Breast Cancer
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Featured on Breast Cancer Tab … New report on tamoxifen
Breast reconstruction
Reaching out to Triple Negative survivors
Pink-link connects survivors |
| Mom with a torch helps survivors |
| New study results on antioxidants during chemo |
| New on Vitamin D |
| Restorative yoga for lymphedema and anxiety |
| PARP inhibitors and Triple Negative Breast Cancer |
| Foods may stunt estrogen-positive breast cancer |
| The soy and breast cancer debate |
| and more … |
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Answers and virtual hugs for
breast and ovarian survivors
From the moment you hear “You have cancer,” you are baptized by fire. You typically have to get lots of information fast, then move on it. An organization called SHARE helps breast and ovarian cancer patients expedite their learning curve. SHARE helps the newly diagnosed but is there for women for as long as they need support.
How it works
You’re connected with a volunteer who has been down the same path; these women are breast and ovarian cancer survivors themselves. While they don’t give medical advice, they answer questions like “How can I prepare for mastectomy?” and “What does radiation feel like?”
Volunteers lead you to additional information and resources and support you emotionally, easing your fears. You can get one-on-one answers from a live voice, or join a larger conversation in private membership, internet-based forums.
Using the helpline
Trained volunteers are on call 12 hours a day, including weekends. You can reach SHARE Helplines at 866-891-2392. You can call anytime or make an appointment to talk by going to the organization’s website sharecancersupport.org
Internet forums
If you want to join a larger conversation, SHARE volunteers are available online at TalkAboutHealth.com, an internet-based support community. Volunteers respond to members’ questions or concerns. Once you join you can also submit questions to practitioners from oncologists to complementary-care professionals by tapping into various forums. Answers are posted for all participants. Here’s where you connect to SHARE through this resource: talkabouthealth.com/static/trained_peer_support_program
You can call the SHARE Helpline from anywhere in the United States, though TalkAboutHealth is worldwide.
In New York, SHARE offers face-to-face support groups designed for specific needs. You’ll find groups for young women; older women; women in the lesbian, bisexual, and gay transgender community; and others. The organization also hosts educational workshops in New York on topics from reconstruction to new breast-cancer treatments.
I talked to a SHARE volunteer, Megan, for answers to questions I thought you might ask yourself. Here’s how the conversation went:
Q: What are benefits of talking by phone? What are drawbacks, and how do you work around them?
A: A benefit of the helpline is that women who find it inconvenient or impossible to travel to our office can get one-on-one support on an unscheduled basis. They call when they have the time and when the need arises. Also if a woman wants to talk to someone with her subtype of breast cancer, we can arrange a “peer match” with another volunteer whose experience mirrors hers.
The drawbacks are mainly that I can’t physically hug her or hand her a tissue or accompany her to an appointment. But I do my best to provide as much comfort and help as I can.
Q. What was one of the most impacting calls you ever received? How did you handle it?
A. My first call was the hardest because I didn’t have much confidence yet; I was concerned that I might do more harm than good. These days, I don’t worry about that. All calls are confidential, so I can’t discuss anyone’s personal details, but in general, I get a little weepy after talking with women who are struggling not only with cancer but other major life issues, like elder care, or a divorce, or problems with their job. If by chance a call is difficult for me, I can hand it off to someone with more experience. For example, since my breast cancer has not metastasized, I usually match women who are in this situation with a volunteer who’s living with advanced cancer. She may be able to help more than I can.
Q. What are some of callers’ most common problems? How do you help?
A. Callers are often upset by the diagnosis, confused by the complicated information they’ve been given, fearful of the treatment, terrified that they’re going to die. Just by being alive, volunteers are really good at dealing with callers’ terror. I think most women feel enormous relief in talking to a woman who’s had cancer and is still alive.
Also, helpline volunteers don’t have the time pressures faced by doctors, and we have acquired a lot of basic knowledge during our own journeys. So we can help process the diagnosis and treatment in a leisurely, well-informed way.
Q. What if women need more than you can give on the phone?
A. We have a database that is constantly updated, so we can make suggestions on where to turn for help with legal issues, insurance, wigs and prostheses, transportation, employment concerns, etc.
Q. Tell me about your cancer diagnosis, experiences getting through it. How does it help you as a volunteer?
A. I was diagnosed at age 55 with an aggressive lobular breast cancer. I underwent bilateral mastectomy, axillary lymph node dissection, chemo, Herceptin, and radiation. I would say I’m a pretty good resource for first-hand experience! Oh, and I spoke with SHARE several times when I was diagnosed, so I know what it’s like to be on the other end of the line.
SHARE’s services are free and confidential.
Financial help for breast cancer survivors
and women at risk
If you are considered high risk for breast cancer or recurrence because you are BRCA positive, or have a family history of breast cancer, you can get help paying for screening breast MRI’s. Magnetic resonance imaging is significantly more accurate at detecting breast cancer than mammograms, especially in women with dense breasts. MRI’s do not emit radiation. The funds for this screening come from Right Action for Women, recently launched by actress Christina Applegate.
Exactly who qualifies?
If your doctor has ordered the MRI because you are considered at increased risk, and you live in the United States, you will be covered. You qualify regardless of age, income, and insurance status. Though how much, if any of the expense your insurance covers will be considered in determining your reimbursement amount. Each case is reviewed individually; you may be helped with the co-pay, all or most of the MRI fee.
Christina launched the program in 2010, after she learned she was BRCA positive, and after she made her belief public that an MRI saved her life. Right Action for Women, administered by Patient Services, Inc. (PSI) began with two pilot projects for women age 45 and younger. As the high demand became obvious, the program expanded its reach to women of all ages, anywhere in the country.
How to apply:
You can apply on-line. Application available at this link: https://www.patientservicesinc.org/onapp/apply.aspx
If you don’t have access to an on-line application, call PSI toll-free at 1-800-366-7741. You will be faxed or mailed a form.
You will need to hand in support documentation; find details by calling PSI.
Fax:
804-744-5407
Postal address:
PSI
PO Box 5930
Midlothian,VA23112
What else you need to know:
All of your information will be kept confidential. You will know if your application has been approved within ten business days.
More information:
Right Action for Women (funding source) www.rightactionforwomen.org
New finding in Triple Negative breast cancer
A common denominator has been identified in Triple Negative breast cancer patients—one scientists believe may make combinations of drugs already on the market work well for these women.
Researchers at Baylor College of Medicine in Houston, TX, found that an enzyme called tyrosine phosphatase (PTPN12) did not function in 60 percent of nearly 200 human Triple Negative breast cancer samples. PTPN12 helps keep cell-growth pathways behaving as they should, thus preventing formation and spread of malignancies.
In looking further at this malfunctioning enzyme, researchers identified three more enzymes that become active in the absence of PTPN12. The enzymes are EGFR, HER2, and PDGFR-b.
What are kinases and what is their role in Triple Negative Breast Cancer?
“Some families of genes are called kinase, and kinase is the only thing we know how to inhibit to treat genetically driven cancers at this time,” says Thomas Westbrook, PhD, the lead investigator on the Baylor study on PTNP12 and Triple Negative breast cancer.
“With some breast cancers, we have been able to develop targeted drugs that have been successful by inhibiting just one kinase. For example, with HER2 positive breast cancer, we identified one gene that’s gone bad. HER2 is the driver gene making cells behave like cancer cells, and herceptin has done fairly well to inhibit this driver.
“But Triple Negative breast cancer is more complicated. It is characterized by hundreds of genetic mutations. By identifying three kinases that power this disease we believe we are on our way to making medical breakthroughs in developing targeted treatments similar to tamoxifen for estrogen-positive breast cancer and herceptin for HER2-positive breast cancer,” says Dr. Westbrook.
What drugs may inhibit kinase associated with Triple Negative?
In early studies on mice, lapatinib (Tykerb) is turning off EGFR and HER2. Sunitinib (Sutent) is turning off PDGFR-b.
In mice treated with sunitinib alone, tumors shrank by nearly 80 percent. But when sunitnib and lapatinib were combined, tumors shrank by more than 90 percent.
“Six months out, most of the animals still have significantly regressed tumors that continue to get smaller.
We still have hurdles to get the same response in humans, including ensuring the safety of these drugs in combination. But scientists and clinicians are very enthusiastic, and drug companies by definition are pretty hesitant, but are willing to partner with us. The community’s reaction speaks to that there is promise here. My hope is to have phase 1 and phase 2 trials in place in 2012,” says Dr. Westbrook.
The trial will be open to late stage triple negative patients who want to try a new treatment.
Less radiation for early stage breast cancer survivors
Most of us who’ve done radiation after lumpectomy have gone five days a week for six or seven weeks, subjecting our entire breast to treatment, but for women with early stage, and less-aggressive breast cancer, there’s usually an alternative. An alternative where you go in twice a day for five days, then you’re done.
Accelerated partial breast irradiation (APBI), as the procedure is called, is delivered directly to the site where the tumor had been, sparing healthy breast tissue and avoiding damage to the ribs, muscles, lung and heart. Because APBI (also called brachytherapy) is more localized, there is minimal risk of skin discoloration or thickening, and another bonus is less fatigue.
How is the procedure done? And how does it vary from the “traditional” way?
It can be done in the doctor’s office in two, 15- to 20-minute sessions that are several hours apart from each other. The surgeon places a catheter (tube) under ultrasound guidance, into the breast. A tiny radioactive seed is placed into the catheter, enabling very precise, targeted delivery—much more so than with the standard technique called external beam therapy. The traditional procedure gets the job done too, but because the entire breast is receiving radiation, treatments are done over a longer period, to spare skin as much as possible.
Deanna Attai, MD, is a breast surgeon who has performed APBI since 2002. She uses a catheter called SAVI, because it comes in multiple sizes, which she says allows her more flexibility.
“I find I can better tailor radiation therapy with this technique, especially with this particular device. The SAVI has a unique design that allows me to deliver treatment even in small-breasted women, or to reach challenging places when need be, such as the inner breast closer to the sternum,” she says.
What’s the comfort level, and will it leave permanent marks?
The catheter is initially inserted under local anesthesia, and the most you will feel is a little pressure at that time. There will be a tiny scar—about a 1/4 inch—left at the site where the catheter enters the skin
Is delivering higher doses safe, and what do we know to be sold on that long-term outcome will be at least as good?
There are multiple, long-term studies demonstrating the safety of brachytherapy (internal, catheter-based radiation) for breast cancer. The toxicity was reported as low, and the cosmetic results comparable to with external beam therapy. And multiple studies show 2.9 percent to 5 percent local recurrence at five years, comparable to whole breast radiation. (Radiation Oncology 2010, 5-90).
Something that puts doctors at ease is that more women appear to be having recommended radiation who may otherwise have forgone it.
“In some areas of the country, it is not uncommon for women to have to travel over 100 miles for therapy. There are studies demonstrating that the further a woman lives from a treatment center, the more likely she will forgo radiation altogether if she has a lumpectomy, putting her at increased risk for cancer recurrence,” says Dr. Attai.
Many of these women living in remote places will undergo mastectomy to avoid this challenge. Now they have another option. But other women have opted for this alternative treatment for reasons of their own.
“Partial breast irradiation is at this time exclusively for people with early stage breast cancer. Women who are usually otherwise healthy, who often work full-time, while caring for their families, and while trying to live a normal life through breast cancer. Completing what is the last stretch of treatment for most of them in just five days takes some of that stress off,” says Dr. Attai.
More information on APBI:
www.aboutbrachytherapy.com/en-us/health/cancers/breast-cancer/Pages/safety.aspx
www.ciannamedical.com/about_savi/newsletter/0409.htm
New report on tamoxifen
Most women with estrogen-positive breast cancer who take tamoxifin (brand name: Nolvadex) benefit for at least 10 years after they stop taking it, according to a newly released study. In fact, the findings suggest that five years of daily tamoxifen reduces the long-term chances of dying from breast cancer by at least a third (The Lancet).
The Early Breast Cancer Trialists’ Collaborative Group (EBCTCG) studied 20,000 women with early stage estrogen-positive breast cancer from around the world. The 20 trials on women who took the drug vs those who didn’t, found that tamoxifen staves off recurrence and boosts long-term survival for 15 years.
The 30-plus-year-old drug was effective even without chemotherapy. Also of significance, researchers report, the occasional life-threatening side effects are much less common in women under age 55—a group that makes up 50 percent of breast cancer survivors.
Who’s a candidate for tamoxifen?
It is used in both early stage and metastatic breast cancer. Sometimes this hormone therapy is used in women at risk for cancer and women with ductal carcinoma in situ (DCIS), a noninvasive condition that could lead to invasive breast cancer.
How does tamoxifen work?
Estrogen-positive cancers have a protein that estrogen binds to. Tamoxifen works against the effects of estrogen on these cells.
Possible side effects:
The most common side effects are not serious but you should call your doctor if they occur. They include: hot flashes, vaginal dryness, low libido, mood swings and nausea.
Seek medical attention right away for any of the less-common, severe side effects. And before you read this list, relax and know they are RARE. They can occur for reasons other than a drug reaction. And each woman is different, so risk varies, which is another reason to talk to your doctor to determine if you are in the majority for whom the benefits appear to outweigh risks.
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest, swelling of the mouth, face, lips, or tongue; unexplained hoarseness); abnormal vaginal bleeding; chest pain; dark urine; fever, chills, or persistent sore throat; groin or pelvic pain or pressure; poor balance or coordination; new or increased breast tumor or pain; new or unusual lumps; sudden severe headache; swelling of the arms or legs; vision or speech problems; yellowing of the eyes or skin.
For more information on tamoxifen:
http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen
For more information on the EBCTCG study:
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60756-3/abstract (link to go live late September 2011)
Avastin for advanced breast cancer?
There has been heated debate on whether Avastin (bevacizumab) should remain an option for women with metastatic breast cancer. FDA recently recommended pulling the drug from the market for breast cancer after several studies indicated it does not extend these survivors’ lives and often causes serious side effects, even death in two percent of them. But disappointing as the research is, a silver lining has been found: the drug works in a minority of advanced breast cancer survivors—about 175,000 of them.
Doctors, patients, and other advocates are rallying to salvage FDA approval for survivors now benefiting from Avastin as well as newly diagnosed advanced breast cancer patients who this drug may be the best option for.
FORCE (Facing Our Risk of Cancer Empowered) is among the organizations calling on FDA to keep the drug on the market for people who fall into this category of “Super Responders”. The organization’s stand is based on their findings from a pilot survey among metastatic breast cancer survivors with the BRCA mutation. They are working with researchers at Moffitt Cancer Center to review the data more completely, but what they can say at this point is that all the women who received Avastin reported a positive response.
“Nearly half of those who had taken the drug said their cancer responded and has not progressed. The number with no progression was greater for Avastin than other agents approved for metastatic breast cancer, including Capecitabine. While our survey is preliminary, it suggests that the hereditary cancer community responds well to the drug,“ says Sue Friedman, executive director of FORCE.
The organization is not alone in pushing to salvage Avastin as an option when the treatment appears to work. Thirty of the thirty three doctors, patients, and advocates at a July 2011 FDA hearing told FDA Avastin needs to remain a viable option.
Dr. Robert Burger, from the Fox Chase Cancer Center in Philadelphia has been a clinical investigator on late stage Avastin trials for women with ovarian cancer.
“We are in a new age in oncology where multiple, active regimens exist for diseases like metastatic breast and ovarian cancers. For example, the National Comprehensive Cancer Network has listed Avastin as a preferred regimen, among others, to manage recurrent ovarian cancer. However, without Agency approval, the ability to prescribe this agent is limited, highly variable, and discriminatory,” Dr. Burger told FDA.
Burger went on to say, “Clinical trial data for ovarian cancer are not dissimilar to those for Her-2 negative metastatic breast cancer. Three Phase III clinical trials have demonstrated significant prolongation of progression-free survival with Avastin in the primary and secondary treatment of advanced epithelial ovarian and related malignancies. In some cases, these trials have shown trends for prolongation of overall survival.”
While FDA’s decision is pending on breast cancer, the Centers for Medicare and Medicaid Services (CMS) will continue paying for the drug. And regardless of the forthcoming decision, Avastin will remain available for other cancers including ovarian, lung, colon, kidney, and brain. The way Avastin works is by blocking blood supply to the tumor, ultimately starving it and causing cell death.
Breast reconstruction Part 1: implants
Breast reconstruction is a huge step forward beyond the cancer diagnosis and there are multiple choices to consider. Options range from saline implants to techniques involving human tissue donors that help regenerate your own tissue. You will definitely want to talk to a plastic surgeon about all the possibilities before mastectomy and before beginning any part of your cancer treatment because you may have more options if you coordinate the timing. This is because some procedures can not be performed after radiation.
While you will need to talk to a plastic surgeon and your breast surgeon, for now I’ll answer some of the main questions. This article will explore implants. The next two articles (below) look at TRAM flap and DIEP flap, respectively.
Breast implants with tissue expanders is the most common form of reconstruction, largely because you can chose the size breast you want, regardless of your body type and it is the least invasive.
How is the implant procedure done?
It begins with an expander, which is a balloon-like device made from silicone rubber. After skin and breast tissue are removed, the expander is placed underneath the remaining chest tissue to leave space for the implant. Next saline is added through a port—it’s a saltwater solution much like the fluid naturally flowing through your body. As the saline flows, the tissue stretches over the expander. The fluid is usually inserted slowly, over several weeks. Then, once the skin stabilizes – usually six to twelve weeks after the last infusion – the expander is replaced with a permanent breast implant. This two-step reconstruction process is most common, and is called for if you have very little, or significantly compromised skin left after mastectomy.
What is direct-to-implant reconstruction?
There is a “one-step” approach – known as direct-to-implant post mastectomy reconstruction. This technique allows insertion of a permanent, expandable implant at the time of mastectomy. That’s it—you’re done, no second procedure to replace the expander with an implant. This approach is best for patients with good preservation of the breast skin after mastectomy.
Which are you most likely a candidate for? The one-step or two-step approach?
Here are the determining factors …
You are a candidate for one-step (direct to implant) reconstruction if you:
- Have no available flap options or chose to forgo a flap (flaps involve tissue from other parts of your body)
- Have enough breast skin, which is not compromised after mastectomy
- Have not previously had radiation to the breast or chest wall
- Want bilateral reconstruction (both breasts) for better symmetry
- Are having prophylactic mastectomies
What can you expect with implant reconstruction over living tissue reconstruction?
The breast shape may not be quite as natural, it usually involves several surgeries, and the expanders and implants may move. But there are advantages like a shorter hospital stay and shorter recovery time. You can usually predict the final outcome as far as breast shape, and it’s less invasive.
Read on for information on flap surgeries – where breasts are reconstructed with tissue from the abdomen, and sometimes the back, thighs, or buttocks. And if you would like to do more research on your own on implants, the following are a couple of many good sites on reconstruction where you can begin:
http://www.breastreconstruction.ca/implant.htm#procedure
http://www.breastreconstruction.org/
Forums where you can connect with other women:
http://community.breastcancer.org/forum/44
Preparing for mastectomy:
www.noreenfraserfoundation.org/resources/prepare-for-mastectomy
Breast reconstruction Part 2: TRAM Flap
The TRAM flap is one of the more common forms of breast reconstruction involving use of a woman’s skin rather than implant. It’s a popular option because when done by a highly skilled plastic surgeon, the scarring is fairly minimal; women typically regain most of their muscle tone and strength; and it’s a relatively non complex procedure.
How is the TRAM Flap done?
A portion of skin and fat, as well as muscle that contains blood vessels, are cut from the abdomen. The tissue and vessels are transferred to the chest wall, where the new breast(s) is formed.
What will the breasts look and feel like?
They are actually quite natural looking, with scarring fading and the tissue becoming softer over time. They will feel and move much like the original breast tissue. While with the DIEP flap, vessels are taken from the abdominal muscle and rerouted in the chest; with TRAM, the vessels are left in the abdominal muscle and transferred with the muscle to the chest. So TRAM is less complicated. Some surgeons claim they get better aesthetic results with DIEP, but others say the results are similar.
How is the abdomen affected?
Most women regain good abdominal muscle strength with the TRAM, but how much is regained will depend on what type of activity they were performing before and will be performing after surgery. A plus is that women also end up with a tummy tuck when they are done.
What to expect after surgery
You will not be able to lie on your stomach for two weeks. Within four weeks you should be able to return to most of your activities, though you should not lift anything heavier than about five pounds for six to eight weeks and may not be able to return to work for six to eight weeks.
What about scarring?
With Tram flap, there are two scars: one on the breast and another bikini line incision. But actually, women lose the mastectomy scar because the skin transferred from the abdomen fills in the gap.
Who’s a candidate for TRAM flap?
You are a candidate if:
- You can’t have, or don’t want implant reconstruction
- have enough lower abdominal tissue to form new breasts
- have not had prior abdominal surgery
- have previously had radiation to your chest
- Are not diabetic and don’t have other vascular conditions
The procedure can be done immediately after mastectomy or years later, so you have time to think about if you’d like to go this route.
For more information:
http://www.prma-enhance.com/index.cfm/PageID/1759
http://www.ask-expert.org/pdfs/perspectives18.pdf
Breast reconstruction photo gallery:
http://www.prma-enhance.com/index.cfm/ProcedureNameID/19/PageID/1946
Forums where you can connect with other women:
http://community.breastcancer.org/forum/44
Breast reconstruction Part 3: DIEP flap
The DIEP flap is no simple procedure, because it involves manipulating blood vessels, but it comes with benefits. A fairly small incision on the breast that fades over time, and like the TRAM flap, soft new breasts that look and feel natural.
How it’s done:
An incision is made in the abdominal muscle, the blood vessels are taken from this muscle and rerouted to the chest, where the new breasts are formed. The amount of total tissue taken depends on the size of the new breast, which is typically a B-cup or C-cup. The entire procedure typically takes 4 to 8 hours because of the complexity involved in performing micro vascular surgery (involving rerouting vessels from the abdomen to the chest).
How many procedures will be required to achieve the final outcome?
Women can expect to have a second surgery for nipple reconstruction, which is also the case with TRAM flap. Sometimes this is the last step, though it is not unusual for a third, liposuction-type procedure to be necessary to tweak the shape.
How long before the breasts will look natural? And just what will they look and feel like?
Women will be on their way to achieving the final aesthetic outcome within about three months. But typically it takes at least twelve months of healing to reach the most ultimate outcome possible. Once healing is complete, there will be a slight scar on the newly formed breasts, which should not only look, but should feel very natural.
How is the abdomen affected?
Because no muscle is removed, the abdomen maintains a normal appearance after surgery. Women should regain all of their abdominal muscle strength and eventually be able to return to the same level of fitness and muscle tone. There will be a bikini line scar that fades with time, running approximately hip to hip. A plus is that women also end up with a tummy tuck when they are done.
What to expect after surgery
Most patients are discharged from the hospital within 3 to 5 days, usually with several drains in place. Typically it takes a few days (sometimes a little longer) to get back to a normal diet, and 4 to 6 weeks to return to normal activity. But some patients need 8 to 10 weeks, especially if they are returning to a physically strenuous, full-time job.
What about discomfort?
Some women breeze through with only mild discomfort, which can be eased with over-the counter pain relievers like ibuprofen. Women who feel they need something stronger for comfort can be prescribed narcotic pain medication and/or muscle relaxants.
Who is a candidate for DIEP flap?
You are a candidate if you have enough fat on your lower abdomen to form the breast(s) and at the size you want. You can still have this surgery even if you’ve had prior abdominal operations like hysterectomy, c-section, appendectomy, or liposuction. But you won’t be a candidate if you’ve had a tummy-tuck. Diabetics and women with other vascular conditions are not candidates.
When can the surgery be done?
You can have the procedure done as early as during the mastectomy; in fact some of the best aesthetic results are accomplished when the breast and reconstructive surgeons work together through the procedures. If you have chemotherapy prior to surgery, oncologists and surgeons recommend waiting 3 to 6 months after treatment to allow your body to recover. They recommend waiting at least 6 following radiation therapy.
For more information:
http://www.prma-enhance.com/index.cfm/PageID/1754
Breast reconstruction photo gallery:
http://www.prma-enhance.com/index.cfm/ProcedureNameID/19/PageID/1946
Forums where you can connect with other women:
http://www.diepbreastreconstruction.org/forum/
Reaching out to Triple Negative survivors
“We’ve had people calling in crying. They’ve gotten on the Internet and are petrified they’ll have a recurrence and that it means they’ll have four months to live. We let them know it’s not that cut and dry. So many variables come into play. And as the conversation progresses, our callers typically begin to feel more relaxed. They’re happy someone understands this disease. They’re comforted to hear they’re not alone and it’s normal to be scared,” says Rosalie Canosa, program division director and a clinical social worker at CancerCare, who runs the line in partnership with the Triple Negative Breast Cancer Foundation.
The help line is for anyone anywhere in their journey, from newly diagnosed to those past treatment dealing with survivor issues – to the minority who are planning the end of their lives.
When they call in, not only do survivors learn what Triple Negative is and what it isn’t, they’re connected to resources in their area, from anywhere in the United States to as far as India or Paris. The menu includes limited financial assistance for transportation to treatment, childcare, and home care. They may tap into help paying for BRCA testing if they’re eligible – to determine if they have a genetic mutation, so they can make an informed decision on how to cut their chance for a new cancer or recurrence should they test positive.
Besides an education, there’s the emotional piece. It starts with a trained ear listening as callers answer their questions like “Do you have peers in your situation?” “Is your doctor answering all your questions?” The conversations, which usually run about 30 minutes, open up as more territory is explored.
“When we hear red flags telling us there are needs not being met, the help line becomes more of a counseling service, and that’s the rationale behind having a social worker field these calls. Someone trained and grounded who understands what each individual’s life is about and recognizes socioeconomic factors, like when there might be marital or child issues. If we see someone is overwhelmed and stressed we do a series of scheduled follow ups,” says Canosa.
The Triple Negative Breast Cancer Foundation links to the help line. Otherwise you can call direct at 877-800-TNBC (8622). You can also connect with a social worker by e-mail: TNBC@cancercare.org.
Even if you don’t have questions right now, you may want to call for CancerCare’s Guide to Understanding Triple Negative Breast Cancer.
Making connections
Once we get cancer we find ourselves in a very different place, a place made less foreign when we hook up with people walking the same path, which is why Pink-link was created. It’s an online connection that you could call a match.com for breast cancer survivors – 4,400 of them from around the United States and world. When you tap into this members-only resource, you have access to a searchable database of breast cancer survivors and can find one friend, two, three, or more women to have one-on-one relationships with. Pink sisters search each other out based on their type and stage of breast cancer, therapies, age, geographical location, among other commonalities.
“Say you’re done with treatment and ready to do reconstruction. You want to connect with someone who’s had a transflap, living in your area who also happens to be Triple Negative. We can’t always match by each and every one of these details, but typically you will find a match by many, if not all of them,” says Vicki Tashman, Pink-link founder and a seven-year breast cancer survivor herself.
Pink-link has been a lifeline to recently diagnosed women who’ve moved to new areas where they know no one. Women in very rural communities reach out to survivors in Dallas, New York, Los Angeles, and other big cities to find what treatment options are out there. And hear about it, not just from the cancer centers, but the ladies themselves.
“One thing that’s typically very important to women who come here is to know that they are in control, and they are, very much so,’” says Tashman. “It’s all done by the survivor. She can click on a person’s name, view their profile, and chose to connect or not to connect.”
As membership has grown, Pink-link has spun off to include other resources, such as forums, on-line articles, and the ability to keep on-line, password protected journals.
The forums are in varied formats; a popular one is a panel of experts in multiple disciplines who answer questions in a secure on-line setting. Questions like, “How and for how long will a transflap affect my strength and endurance, and my life in general?” Or “What herbs are the best for who to help stave off recurrence?”
Other forums are more informal and interactive, with ladies learning from each other. If you drop into this Pink-link social network you’ll find postings like, “Not sure of whether to do Tamoxifen. Any thoughts from you ladies?” Women share their chemo experiences, jokes about fallen body parts, prayers, and poems. They post pictures of their grand kids. And they pump each other up with homemade videos, like a great one up now of ladies flash mob dancing in a hospital lobby –rocking the house, together, in celebration of their survivorship.
Family caregivers and friends have gotten into the picture too, launching forums like Moms of Survivors, Sisters, and even Brothers of Survivors. They hook up to learn how to care for a loved one who may not be computer savvy or may be too sick to care for themselves. Or they may get involved just to better understand the journey themselves.
“When someone first gets diagnosed, so many women, and the people closest to them think, ‘Oh my God, what’s going to happen now? Just talking to and sharing with someone who has been there is so helpful and means so very much,” says Tashman.
For more information:
Mom with a torch reaches out to breast cancer survivors
More than her tiny build, and almost as much as her hopped-up, high-on-life attitude, it was Crickett’s exquisite brown ringlets that were her signature. When those beautiful curls started falling out, weeks after her first round of chemo, she cried. Crickett cried more about her hair than knowing she wasn’t going to live, her mother, Bonnie Julius recalls.
“Hair is so much a part of who almost any woman is. We see and hear this all the time from the people who call us looking for help.”
That’s why Bonnie, along with her niece Carole Trone, started Crickett’s Answer for Cancer, seeing to it that any woman with breast cancer who calls wanting a wig, gets one, regardless of her income. But it’s not just wigs; the charity organization has accumulated a quick- expanding wish list. And to date, every request has been fulfilled. It’s this mom’s way of lightening lives of women facing the disease that her young daughter put up a short but bold fight against in 2006.
Women with breast cancer can count on Crickett’s Answer for Cancer for lymphedema sleeves, gauntlets, a one-hour massage, post-masectomy bra or supplies, wigs or other head-fittings, wig care services, or pampering – from a facial to manicure to basket of feel-good gifts.
The mom, holding a torch for her daughter, knows the healing power of generosity. “Just after Crickett was diagnosed, women from her church showered her in gifts – mainly footies and soft sleeping caps they made themselves. A friend from her job with Pfizer Pharmaceuticals made her a lap quilt that she took to every one of her treatments.”
The gifts were a true pick me up. And in fact Bonnie enjoys that plush quilt, herself, to this day.
“When Crickett learned she wasn’t going to live she told me ‘I will be watching over you and guarding you.’ Now, every day of my life, I have something of hers on my body. I wrap myself in the quilt at night. I feel like I have Crickett with me– that she’s watching over me like she promised. And it gives me that drive to keep a promise I made myself – to keep doing what we do through Crickett’s Answer for Cancer.”
In 2010, two years after its launch, the nonprofit helped 111 women. Early in 2011, after announcing the charity’s partnership with LympheDivas to give away lymphedema sleeves, Crickett’s Answer for Cancer got pummeled. The organization received 1,000 calls in two weeks.
“I am determined to never have to tell a woman, ‘We can’t afford to help you.’ So we’re doing fundraisers every month now.”
Currently Ms. Bonnie and Carole are gearing up for their annual dinner and drinks bash: “Crickettinis for A Cure”, to be held on Friday, April 8, at the Yorktowne Hotel in York, PA. Crickett loved martinis so the bartender will be whipping them up all night on what would have been her 44th birthday. All proceeds go into the pot to keep Crickett’s Answer for Cancer going.
“It’s a great party, but I feel like I have to pry my high heels off my feet with a crowbar when it’s over,” Bonnie laughs. But it doesn’t keep this loving mother down.
“I will be doing this till I take my last breath. And I plan to live to be 100. I’m 66 now, so I’ll be doing this for a long time.”
Oh, and if you’re wondering how Crickett got her name –which happens to be her proper name – the one appearing on her birth certificate – here’s the story …
“When I was pregnant 77 Sunset Strip was on, and there was this character, Crickett Blake. In the late 60′s you didn’t name your kid oddball names, and one of the nurses in the hospital where she was born told me I should be on the psycho ward,” Bonnie laughs. “But I thought it was the coolest name, and it fit her to a tee. She was just so full of energy, hopping here and there, you know, like crickets do.”
Like mother, like daughter.
http://www.crickettsanswerforcancer.org/; CrickettsAnswer@comcast.net
New study results on antioxidants during chemo
When I asked my oncologist about doing high-dose antioxidants during chemo, she was honest; she said the research isn’t there to say whether it would be a good or bad thing. My radiology oncologist, considered one of the best from Georgetown University’s cancer center, was more blunt yet “I just don’t know. I am ignorant.”
I have heard a few of my pink sisters say their doctors cautioned them against supplements high in antioxidants during treatment, swayed by evidence suggesting they can interfere with the drugs’ effectiveness. You may have heard the same, and the jury is still out, because the epidemiological data is limited. But a study recently reported (Cancer Eipdemiol Biomarkers Prev Dec 21) indicates doing some antioxidants from the time of diagnosis can cut your chances for recurrence, even if you take the supplements during chemo. The study looked specifically at Vitamin E and Vitamin C.
Background and concerns: Radiation and certain chemotherapies produce free radicals, ultimately causing oxidative damage which kills cancer cells. There is widespread concern that antioxidant supplements interfere with the drugs’ effectiveness by not only protecting healthy cells, but shielding cancerous ones, too.
The Shanghai Breast Cancer Survival Study. This study followed 4,877 women aged 20 to 75 diagnosed with invasive breast cancer in China between 2002 and 2006. At a mean four years after diagnosis findings were: 18 percent fewer deaths and 22 percent fewer recurrences in women who used Vitamin E, Vitamin C, and multivitamins. This was regardless of whether they did chemo and after adjustment for lifestyle factors, socio-demographics, and known clinical prognostic factors.
What does the data mean? In the words of Xiao-Ou Shu, MD Phd MPH, lead investigator of the study: “Our results do not support current guidelines that all supplements should be avoided during cancer treatments. The results actually suggest that vitamin supplement use in the first six months after breast cancer diagnosis may be associated with reduced risk of mortality and recurrence. To my knowledge, this study is the first large prospective study among breast cancer survivors to investigate the association of vitamin use during cancer treatment and breast cancer recurrence and mortality. The results highlight the need for more research.”
Shu suggests future studies focus on variable settings and populations, and consider factors like appropriate dosages as dose information was not available on participants in the Shanghai Study, though the majority was taking recommended over the counter dosages.
Contact information:
Xiao-Ou Shu, MD, PhD, MPH Division of Epidemiology, Vanderbilt University Medical Center, Nashville, TN; Xiao-ou.shu@vanderbilt.edu
Restorative yoga eases lymphedema and fear
If you’ve had lymph nodes removed during breast cancer surgery, you may experience lymphedema—a buildup of fluid in your arm, ankles, or feet. Drainage massages and lymphedema sleeves help, but there’s also a type of yoga—restorative yoga—to get the lymph flowing. And restorative yoga comes with other benefits.
“Practicing specific poses and breathing techniques through breast cancer yoga targets the soft tissue areas. It keeps the chest tissues from shrinking and promotes the opening and healing in this area. But it also helps with the overall sense of loss of control, fear of death, and profound changes that a cancer diagnosis can bring to your life,” says Diana Ross, who has taught yoga for over 16 years. I
When you walk into her yoga room, the lights and music are low. She covers each of her students, now resting on warm blankets to protect their kidneys from the cold. Pressing their shoulders down gently, Diana places a pillow on their eyes.
Then she leads students through a gentle flowing twist to the right, with knees bent, feet hip distance apart. “Now take notice of your very conscious inhale and then exhale and let go into the moment,” she says.
She walks them through a series of free-flowing movements, reminding them again to tune into their breathing – it’s key to relaxation. It’s key to letting go of the fear and anxiety that usually come with a breast cancer diagnosis.
Some women have been coming to her classes for years, and she has tweaked the program as their needs have changed. “As my students got older and had knee, hip, or shoulder surgeries, I began to adapt my classes for more nurturing. I use a ton of props. Soft music, forgiving bolsters to give support, pillows, and blocks to support your knees,” she says.
With years of coursework in anatomy of movement, the circulatory, respiratory, and autonomic nervous systems, Diana tells her students about the studies on yoga.
“Studies show that when patients hear they have breast cancer there is an abundance of intrusive thoughts. These prolonged thoughts may create sleep disturbances, psychological stress, and an elevation in stress hormones. But when patients embrace a steady yoga practice, along with standard care, these symptoms will decrease.”
The conversation shifts to her last trips to India, and time spent with her guru, who she calls her spiritual mother. She conjures images of being dunked and blessed in the Ganges River and standing before the Taj Mahal. Interlaced in Diana’s story telling is a little philosophy.
“What we have versus what they have not in India is so different. They are accepting of their lot. It’s a good thing to be more accepting and less wanting for our happiness,” she says, going back to a common theme: pace of mind and its tie to healing … body and mind work together to make us strong and whole.
For more on breast cancer yoga, or to learn about Diana’s Restorative Breast Cancer book, you can visit her site: www.breastcanceryoga.com. The book has 300 poses with a listing of benefits, contraindications, and easy instructions.
You can find other restorative yoga books at : http://tinyurl.com/4rn8fay
Restorative Yoga Research:
http://blogs.yogajournal.com/yogabuzz/2009/02/restorative-yoga-helps-cancer-patients.html
Blueberries against Triple Negative breast cancer?
You may have heard blueberries are potent antioxidants – great for helping to stave off cancer and recurrence. Now, a City of Hope study suggests that the blue purple fruit actually controls tumor growth, shrinks metastasis and triggers cell death in Triple Negative breast cancer (TNBC) cells. The study is available on the Cancer Research website. This is good news for people who have been diagnosed with this aggressive cancer, where so far the only arsenal is chemotherapy and radiation.
“We observed that blueberries help fight Triple Negative breast cancers by suppressing pathways critical to tumor development and migration,” said Shiuan Chen, PhD, director of City of Hope’s Division of Tumor Cell Biology.
Through their work, the researchers found that blueberry extracts not only inhibit production and mobility of TNBC cells, but cause them to die at two times the rate of cell cultures that did not have the extracts applied to them.
Other interesting observations were that blueberry group’s tumor weight was 70 percent lighter than the control group.
The amount given to lab animals was equivalent to a four-ounce serving for a 130-pound adult according to Chen.
The next step is identifying the specific compounds in the fruit believed to be responsible for these promising outcomes. Also planned are further investigations into blueberries’ potential to slow down the progression and spread of this difficult form of breast cancer.”
City of Hope researchers are about to begin a human clinical trial to test blueberries’ effect on breast cancer, as well as looking into anticancer properties of other fruits and vegetables.
See and hear researchers discuss how blueberries work against Triple Negative breast cancer in Mice:
http://www.youtube.com/watch?v=H8mr62MduuM
More on Triple Negative:
http://www.tnbcfoundation.org/State-of-the-Art%20Treatment%2
PARP inhibitors shine light on
Triple Negative breast cancer fight
If you have triple negative breast cancer you may know trials are just beginning to look for ways to treat this disease beyond chemo – hoping to find a targeted therapy, just like tamoxifen targets estrogen-positive breast cancer. Researchers believe they’ve stumbled across a class of drugs that will be the first major breakthrough in fighting this disease. The drugs are called PARP inhibitors. The PARP (poly ADP-ribose polymerase) enzyme repairs damaged DNA, including damage caused by chemotherapy. PARP inhibitors are believed to make it harder for cancer to repair damaged DNA that enables bad cells to thrive. Ultimately, PARP inhibitors increase susceptibility to chemotherapy and reduce likelihood of eventually becoming resistant – of significance as triple negative cells typically becomes resistant should patients have a recurrence.
One of several PARP inhibitors now under the microscope is iniparib. Early studies suggest that iniparib is effective against metastatic Triple Negative breast cancer—or cancer that has spread to bones or organs.
Highlights of one study on PARP combined with chemotherapy:
- In one early study, 123 women diagnosed with metastatic Triple Negative breast cancer were treated with the chemotherapies Gemzar (chemical name: gemcitabine) and Paraplatin (chemical name: carboplatin). Half the women also got iniparib.
- More than half (56%) of the women who got iniparib had some response—whether the cancer completely disappeared, shrunk, or did not grow for at least six months. These results reflect a 20 percent increase in complete response or significant tumor shrinkage.
Unfortunately, all the women eventually became resistant to iniparib, but researchers are hoping they hey have a new class of drugs to buy more time for patients, and ultimately lead to more progress in the fight against Triple Negative breast cancer. Already, there are other PARP inhibitors in early stages of development.
More information:
www.medpagetoday.com/HematologyOncology/BreastCancer/24195
www.breastcancer.org/treatment/targeted_therapies/new_research/20101213b.jsp
Update: new trial on iniparib does not lead to as promising results as previous trials. Final decision inconclusive:
Foods may stunt estrogen-positive tumors
Here’s news for the 75 percent of breast cancer survivors whose cancer is estrogen-positive: Pomegranates and certain other fruits and vegetables may suppress estrogen production. Research at the City of Hope in Duarte, Calif., suggests that the way these foods block estrogen is by interfering with an enzyme called aromatase. Aromatase converts androgen to estrogen. In choking estrogen with their aromatase-blocking ability, phytochemicals or plant-based foods, may help slow or prevent the growth of estrogen-responsive tumors. That’s what the scientists believe who are zeroing in on these foods’ role in helping to fight breast cancer. Some plants and vegetables reported to act as aromatase inhibitors are white button mushrooms shiitake, portabello, crimini, pomegranates (pomegranate also slows early stage prostate cancer), and some brands of grape seed extract The findings were surprising and promising, and research continues to learn more on how food-based aromatase blockers work and how much of what ingredient is safe for who.
More information:
http://nationalevents.cityofhope.org/site/PageNavigator/walk_super_foods eight lifting good to prevent lymphedema
www.providence.org/oregon/Health_Resource_Centers/Breast_Cancer_Center/AskAnExpert_BRC_Soy.htm
Weights to stave off lymphedema
There’s a new study reporting that if you’ve had lymphedema or are at risk of developing this condition, supervised weight lifting can benefit you. Lymphedema is characterized by excess fluid (lymph) that collects in tissues and causes swelling (edema) in them. You’ve probably heard of it, if not experienced if yourself if you’ve had lymph nodes removed to treat breast cancer. Or if you were treated with high doses of radiation. You’ve probably also heard, “Go easy lifting the groceries. And don’t lift your kids or break out the dumb bells.”
But in December 2010 a report came out stating that arm swelling was reduced by 36% in women who had nodal dissections, then followed a paced, supervised weight training regimen for one year. The reduction was actually higher in women who had the most lymph nodes removed – 70 percent in participants who had five or more removed.
Based on these latest results, breast cancer rehabilitation should be the standard of care for conditioning and strengthening the arm, and ultimately for preventing injury, said Kathryn Schmitz, PhD, MPH, the lead investigator from the University of Pennsylvania’s Abramson Cancer Center. Of 154 breast cancer survivors participating in the study, 77 women participated in twice weekly, 90-minute classes. They used free weights and machines and were closely supervised.
For more information on the study:
http://jama.ama-assn.org/content/early/2010/12/03/jama.2010.1837.full
To find a certified trainer, American College of Sports Medicine: www.acsm.org
The soy and breast cancer debate
If you’ve had breast cancer, you may have heard two entirely different debates on whether soy is good for you. Soy products like tofu and soy milk are rich in chemicals called phytoestrogens, which can function like estrogen and increase growth of estrogen-dependent breast cancer. Or so we have heard.
But in Asia, where diets are highly concentrated in soy, breast cancer rates are dramatically lower than in much of the world. In fact the Shanghai Breast Cancer Survival Study found that of 5,042 Asian women diagnosed with breast cancer, those whose diets were highest in soy had the lowest relapse rate—a 23% to 32% lower risk of recurrence compared to women who ate the least soy
Benefits of soy appeared to increase with intake up to 11 g of soy protein or 40 mg of soy isoflavone per day, but the benefits stopped after that level.
This has some researchers looking closer … does soy increase—or might it actually lower risk for breast cancer or recurrence?
What we do know, is Asians typically eat much higher concentrations of soy and from minimally processed whole foods.
While the Shanghai Study indicates that eating natural soy is probably healthy, the American Institute for Cancer Research stresses that data on soy and breast cancer are not conclusive.
What we know at this point is the phytoestrogens in this food source are “anti-estrogens.” In other words, they may block estrogen from the receptors—and possibly protect women from breast cancer. Studies found that premenopausal women may benefit most as their natural estrogen levels are high. But, studies found high levels of soy in menopausal women may add estrogen to the body and actually increase their risk for breast cancer.
To sum up:
Have a diet that includes soy from whole foods, plenty of whole grains, fruits and vegetables. Post menopausal women should stay away from isolated isoflavone supplements in pills or powder, and it is actually questionable whether anyone should use them.
Look for your soy from natural, non-genetically modified sources. You can find these products most often in organic and natural food stores. Or check with your local health/food inspection agencies.
More information:
http://ww5.komen.org/ContentSimpleLeft.aspx?id=6442451776
http://www.healthcastle.com/soy-breastcancer.shtml
The latest on Vitamin D and breast cancer 
The link between Vitamin D deficiency, breast cancer, and breast cancer recurrence is not new. But now Vitamin D has actually been shown to kill breast cancer cells.
I was so intrigued by what I read, I had to get on the phone with the clinical investigator myself, especially since I, and most of the women I know with breast cancer have a Vitamin D deficiency, and I hear it more and more.
JoEllen Welsh, PhD, a professor at GenNYsis Center for Excellence in Cancer Genomics in Albany, NY, has studied Vitamin D and breast cancer for 30 years, but for the first time, has incubated fresh human samples with Vitamin D. She took samples of early and late stage tumors, those with and without receptors for estrogen, progesterone, and HER2.
“Within days, half the cells shriveled and died in every tumor,” she said.
“Eighty percent of people have a vitamin D receptor, and if they have a tumor with this receptor it has potential to respond to Vitamin D, just as estrogen-positive breast cancer responds to tamoxifen,” says Welsh.
Vitamin D actually becomes a hormone in the body, meaning it is transmitted through the blood to any and or all tissue.
Five human samples were tested, reflecting the following types and stages of breast cancer:
- Stage IIIC ER and PR Negative
- Stage IIIA HER2 Negative
- Stage I ER and HER2 Negative
- Stage IIA ER PR and HER Positive
- Stage IIIC Triple Negative
What next?
Currently Welsh is doing genetic engineering in mice to understand the mechanisms that trigger a response.
“For example, we need to look at what levels you need? Is there a difference in how it works on triple negative breast cancer? Does it work in the presence of tamoxifen? What if the tumor has a BRCA mutation? Answering these questions is how we can predict who is most likely to benefit from optimal Vitamin D status,” says Welsh.
“Breast cancer survivor goes with instinct”
Breast cancer and alcohol
So what’s the verdict, does drinking alcohol increase the chance for breast cancer or for recurrence? The answer to this question has been flip flopping. Let’s look at the research in recent years, on up to today …
For years, to my ears’ delight all we heard was, “Drink vino! It’s good for your heart!” A large-scale study in 1995 confirmed this advice to be good—at least among healthy participants. The moderate drinkers actually tended to live longest. (The American Society of Clinical Oncology). In case you were wondering, you slid in as a “moderate drinker” if you stayed with half to two drinks a day.
I raised a celebratory glass when another study in 2008 showed that resveratrol, a natural substance in wine, suppresses abnormal cells found in most breast cancers. Wow, between jogs through the woods and my cork popping in between, I was doing myself good.
But the story on wine’s benefits changed in 2009. Perfect timing for me—the year I got my diagnosis, and was living for the weekend when I could forget about chemo and scans. I could forget about plummeting while blood cells and just nurse my liter and a half of Cab. The study reported that seven drinks boosts risk for recurrence by 90 percent. The numbers climb higher for women who are obese and or who smoke—50 percent and 120 percent higher, respectively. All the participants’ breast cancer was estrogen positive. (American Journal of Clinical Oncology). I’d been holding out that since my cancer does not feed off of estrogen, I don’t have to worry. But my new oncologist shook his head disapprovingly when I tried to negotiate my liter and a half a week. No, he said; he wants me to cut way back.
Check out this video. www.ecancermedicalscience.com/tv/video-by-category.asp?play=364&cid=5&scid=0&q= Professor Michelle Holmes, Harvard Medical School, elaborates on what all the latest research means … In a nutshell, we don’t know if quitting drinking altogether will bring the best outcomes. We know of red wine’s heart health benefits, and the jury is still out on whether the breast cancer risk outweighs these benefits.
Maybe for now we should keep with the old saying … “Everything in moderation.” But if you’re like me, and thought eight glasses of wine a week measures out as “moderate,” you might want to downsize your scale.
The woman said cavalierly, “Oh, I’ve read that book. It’s great.”
And I just about wet my pants. Because “that book” was my book, and she wasn’t someone that I knew.
With that simple interchange, I realized that all the hard work of creating and producing a book, and yes, the experience of having cancer as a 33-year-old young mother had translated into something transformative. I realized that I had become an author.
Life is like that. You get dealt a crappy hand, and in the moment, you feel as if the world has conspired to bring you to your knees. You might even feel that way for a long time, actually. But eventually, at some point, you will come up for air and realize that yes, indeed, you can breathe. And when you can breathe, you begin to wonder if there is something that can come out of the horror you have just endured.
It might be a new-found strength. Or an appreciation of things that make you laugh. It might be the love of time. Or a burning desire to Do Something with your life.
I am a writer, and so I used words to Do Something.
That something turned into Nowhere Hair, a children’s book that helps explain a loved one’s cancer diagnosis to little kids. My son, Hans, was just a smidgen over one year old when I was diagnosed with breast cancer, so I was spared having to explain all the craziness to him. But I did come in contact with lots of children in my days as a bald mother, and their stares and confusing glances told me that they didn’t understand. That they were scared.
The book that emerged is upbeat yet honest, as I wished to paint a cancer diagnosis as not the end of the world, but something that is approached with dignity and (hopefully) some style. Edith Buenen, a fashion illustrator from The Netherlands, is the primary reason the book has such a positive feel. Even in the pages that talk about the hardest things (“It makes me scared that she is sick. I want her well right now. “She says, “Be patient, little one.” That seems so hard somehow.”), her pictures are lyrical and calming. Yes indeed, mommy is cranky sometimes and wiped out and on the couch. But she is still a mommy first and foremost, filled with love for children.
The book explains that children can’t catch cancer, and didn’t cause it to happen. It ends with the universal message that what is inside of us matters far more than how we look on the outside.
I guess you could say that my personal transformation of becoming an author is allowing many many other women and children to experience their own transformation as well. One that allows for honest and open communication between parent and child. And one that doesn’t shy away from the hard things, but perhaps paints them as just part of life.
Sue Greim Glader is a mother and author living in Mill Valley, California. Nowhere Hair is available from her website, at www.NowhereHair.com. Join Nowhere Hair’s Beautifully Bald Initiative at facebook.com/NowhereHair. Her blog, Poking Around Life, can be read at www.SueGlader.wordpress.com.
The following write up about “Dairy and Cancer” came from one of my “sisters” in my breast cancer support group. I, personally question whether cutting out dairy can be as powerful as the author claims, but I’m sharing her write up because studies prove dairy is not good for many cancers. And it’s amazing how much less BC exists in parts of Asia. Decide what you think …
“Why I believe giving up milk is key to beating breast cancer…” 
By Prof. Jane Plant, PhD, CBE, Chief Scientist, British Geological Survey
I had no alternative but to die or to try to find a cure for myself. I am a scientist – surely there was a rational explanation for this cruel illness that affects one in 12 women in the UK?
I had suffered the loss of one breast, and undergone radiotherapy. I was now receiving painful chemotherapy, and had been seen by some of the country’s most eminent specialists. But, deep down, I felt certain I was facing death. I had a loving husband, a beautiful home and two young children to care for. I desperately wanted to live.
This desire drove me to unearth the facts, some of which were known only to a handful of scientists at the time. The first clue to understanding what was promoting my breast cancer came when my husband Peter, who was also a scientist, arrived back from working in China while I was being plugged in for a chemotherapy session.
The disease was virtually non-existent throughout the whole country. Only one in 10,000 women in China will die from it, compared to that terrible figure of one in 12 in Britain and the even grimmer average of one in 10 across most Western countries. It is not just a matter of China being a more rural country, with less urban pollution. In highly urbanized Hong Kong, the rate rises to 34 women in every 10,000 but still puts the West to shame.
The Japanese cities of Hiroshima and Nagasaki have similar rates. And remember, both cities were attacked with nuclear weapons. So in addition to the usual pollution-related cancers, one would also expect to find some radiation-related cases.
The conclusion we can draw from these statistics strikes you with some force. If a Western woman were to move to industrialized, irradiated Hiroshima, she would slash her risk of contracting breast cancer by half. It seemed obvious that some lifestyle factor not related to pollution, urbanization or the environment is seriously increasing the Western woman’s chance of contracting breast cancer.
I then discovered that whatever causes the huge differences in breast cancer rates between oriental and Western countries, it isn’t genetic. Research showed that when Chinese or Japanese people move to the West, within one or two generations their rates of breast cancer approach those of their host community.
The same thing happens when oriental people adopt a completely Western lifestyle in Hong Kong. In fact, the slang name for breast cancer in China translates as ‘Rich Woman’s Disease’. This is because, in China, only the better off can afford to eat what is termed ‘ Hong Kong food’.
The Chinese describe all Western food, including everything from ice cream and chocolate bars to spaghetti and feta cheese, as “Hong Kong food,” because of its availability in the former British colony and its scarcity, in the past, in mainland China.
My husband Peter and I decided to utilize our joint scientific backgrounds …
One day I realized, “The Chinese don’t eat dairy produce!”
Suddenly I recalled how many Chinese people were physically unable to tolerate milk, how the Chinese people I had worked with had always said that milk was only for babies, and how one of my close friends, who is of Chinese origin, always politely turned down the cheese course at dinner parties.
I knew of no Chinese people who lived a traditional Chinese life who ever used cow or other dairy food to feed their babies. The tradition was to use a wet nurse, but never, ever, dairy products.
Culturally, the Chinese find our Western preoccupation with milk and milk products strange. I remember entertaining a large delegation of Chinese scientists shortly after the ending of the Cultural Revolution in the 1980s.
On advice from the Foreign Office, we had asked the caterer to provide a pudding that contained a lot of ice cream. After inquiring what the pudding consisted of, all of the Chinese, including their interpreter, politely but firmly refused to eat it.
Before I had breast cancer for the first time, I had eaten a lot of dairy produce, such as skimmed milk, low-fat cheese and yogurt. In order to cope with the chemotherapy I received for my fifth case of cancer, I had been eating organic yogurts as a way of helping my digestive tract to recover and repopulate my gut with ‘good’ bacteria.
Recently, I discovered that in 1989 yogurt had been implicated in ovarian cancer. Dr. Daniel Cramer of Harvard University studied hundreds of women with ovarian cancer, and had them record in detail what they normally ate. Wish I’d been made aware of his findings when he had first discovered them.
I decided to give up not just yogurt but all dairy produce immediately. Cheese, butter, milk and yogurt and anything else that contained dairy produce – it went down the sink or in the rubbish.
It is surprising how many products, including commercial soups, biscuits and cakes, contain some form of dairy produce. Even many proprietary brands of margarine marketed as soya, sunflower or olive oil spreads can contain dairy produce. I therefore became an avid reader of the small print on food labels.
Up to this point, I had been steadfastly measuring the progress of my fifth cancerous lump with callipers and plotting the results. Despite all the positive feedback from my doctors and nurses, my own precise observations told me the bitter truth. My first chemotherapy sessions had produced no effect – the lump was the same size. Then I eliminated dairy products. Within days, the lump started to shrink.
About two weeks after my second chemotherapy session and one week after giving up dairy, the lump in my neck started to itch. Then it began to soften and to reduce in size. The line on the graph was now pointing downwards as the tumour got smaller and smaller.
And, very significantly, I noted that instead of declining exponentially, the tumour’s decrease in size was plotted on a straight line heading off the bottom of the graph, indicating a cure, not suppression (or remission) of the tumour.
One Saturday after about six weeks of excluding all dairy produce from my diet, I felt for what was left of the lump. I couldn’t find it. On the following Thursday I was due to be seen by my cancer specialist at Charing Cross Hospital in London. He examined me thoroughly. He was initially bemused and then delighted as he said, “I cannot find it.” None of my doctors, it appeared, had expected someone with my type and stage of cancer (which had spread to the lymph system) to survive, let alone be so hale and hearty.
I understand [my specialist] now uses maps showing cancer mortality in China in his lectures, and recommends a non-dairy diet to his cancer patients.
I now believe that the link between dairy produce and breast cancer is similar to the link between smoking and lung cancer. I believe that identifying the link between breast cancer and dairy, and then developing a diet targeted at maintaining the health of my breast and hormone system, cured me.
New defense against BRCA mutations 
If you have had breast cancer, and have read about the BRCA1 or BRCA2 gene, you know the scare it brings of breast and ovarian cancer or for recurrence. But finally there’s good news in the pipeline. A new therapy that actually uses the mutation to get one up on cancer. The drugs, called PARP inhibitors, target problems in a tumor’s cells caused by the BRCA genes. In a recent study published in The Lancet, the therapy significantly slowed tumor growth in 85% of participants with the mutation who had advanced breast cancer.
One of a few landmark studies involved 54 participants—half in a high-dose group, and half in a low dose group. Of the women receiving a high dose, one patient’s tumor disappeared completely, 10 had substantial shrinkage, and 12 had “stable disease” or some tumor shrinkage, though not significant. In the low-dose group, six women had substantial shrinkage and 12 had some tumor shrinkage or stable disease.
It is believed that PARP inhibitors just may turn out to be big especially for women with Triple Negative breast cancer a— hard cancer to treat, with limited options. Until now, if you were Triple Negative all you had was good old-fashioned chemo– it’s looking as if there is a possibility that PARP will be the first targeted therapy against the disease.
PARP inhibitors are being put to the test with other cancers, as well as with people who do not have BRCA mutations. One small study www.medscape.com/viewarticle/704990
reported good results in patients with ovarian and prostate cancer.
The testing, not quite two years out, has caused a buzz. Researchers believe they are moving in a good direction …. Going after the culprit itself (the bad gene) rather than the tumor the defect causes.
More on PARP inhibitors:
www.msnbc.msn.com/id/31512315/print/1/displaymode/1098/
Find PARP clinical trials: