Tag Archives: metastatic breast cancer conference

What have we learned about Metastatic Breast Cancer, Charlie Brown?

Did-You-Know-Logo-SmallI am coming up on my fifth year of living with metastatic breast cancer. I am fortunate–I started with a low volume of bone mets and five years later my disease has remained fairly indolent. Not everyone is so lucky–and believe me, it is only luck. It isn’t like I tried harder or did anything special–I was just “lucky” enough to have a “kind” of breast cancer (ER/PR+; HER2-) and bone-only disease that has been fairly low key. I try not to take this for granted.

As I think back to what I knew about breast cancer in 2009, I am embarrassed. I really didn’t know anything. I remember puzzling out the facts of my case–as though I was in high school muddling through my Spanish homework–constantly stopping to look up words  and rereading everything. N0w I like to think I have a basic fluency in breast cancer, but I also realize there is so much I don’t know.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire. I think I have calmed down a little bit. I hope I have become more focused.

Prior to my own diagnosis, I thought of breast cancer as one disease. I didn’t realize that the absence or presence of cell receptors--as determined by one’s pathology report–guide treatment as does HER2 status. (“The  tissue is the issue,” as my friend Marnie says.) Tumor characteristics ultimately determine what “kind” of breast cancer one has.

Most breast cancer can be categorized as follows:

  • ER/PR+; HER2- (accounts for 65% of breast cancer cases)
  • ER/PR+; HER2+ (accounts for 20%  of breast cancer cases)
  • ER/PR-; HER2-. (accounts for 15%  of breast cancer cases)

Update: A couple of readers with ER-/PR+ breast cancer noted that the above is a bit of an oversimplification.  Here is a further breakdown courtesy of BreastCancer.org :

  • ER+: About 80% of breast cancers are estrogen-receptor positive.
  • ER+/PR+: About 65% of estrogen-receptor-positive breast cancers are also progesterone-receptor-positive. This means that the cells have receptors for both hormones, which could be supporting the growth of the breast cancer.
  • ER+/PR-: About 13% of breast cancers are estrogen-receptor-positive and progesterone-receptor-negative. This means that estrogen, but not progesterone, may be supporting the growth and spread of the cancer cells.
  • ER-/PR+: About 2% of breast cancers are estrogen-receptor-negative and progesterone-receptor-positive. This means that the hormone progesterone is likely to support the growth of this cancer. Only a small number of breast cancers test negative for estrogen receptors but positive for progesterone receptors.
  • ER-/PR-: If the breast cancer cells do not have receptors for either hormone, the cancer is considered estrogen-receptor-negative and progesterone-receptor-negative (or “hormone-receptor-negative”). About 25% of breast cancers fit into this category.
  • HER2+: In about 25% of breast cancers,the HER2 gene doesn’t work correctly and makes too many copies of itself ( HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression).

Also: If you are reading scientific papers, it’s helpful to know that researchers typically  divide breast cancer into four major molecular subtypes: Luminal A, Luminal B,  Triple negative/basal-like and HER2 type. Read a detailed explanation here.

Inflammatory breast cancer (IBC), the kind my mom had, refers to an unusual presentation–there’s no lump, the disease is generally found at Stage 3 or Stage 4. In general, IBC is first treated with chemo, followed by surgery and then radiation. Hormone receptor and HER2 status guides treatment–someone with IBC could have ER/PR+ HER2- breast cancer, for example.

I knew invasive ductal carcinoma (IDC)  (starts in ducts)  and is the most prevalent kind–it accounts for 50 to 75% of all invasive breast cancers. Invasive lobular carcinoma (ILC) (starts in milk glands, aka lobules)  is the next most common type, making up about 10 to 15% of all invasive breast cancers.  ILC generally does not have “lumps” like you’d find with IDC. Instead, ILC grows as sheets of cancerous cells–therefore it is harder to find via mammograms or self exam. With ILC, for any given stage or grade, the prognosis is similar to that of IDC. The pattern of metastases is slightly different vs. IDC–lobular carcinoma can metastasize to unusual sites, including the gastrointestinal tract, peritoneum, and adnexa (refers to uterus/ovary).  Invasive lobular carcinoma is more likely to occur in both breasts compared with other types of breast cancer. ILC tends to occur later in life than IDC — the early 60s as opposed to the mid- to late 50s.

I knew that breast cancer had stages and that Stage 4 wasn’t good. I didn’t realize that no one dies from early stage breast cancer–but that 20 to 30 percent of those with early stage breast cancer will go on to have a metastatic recurrence.

I did not know that a de novo presentation–someone who is metastatic from first diagnosis, is the exception rather than the rule. About 90% of those with metastatic breast cancer were previously treated for breast cancer; only 10% of us are metastatic from the start.

I did not realize that our US cancer registry does NOT track breast cancer recurrence–even though that is how most people join the metastatic breast cancer ranks. The NCI and SEER databases record only incidence, initial treatment and mortality data.  What happens in between — in terms of recurrence and the exact number of people living with metastatic breast cancer — is undocumented. As Musa Mayer says, ““It is as if these metastatic [people]  are invisible, that they literally don’t count. And when we don’t count people’s needs, we can’t provide or plan for them.”

I did not know breast cancer could spread to your bones, liver, lungs or brain. I knew it was bad if it spread beyond your lymph nodes.

I did not know that having the “worst” kind of breast cancer doesn’t necessarily mean you will have chemo right away. I assumed ALL cancer patients had chemo.  In my case, I will not have chemo until all of  the less toxic options have been tried first. This is both because of my cancer’s characteristics ( ER/PR+; HER2-);  and because my cancer remains under good control. Someone with triple-negative breast cancer can’t use  the anti-hormonal drugs (Tamoxfin; Femara, etc) that I do–their cancer would not respond (because it lack the necessary cell recpeptors).

I did not know having metastatic breast cancer means you are a patient for life. Or that the average patient may receive eight or 10 different treatment regimens in sequence. When one drug fails, you move on to the next one. Most people with MBC see their oncologist every month. If  the cancer is under good control, these appointments might be less frequent. But for most it is at least a monthly visit.

I did not know every three or four months I would have scans to see how well or  if my treatment was working. This is anxiety provoking and hard to understand if you have never experienced it.

I didn’t know my scan results could be categorized as No Evidence of Disease (NED), Stable (nothing got bigger or smaller, everything stayed the same); or Progression. I have never been NED but I have been stable, which is good, too.

I did not know that in some cases, people can live with metastatic breast cancer for a long time. I assumed everyone with metastatic breast cancer immediately got really sick and soon succumbed to the disease. While that does happen to some people, it is not universally true. Prognosis depends on many factors, including disease subtype and tempo.

I knew that not having children increases one’s 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 rare occurrence.

I assumed that being diagnosed with metastatic breast cancer at age 43 put me on the younger end of the MBC spectrum. I have sadly discovered this is not the case. I have met women in their 20s with metastatic breast cancer. While it is true that breast cancer is a disease of aging, I think members of the general public would be shocked to hear from some of these young people. Anecdotally, my experience is that there quite a few young women with MBC–too many, in any case.

I did not know that although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

I knew that men could get breast cancer but I  assumed this hardly ever happened. I have met (in person and online) at least five men with metastatic breast cancer. I am pretty sure these men and their families take scant comfort in the “rare” categorization.

I assumed that if one needed financial aid, one could merely call upon one of  the well-known cancer associations or national breast cancer groups. (Let me stress I am fortunate that I have not had to seek financial aid, but I know many who have.) I have learned that few national groups disburse funds. Typically one has to get help  from a local chapter or affiliate or community group and once those funds are gone for the year that’s it. I have learned most aid is fairly modest–getting help will require applying to many different sources.

I did not realize how poorly funded ALL metastatic cancer research is.

I did not know that a  drug that PREVENTS metastasis may not SHRINK a large, refractory tumor. It has a different mechanism of action that is NOT picked up by the clinical trial system. I did not realize some of our best metastatic researchers are advocating for a new approach to clinical trials.

I did not realize that most Breast Cancer Awareness Month coverage focuses almost exclusively on those with early stage disease. People are either afraid of our reality or prefer to ignore it in favor of  “feel-good” stories. Of course, we’ve also seen the other extreme–someone assuming ALL people living with MBC are on their deathbeds, which isn’t necessarily true either.

I did not know the  incidence of stage IV breast cancer—the cancer that is lethal—has stayed about the same; screening and improved treatment has not changed this.

I did not know breast cancer kills 40,000 annually in the US and half a million worldwide. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally.

Most of all, I did not know that there was so much that I did not know!

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Register NOW for the Metastatic Breast Cancer Conference

Hopefully you’ve registered already for the conference! There’s still time to sign up but we are really coming down to the wire for scholarship applications and our hotel block. SIGN UP TODAY!!!

We are working very hard to bring you an excellent conference! So much to do, so little time! But it will totally be worth it to see all of you. Join us!

The Metastatic Breast Cancer Network’s (MBCN’s)

2013 Annual Conference In Conjunction with MD Anderson

WHO: People living with metastatic breast cancer and their spouses, partners, friends and caregivers.

WHEN: September 20-22, 2013.

WHERE: Houston Marriott @ Texas Medical Center.


Additional Useful Links:
The agenda is here: http://mbcn.org/special-events/category/agenda-2013

You can register here

Apply for a scholarship here (MUST complete registration first.)*

Register for a room here*

*We are practically at the deadline!!! Apply NOW!!


Scenes from our 2012 Conference

Scenes from our 2012 Conference

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Emens’ immunotherapy update & more MBC Conference Highlights

“Empowerment Through Education” is the theme of this year’s MBCN National Conference at Johns Hopkins (Baltimore). The free conference kicks off with a reception on Oct. 28 and full-day session on Oct. 29.

Johns Hopkins University medical and research experts will speak on the latest treatments and promising research for metastatic breast cancer. Some scholarships are available to defray travel and lodging costs.

Family, friends, caregivers, etc. are welcome.

Prior to attending last year’s conference in Indianapolis, I had only met two other people with mets and only in passing. It was really great to be around people who “get it.”

And what a great opportunity to hear from Dr. Leisha Emens–one of the leading breast cancer researchers. Dr. Emens is currently testing a vaccine composed of breast cancer cells genetically modified to secrete the immune-stimulating hormone granulocyte-macrophage colony-stimulating factor (GM-CSF).

These breast cancer cells can incite an immune response to HER-2/neu, as well as many other breast tumor antigens. GM-CSF delivered in close proximity to the vaccinating breast tumor cells breaks the ignorance of the immune system for breast cancer, re-educating it to recognize breast cancer cells as dangerous and destroy them. (Darby Steadman of Driving Miss Darby is a patient of Dr. Emens.)

Also looking forward to hearing from Lillie Shockney, Administrative Director of Johns Hopkins Avon Foundation Breast Center. Lillie is the c0-author of 100 Questions & Answers About Advanced and Metastatic Breast Cancer. This book was a huge help to me when I was first diagnosed. I am pretty sure I asked my oncologist all 100 questions. Very concise and easy to understand–it was just what I needed.

Hope to meet many of you at the conference. You can get more info here:


Agenda for 2011 Metastatic Breast Cancer Network National Conference (“Empowerment through Education”)

Johns Hopkins Avon Foundation Breast Center

Baltimore, Maryland

October 29, 2011



Registration and Continental Breakfast



Michele Przypyszny, President of Metastatic Breast Cancer Network

Lillie Shockney, R.N., B.S., M.A.S., Administrative Director of Johns Hopkins Avon Foundation Breast Center


Breakout Session I: Understanding Metastatic Breast Cancer: Biology, Treatment, Monitoring

A discussion of MBC biology, diagnosis, current treatment, long term strategy, tests and monitoring. The session is divided into two groups based on your knowledge and familiarity with the disease

(choose A or B)

A: MBC 101- Become Informed

Robert S. Miller, M.D.

Associate Professor of Oncology, JHU

Geared toward newly diagnosed or those attending their first conference who would benefit from a comprehensive, basic introduction

B: MBC 201- Broaden Your Knowledge

Carolyn Hendricks, M.D.

Oncologist in Private Practice in Bethesda, MD

For those who have been living with mbc for a while and have attended other metastatic conferences.


Ask the Experts:

Carolyn Hendricks, M.D. Robert Miller, M.D. Richard Zellars, M.D.

Three oncologists answer your questions




Breakout Session II: (choose one)

* C: Bone Metastases
o Richard Zellars, M.D.
o Associate Professor of Radiation Oncology and Molecular Radiation Sciences
o Associate Professor of Oncology, JHU
o Discussion of bone mets including treatment, role of radiation, pain management, skeletal events, zolendronic acid vs. denosumab, role of vitamin D3, magnesium and calcium.

* D: Role of Surgery in Soft Tissue Metastases
o Kenzo Hirose, M.D.
o Assistant Professor of Surgery, JHU
o Risks vs. benefits of surgery for soft tissue mets; role of radio frequency ablation in treatment of liver mets and surgical approaches for lung and brain mets.

* E: Managing Side Effects of Treatment
o Carol Riley, R.N., M.S.N., C.R.N.P.
o Nelli Zafman, C.R.N.P.
o Nurse Practitioners at the Avon Foundation Breast Center at JHU
o How to deal with nausea, insomnia, menopause, fatigue, neuropathy, hair loss and other side effects.





Leisha Emens, M.D., Ph.D

Associate Professor of Oncology, JHU

Discussion of the immune system and the role of immunotherapy in the treatment of mbc. Dr. Emens will share a progress report of her clinical trials to enhance the immune system of mbc patients through vaccination.


Breakout Session III: (choose one)

* F: Role of the Caregiver
o Lynn Billing, BSN, CHPN
o Nurse Co-ordinator, Kimmel Cancer Center, JHU
o Discussion of issues and coping strategies for the caregiver: support, decision-making, stress, family and friends.

* G: Nutrition and Wellness
o Linda Lee, M.D.
o Assistant Professor of Medicine, JHU
Director, Johns Hopkins Integrative Medicine & Digestive Center
Clinical Director, Division of Gastroenterology and Hepatology
o Explore issues such as effect of weight loss, low fat and low sugar diet, dietary supplements, vitamins and stress relievers such as yoga, exercise and journaling.

* H: Living with MBC
o Joani Gudeman LCSW, PsyD, Moderator
o A panel of metastatic women will share their strategies for dealing with anxiety and uncertainty; moderated by an experienced psychotherapist who has been living with mbc since 2008. There will be time for questions.

* I: How to Navigate Social Security Disability: A Patient’s Perspective
o CJ (Dian) Corneliussen-James
o Co-Founder/President of METAVivor Research and Support, Inc.
o Did you know that most women and men with metastatic breast cancer qualify for Social Security Disability and can obtain benefits fairly quickly? Ask questions and learn more about the process from a fellow patient who has experience helping others navigate the SSDI system.




Clinical Trials vs. Standard of Care

Tatiana M. Prowell, M.D.

Instructor of Oncology, Part-time Medical Oncology Faculty, JHU

An examination of clinical trials vs standard of care; risks and benefits of these approaches; what to ask your doctor; how to find and select a clinical trial; rules of qualification; and impact of prior treatments on acceptance. A list of trials at Johns Hopkins will be shared.


Cutting Edge Research

Stephen Baylin, M.D.

Deputy Director, The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
Virginia and D.K. Ludwig Professor for Cancer Research
Professor of Oncology and Medicine, JHU

Hear about the latest innovative research including mapping the genome, epigenetics, stem cells, and the future of personalized therapy.


Closing Remarks

Lillie Shockney, R.N., B.S., M.A.S., Administrative Director of Johns Hopkins Avon Foundation Breast Center

Michele Przypyszny, President of Metastatic Breast Cancer Network



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