
    Cancer at any age and any stage is a terrible thing. But it is especially cruel when it happens to young people–women like Bridget Spence, who at age 29 should have just been getting started in life. There are too many women like Bridget, too many of my friends.

  2. I was diagnosed at 34, when my daughter was 15 months old…then stage IV dx at 38 just after losing a pregnancy. I’m still alive..but barely. I still wish that I would have gone in when I first felt a lump in Nov. 1993, but I thought it was probably a plugged duct because I was nursing and no one in my family ever had cancer…of any sort. I am in my second bout of serious bone mets, and although I’m grateful for the 12 years NED I had…since my daughter is now in her second year of college, I’d like to see her graduate. That is looking less and less likely,.

    I railed at doctors who said “if you have it in your family, you have to be more diligent.” I pointed out that they KNEW they were at risk. It was the rest of us who had no history who had to be informed. The would look at be blankly.

    I applaud Washington Univ. in St. Louis which is doing extensive research on young women with breast cancer, and I have done what I could to participate. But this still seems like so little.

    I don’t know what is worse….being diagnosed when I was young, or being stage IV and feeling like so little is being done to recognize us or provide treatment. In both cases, I am out of the “norm.” No pink ribbons for me….and I’m rather much beyond the casserole stage.

  3. Nicole says:

    What a fantastic article, and it rings so true. Thanks for trying to get the word out about us! I have MBC from age 42, and also feel like my disease is marginalized and sidelined because nobody cares enough to invest in it.
    I love the way you write, thank you.

  4. Diane Blair says:

    My daughter Jessie was diagnosed with Inflammatory Breast Cancer when she was 23. She found a small lump in her right breast and immediately went and had a mammogram. They said it was a cyst. There was a outer shell on it that they weren’t sure about, though. Within a few months, her breast had more than doubled in size and was an angry red and was itchy. We went in to have the cyst drained and they did a biopsy at the same time even though they were convinced that it was not cancer. They were wrong. The outer shell was the cancer. IBC grows in flat sheets in the breast which makes it harder to find. If she hadn’t had the cyst, how much longer would it have been before we found the cancer?

    She and I moved to Houston, about 5 hours from home, and began treatment at MD Anderson. She went through chemotherapy, a mastectomy of the right breast and followed up with radiation therapy. She was declared cancer-free in October 2011, almost a year since her diagnosis. She was scheduled for reconstructive surgery in July 2012, so we went back to Houston for more scans and pre-op appointments. Surgery was cancelled. Her cancer had spread to the lymph nodes in her chest and in her lungs.

    We are now on our fourth type of chemo. It’s difficult to find a chemo that works and they only work for a little while because the cells clone and become resistant to treatment.

    As someone who has watched this process from the beginning with her, I feel like her treatment that first year was aggressive and we were given hope and we saw great results, but since it has returned I don’t feel the same. It feels like she is just being maintained. I don’t want my daughter “maintained”. I want my daughter to live to see her children grow up. My daughter, along with all the many others on this same journey, is Worthy!

    I just wanted to share this morning, so thank you for allowing me to do that.

    Diane

    • Nancy E says:

      I am interested that your daughter’s mastectomy was cancelled after it was determined that her cancer had metastasized. I was diagnosed with MBC 7 years ago. It was my initial diagnosis. I insisted on a mastectomy. The first surgeon I talked with said to skip it and concentrate on what little life was left. My Oncologist was FURIOUS with him. The next surgeon I saw did the surgery and reconstruction and it is gorgeous. My oncologist said that while there are no studies showing benefits for mastectomy at Stage 4, her experience shows better life expectancy among those who had one and her gut feeling is that it helps.

      Just wanted to sahre this back with you. Best wishes, Nancy

      • Colleen Logan Hofmeister says:

        I was diagnosed with Stage IV breast cancer at the age of 44. I was told I was treatable but not curable. That was six years ago. There’ve been plenty of ups and downs, but I am still here. My docs told me I didn’t need to bother with a mastectomy as the “horses were already out of the barn” (extensive lymph node and bone metastises). The initial mass in the breast is no longer there–I’ve just gotta get rid of these other areas of involvement and all will be good. Each day is a gift and a blessing!

      • MBCNbuzz says:

        To Nancy’s comment…While a mastectomy isn’t standard of care for people presenting with MBC, retrospective data has indicated it might be beneficial in certain cases. Prospective data (real time data vs looking back at charts) is now being accumulated.
        Inflammatory breast cancer treatment is different than other breast cancers: http://www.ibcsupport.org/treatment.html.
        Patients should understand the rationale behind their treatment decisions and works with a supportive medical team.
        Thanks for taking the time to comment!

        —Katherine for MBCNBuzz

      • Diane Blair says:

        She’s had a mastectomy on the right side, but the surgery they cancelled was for her reconstruction. Surgery has not been set at this point for her other mastectomy, though.

    • Diane Blair says:

      I just want to let everyone know that my daughter Jessie lost her battle with IBC in July. We found out in May that her cancer had spread from her lungs to her brain. The next day we started radiation to her whole brain and that went for three weeks. We could not do chemo at the same time because of severe reactions and the chemo she had been on prior to radiation wasn’t working, either. I think she was on her fifth or sixth type of chemo and they just couldn’t find one that would work for more than two cycles. Apparently triple negative cancer is one of the more resistant types of breast cancer. She was not ready to quit, though, (and neither was I) so we kept up with treatment. During the nine weeks that she was either not able to be on chemo or not reacting to chemo, the cancer in her lungs spread dramatically. We thought we had about a year together and were making plans to go travel and knock some things off of her bucket list, but we only had about a month before she passed away. She kept her sense of humor through all of her journey. One of the biggest things for her was that women would do self-exams and get their mammograms. Early detection is key!! Please don’t put it off until later to do it…later may be too late!

      Diane Blair

      • MBCNbuzz says:

        Diane
        I am sorry to hear your daughter’s story. She sounds like she would have been an inspirational person to know. Unfortunately, IBC is one of the cancers that often doesn’t show up on a mammogram and is often misdiagnosed if it presents first as a rash. More research is needed and fortunately it seems like attention is finally being given to Inflammatory Breast Cancer as well as Triple negative. An uphill battle, but much potential for improvement. I’m sorry there was nothing left for your daughter to try and I wish you peace and comfort.
        Sincerely,
        Ginny

  5. katherinembc says:

    Hi Diane
    I am sorry you and your daughter are going through this. My mom was dx’d with IBC. She was 51–I am sorry your daughter is dealing with this in her 20s.
    There are several patient advocate groups for people with IBC…see http://www.ibcsupport.org/resources.html there is also an active Facebook group: http://www.facebook.com/talkibc
    FYI, the annual Metastatic Breast Cancer Network Conference will be in Houston at MDA on Sept. 21, 2013.
    Thank you so much for your sharing your daughter’s story. Take care.

  6. Colleen Hofmeister says:

    Hi There~ I’m one of those lower percentage gals who was diagnosed initially AT Stage IV at the age of 44. I went for annual mammograms and sonograms–so much for early detection. I, too, have lost FAR too many young (and those who were young at heart) friends to this disgusting disease. I agree, if homosexual males were able to get the world to wake up and determine their plight was unacceptable, why are WE having such a tough time? I, for one, don’t think the pink fluffy walks and stories of survival and victory help us one stinkin’ bit.

    ~Colleen

    • HIV got attention not because homosexuals pushed the issue (although they did), but more because heterosexual males were potentially at risk. And still, in 2013, the world and the U.S. are controlled by white, heterosexual males. If this were prostate cancer, there would be a cure. And the number of men who get breast cancer is not big enough to make a difference yet.

  7. [...] A Wake Up Call for Young People With Metastatic Breast Cancer…And All of Us. [...]

  8. katherinembc says:

    I should also include Meredith Israel Thomas, who died at age 39 in December 2012. I did not know Meredith, but I appreciated her honesty as she shared her story: http://www.hollywoodreporter.com/news/meredith-israel-thomas-rca-records-406297

  9. Mags says:

    Hi

    I have been diagnosed with breast cancer when my son was 8 months old. Just after breastfeeding I felt the lump.
    They say the pregnancy is not responsible for my cancer but that it made the tumour go bigger faster.
    Going to some support groups in Sydney for young women with BC (under 45), I realise we are a lot and most of the women are young mum…
    It is pretty scary.
    To rise awareness of BC for younger women, I decided to share my story by drawing it – http://magsblog.com

    Thank you for your very interesting article.
    Mag

  10. Tammy says:

    I was diagnosed at 39. I really didn’t know much about breast cancer when I was told I was stage IV. I was shocked to hear I was only “treatable”. My first thought was where is all this “pink” campaign money going and why is stage IV only ” treatable”! I want to live! It’s frustrating!

  11. katherinembc says:

    Chicagoan Carrie Kenney died at age 35:
    “In February 2004, Carrie Kenney lost her seven-year battle with breast cancer at the age of 35. One year later, her cousin, Jodi Fyfe gathered a group of close friends and colleagues to start Tickled Pink Chicago in honor of Carrie…”

    http://www.tickledpinkchicago.com/event/about.php

  12. [...] we do so much but we can’t fix this? I ask.  How is that possible.   I read a quote from an article by Katherine O’Brien — secretary and PR chair of the Metastatic Breast Cancer Network. [...]

  13. Ed Croom says:

    Very little has changed in the almost 20 years since my aunt turned yellow from the breast cancer in her liver because stage IV is hard to study. Even though over 20,000 U.S.women are expected to die with liver metasizing breast cancer each year there currently is no source to get breast cancer liver metastases samples from as few as 40 ER+patients. If livers were as easy to remove as lymph nodes we would know as much about stage IV as we do stage III. Unfortunately spines, lungs, livers and brains cannot be removed by surgery. The only time these tumors can be safely collected is after death. Researchers need more tumor donations after death to understand and eventually cure stage IV breast cancer. Johns Hopkins had a program to collect these tumors at autopsy. http://nursing.advanceweb.com/Article/Rapid-Autopsy-Program.aspx
    They are trying to get it started again. Tumor collection after death (TCAD) is difficult but necessary to understand treatment resistance and metastasis. That is why my mom and I consented to have her lung metastasizing uterine leiomyosarcoma collected after she died. We can cure what we study, but we can only study what we collect.

  14. katherinembc says:

    Sarah Merchant presented with metastatic breast cancer at age 28. She blogs here: http://www.insertboobshere.com/about/

  15. Katherine, please also include the IBC Network Foundation (www.http://www.theibcnetwork.org/). Their founder, Terry Arnold, is working day and night to try and raise money for RESEARCH into the treatment for IBC. As a Stage IV IBC’er (as many are), I applaud her efforts to actually fund research instead of just “awareness”. Thanks for a great article

  16. […] risk for breast cancer, probably because of the unopposed flow of estrogen. I didn’t realize HAVING children increases a woman’s risk for breast cancer for about 10 years after giving bir… I would be willing to bet many women’s doctors either don’t know this or assume that […]

  17. […] risk for breast cancer, probably because of the unopposed flow of estrogen. I didn’t realize HAVING children increases a woman’s risk for breast cancer for about 10 years after giving birth. I would be willing to bet many women’s doctors either don’t know this or assume that this is a […]

  18. Kay Kauffman says:

    It’s been 20 years this fall since I lost my mother to breast cancer. She was 31; she’d been diagnosed at Stage III the year before (I think it was close to Stage IV; at any rate, it was advanced). There is much more awareness of breast cancer now, but as far as I know, long-term survival rates haven’t actually increased all that much. There is something seriously wrong with that – all the awareness in the world won’t help if we don’t find a cure for this terrible disease.

  19. […] HIV-AIDS–where patients can now live for 20-30 years with treatment after their diagnosis,” says Shirley Mertz, President of MBCN. “If gay men, who were then scorned by society in the 1980s, could demand and receive focused […]

  20. […] one risk—probably because of the unopposed flow of estrogen. Fewer people know, however, that a woman’s risk for breast cancer increases after giving birth—for about 10 years. We don’t know why this is the case—researchers theorize it has to do with hormonal spikes that […]

  21. ken w. says:

    First let me start by telling you who I am and my purpose for being here. My name is kenneth walter and i am the husband of cheryl walter, “who is the one that I am here for”. Cheryl was diagnosed with stage 4 met. Breast cancer a little over a year ago. Ever since its been hard and life hasnt been fair, especially to my wife. Just a month before her diagnoses her father had passed away of lung desease. Two months after her diagnoses her mother was told she has alzimers. The only 2 people that she was close to other than my self. This a lot for one person to take but Cheryl is a strong, kind and beautiful woman. She tries to stay positive even though she has been through counless surgeries, most recent hip replacement. She also had double mac. and elboy and pelvis surgery. All this in 13 months, to top things off she has an autistic child that she has to care for. Its amazing that someone can endure so much in so little time and not just throw in the towel. Especially her, because through it all she has had no support. None, not even a phone call to see how she’s doing. I have been her only support through it all and I do me myself and I, and I will continue to love and support her. I’m am just frustrated that mine and her family don’t care. My family don’t even ask about her when I see them. Hek they don’t even ask how I’m doing and its the same with hers. I tryed reaching thinking maybe someone could show that they care this way she feels like she’s loved but instead they seemed to make jokes about it. Same with freinds haven’t seen one in 6 or seven months and when you do hear from them they want something. What kind of world did we chose, I wish she had more of everything in this world and feel if it wasn’t for meeting me things would be different for her. Not that I would tell her that. I tryed opening up a fundraiser giveforward.com about 8 or 9 months ago but that went 90 days without helping. Not that I blame the site, I blame our so called families. They could make her feel wanted,or needed in this lonely world. I did open another fundraiser giveforward.com /met. Breast cancer under cheryls name but still nothin even though I went to family members and asked. It makes me angry that I can’t seem to find someone who cares. I know she is strong but it has to be tearing her apart when its just me and her 24 7 without no one else seeming to care. I’m sorry I don’t mean to come here to complain but I need some advice on how to get a fundraiser off the ground without family or close friends being the ones who have to help. Thank you for listening and may you all live with happiness and great love. Email me at kenroeshouse@ gmail.com if you have any advice and or kind words for my wonderful wife cheryl.

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