Tuesday, November 17, 2009

Task force opposes routine mammograms for women age 40-49

STORY HIGHLIGHTS

Komen's "Making Sense of New Mammography Recommendations"
http://ww5.komen.org/ExternalNewsArticle.aspx?newsID=44299


YSC Responds to New Mammography Guidelines
While the new U.S. Preventive Services Task Force's recommendations on screening mammography, clinical breast exam and self-examination do not directly impact the young breast cancer survivors served by Young Survival Coalition (YSC), we are concerned about the recommendation of such significant changes. Although mammograms are not perfect tests, the evidence has clearly shown that they save lives in older women and should be available for all women for whom such screening is appropriate. Further, the Task Force's recommendations deal only with average risk women, not screening in higher risk women including screening residual breast tissue of young and old survivors. For these populations there is not enough scientific data to change current recommendations. YSC believes that better tools are urgently needed for younger women regardless of their risk level.

This current debate regarding the effectiveness of mammograms highlights the issues facing young women. While over 11,000 women under 40 in the United States are diagnosed with breast cancer annually, there is still no screening method for early detection of breast cancer in young women. Survival rates for young women diagnosed with breast cancer are significantly worse than their older counterparts and the disease is often detected at later stages and is found to be more aggressive. Without access to proper and timely care, a woman's odds for survival decrease.

Mammography has been found to be an ineffective screening mechanism for this population because of their breast density. Accordingly YSC urges all young women to be familiar with their bodies, know their own personal risk factors for breast cancer, be aware of the signs of breast malignancies and to promptly consult with their health provider if they have any health concerns.

Monday, November 16, 2009

Sex Without Nipples

I thought this article from Salon.com on Sex Without Nipples addressed some key issues that relate to all breast cancer survivors. Stacy Lewis, VP of Programming at Young Survival Coalition is quoted and YSC is mentioned as a resource for young women fighting breast cancer.

Monday, August 17, 2009

Genetic Alliance Advocates Partnership Program

Just received this news about great opportunities for more advocate work. It would be an honor to attend either of these events. Plus, I've never been to Hawaii!
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Genetic Alliance invites you and your colleagues to apply for one or both of the upcoming Advocates Partnership Program opportunities at:

American Society of Human Genetics Annual Meeting
October 20-24, Honolulu, Hawaii

National Society of Genetic Counselors Annual Education Conference
November 13-15, Atlanta, Georgia

The Advocates Partnership Program provides you with:

* participation in every aspect of the conference
* amazing access to the genetics community
* exclusive daily briefings with professionals
* waived, full registration to the meetings
* up to $250 reimbursement for transportation, hotel room, or airfare


Where do you and your interests fit in the overarching field of human genetics?
ASHG is the premier conference to meet people who work in all areas of human genetics, including research, industry and policy. Come and participate in educational, scientific, and social discussions about the entire translational research pipeline.

Have you ever wondered what genetic counselors do, besides interpret genetic information?
NSGC is the place to learn more about the issues affecting genetic counseling and how strengthening the relationship between genetic counselors and advocacy groups is a win-win for everyone.

To apply, please fill out the application and return it to tmurza@geneticalliance.org no later than Friday, August 28, 2009 for ASHG and Friday, September 11, 2009 for NSGC.

For more information and program requirements please visit:
http://www.geneticalliance.org/advocates.opportunities

If you have any questions, please contact Tetyana Murza at tmurza@geneticalliance.org or (202) 966-5557 ext. 205.

Good News About Wine!

An article in Business Week (August 14, 2009) suggests "Wine May Shield Breast Cancer Patients from Radiation Side Effects", http://www.businessweek.com/lifestyle/content/healthday/630061.html

This is an Italian study, so surely no biases exist, right? Anyway, I am content to see a pro-wine study. heh heh I'll have to check the actual study data to find out if it matters if it is red or white wine.

Thursday, June 11, 2009

LBBC Teleconference Call: Breaking News from 2009 ASCO Meeting

Living Beyond Breast Cancer Teleconference, June 11
Speaker:
Virginia Kaklamani, MD, DSc, of Northwestern University, provided an overview of the latest medical research and quality-of-life news reported at the 2009 meeting of the American Society of Clinical Oncology.

Dr. Kaklamani is an assistant professor of hematology/oncology at Northwestern University. She completed her fellowship in hematology/oncology in 2003 and received a Master of Science in clinical investigation from Northwestern University. Dr. Kaklamani has a certification from the American Board of Medical Oncology and her interests include breast cancer, cancer genetics, studying high risk families and the role of exercise and diet in breast cancer.

Lymph nodes
whether to do therapy directly on the lymph nodes or not
benefit to adding radiation to lymph node region if 1-3 positive nodes?
if larger tumor (2+ cm) and positive nodes, then some benefit to add radiation to axillary, if smaller tumor, not so beneficial.

Tamoxifen
metabolism of tamoxifen. It is the metabolized form that is the active drug. If can metabolize tamoxifen well, then it is very effective.
anti-depressants (Lexepro, Zoloft and commonly used antidepressants) may affect tamoxifen (endoxifene levels). For example, taking Zoloft reduces effectiveness. Lexepro does not interfere, so is fine to use.

Chemotherapy trials
Avastin
inhibits the blood vessels from forming. Avastin is an antibody that goes to the tumors and keeps them from growing. Allowed to use it with Taxol in breast cancer. The Ribbon 1 trial is looking at taxane and zolota to see how effective it is in combo with these. It showed that it is effective, no matter what the treatment using in combo.

Aromatese inhibitors
how they affect brain function - short term memory issues
large adjuvant trial looked at cognitive function between tamoxifen and letrozol. Letrozol did a little bit better than Tam. Study found that all participants had lower cognitive function than women of the same age

Diet, Exercise
Exercise
not a lot of data, not a lot of randomized trials -- but women who exercise do better. IT is a predictor of how women will do.
Diet
There doesn't seem to be a specific diet related to decreased breast cancer recurrence. Weight loss or at least weigh maintenance do better than women who either gain or lose weight. Weight more important than diet.
Supplements
no supplement has been foind to be helpful in protecting against or helping women with breast cancer
Vitamin D -- no difference found -- but when start measuring Vit D levels only 25% of patients are Vit D sufficient. 75% of us are Vit D deficient, therefore, we should encourage women to take supplement to maintain a healthy level of Vit D.
Ask doctor to measure Vit D level!

PARP Inhibitors
Help repair DNA -- if inhibit, it keeps DNA from being repaired -- in cancer cells this is good. For Triple Negative, there already is an issue with the repair mechanism of the cell, so if add a PARP inhibitor, the cell won't be able to survive and will die. Use PARP in Triple Negative and BRCA1/2+ carriers.
-Alaporit (oral PARP Inhibitor) -- gave only PARP Inhibitor (had had chemo before and didn't respond) 41% had response to PARP Inh. -- not much toxicity (fatigue, nausea only), so can be used effectively by itself.
-BSI201 (intravenous) -- looked at chemo with gemcitobine and carboplatin with and without PARP. By adding the PARP Inh. to the chem, respond rate increased hugely. 16% to 48%! Progression free survival increased, and significant improvement in overall survival. It is showing effectiveness in population that hasn't had many alternatives when standard treatment not working.

Tuesday, April 14, 2009

Excellent News about Triple Negative Breast Cancer

"Unprecendented Partnership between the Triple Negative Breast Cancer Foundation and Susan G. Komen for the Cure will Fund Collaborative Team at University of Alabama at Birmingham"


Yep, that's a $6.4 Million research project being funded! The project will be looking at an antibody that the researchers developed to target triple negative breast cancer tumors. A targeted therapy for Triple Negative.....that is awesome news and way overdue.

Another news story I saw today, unfortunately brings up controversy concerning legislation introduced a few weeks ago. Arguments are being made that the legislation gives false hope to young women and is unnecessary. I personally think it is wonderful to mention women under 40 in legislation and to bring awareness to the unique needs of young adults. So phooey on the politicians who think this is unnecessary and that breast cancer in women under 40 is so "rare". 

Tuesday, March 24, 2009

Advocate Mentor Program

I am thrilled to be accepted to attend an Advocate Mentor Program at Indiana University April 21-23, 2009. This program is bringing advocates from Atlanta, Houston, Denver and Indianapolis to participate in education and experiential learning opportunities in genomics, proteomics and pharmacogenetics. I get to go because they accept advocates from other areas based on space available. :-) The Research Advocacy Network and Young Survival Coalition support the program.

This program works with advocates to provide an understanding of the new science in genomics, proteomics and pharmacogenetics. Participating advocates will meet and work with researchers in these areas. The program I am going to is not offered in Illinois right now, but is being offered in Indianapolis. The best part is that I received a scholarship to attend and all travel and expenses are paid for! 

A few details about the program. It is a project of the Advocate Core of the Indiana University Department of Defense Center of Excellence Research Grant (https://cdmrpcures.org/ocs/index.php/eoh/eoh2008/paper/view/1343). The program includes educational webinars before the face-to-face sessions, and the on-site sessions include experiential learning opportunities like being in the lab and spinning down samples and following tissue samples. I can't tell you how much I am looking forward to that experience. My inner scientist is jumping for joy!

I hope that when I am back from the Advocate Mentor Program I can have a chance to share my experience with other Patient Advocates. Even further, I hope to find out how we could get this program to happen in Illinois, involving the NCCTG and local researchers. It would be great to build local research/advocate relationships so that we can serve on study sections, concept and protocol review committees and ad hoc committees needing advocate input. 

Friday, February 20, 2009

LBBC Teleconference: Understanding Lymphedema

Speaker: Andrea Cheville, MD, MSCE, Associate Professor of Physical Medicine and Rehabilitation, Mayo Clinic

Quality of life is reduced with lymphedema because it is a lifelong problem and requires constant care. 

Lymphatic system are capillaries and converge in larger and larger vessels and terminate in lymph nodes in axilla. Its function is to cleanses the cell tissues. Between 5-10% of cell fluid leaks out and remains in the system. The lymphatic system cleans this 5-10% of waste up. Lymphatic system removes the large molecules of waste.

Removing the lymph nodes in order to stage the cancer and to exert local control of the cancer (remove it). 

Three main functions of the lymph nodes:
  1. Removes useless waste 
  2. thickens or thins the fluid 
  3. detects the presence of any harmful microbes (bacteria)
When removed (and/or irradiated), increases risk of cellulitis and infection since body is less able to detect bacterial overgrowth at the early stages. 

Accumulation of proteins can cause pain, achiness, heaviness, swelling. Lymphedema doesn't cause focal, localized pain. Localized pain should not be ignored, but worked up separately. For example, wrist pain. An inflamed tendon can place the woman at risk for lymphedema! (FYI, I had localized pain at my wrist, and sure enough, lymphedema came next. Diagnosis came that I have thickening of the nerve in my wrist, thereby constricting the ability of the fluid (that now has larger debris in it) to drain from my hand properly.)

Most likely shows up after a period of overuse -- on a hot day, more blood flowing, and overuse. Once that period is over, the lymphatic system can get control over it and the swelling goes down, but the swelling is going to be a lifelong condition and does require well-trained, experienced help to manage.

Risk Avoidance
Don't have great research on risk avoidance. The usual advice applies, but all of that is based on theory. No one has done rigorous clinical research to determine the best practices for preventing lymphedema.

Breaking Skin
Avoid giving bacteria access to the protein-rich tissue. Dry skin can develop microfissures that let bacteria in, so not only risk from scratches, etc. Keep skin moisturized, Dove soap is a good choice, low Ph lotion is a theoretical recommendation (such as Eucerin). Not necessary to avoid manicures, but should avoid cutting back the cuticles. Keep the cuticles well moisturized with lotion, oil, etc. 

Exercise Conflict
On one level, exercise increases lymphatic fluid --
On another, the lymphatic system performs the best when exercising, which is believed to improve lymph removal. Increased absorption and transport.
(FYI, exercise has shown improvement for me, however, during exercise, there tends to be some increased swelling, but then it functions better for the hours and for days after.)

Increased Inflammation
Sunburn is bad because it increases blood flow to the area and increases fluid leakage.
Immersing self in hot tub causes dilation of blood vessels and increases fluid leakage. You can submerge everything else except the arm at risk in the hot tub. 

Tendonitis/chronic inflammation causes more blood flow and increases fluid leakage. (FYI -- my lymphedema treatment CAUSED increased inflammation in my wrist, which led to problems with lymphedema in my hand. Argh!) Lymphedema specialists must become more aware of localized pain symptoms and treat those before treating for lymphedema. 

Airplane Travel
the lower pressure in the airplane is increasing the lymphatic load -- reduced pressure, less of a barrier, less impedence to the fluid leaking out of the cell tissue. Also being sedentary causes lymph nodes to become sluggish, so if wear sleeve on plane, make sure to move arm, squeeze and release...
Increased salt -- leads to water retention and increased fluid.
carrying heavy bags that cut off collateral circulation.

TREATMENT
Complete/Complex decongestive therapy is the primary system of care -- manual lymphatic drainage (takes years for therapists to master. Seek out practitioners who are skilled in MLD!)

Compressive Bandaging in multilayers.
Therapy includes extending the wrist and bending, punching motion to straighten and bend the elbow to get the muscle to expand and contract. 
Very tedious as a lifelong activity, especially if wrapping with bandages yourself. Use a compression device as needed, such as a compression sleeve at nighttime, for example. 

Low Level Light Therapy
Administering infrared light to the armpit, theoretically simulated the nodes and improving blood flow to the area. Becoming increasingly available. It is not harmful, but data not currently sufficient for recommending this as standard of care, but won't cause harm. 

No medications recommended because it did not offer patients any benefit and 6-7% developed liver toxicity.

Alternative Therapies
Extract of horsechesnut -- not rigorously studied, but not harmful, not sure if better topical of ingested
Butcher's Broom -- data a bit promising, but not rigorously studied
Acupuncture -- not found to be beneficial by her (she is a certified acupuncturist), but maybe treating opposite arm, feet could be beneficial

Lymph node transplant -- Promising, on the horizon
introducing lymph nodes from another part of the body and transplanting them into armpit -- seems promising, but no trials, and no long-term results yet. 

Liposuction as treatment for established lymphedema. Effective for reasons we do not understand. Body tends to deposit fat in areas affected by lymphedema for unknown reasons. If the multimodal therapy does not help, then liposuction does help. But in order to sustain it, you must use compression therapy 24 hours. 

My questions (didn't get to ask them of the speaker):
  • Could post-surgery MLD help the lymphatic system to recover from the shock of the procedure? Should MLD be required follow-up/treatment for the patient?
  • Where can one find Low Level Laser Therapy practitioners, or to purchase a system for self-use?
  • Is it really not recommended to have any massage therapy done? (Separate from MLD)
  • Myofacial release -- could it be considered an alternative therapy since it helps to work the muscle and release shortening of muscle?

Tuesday, February 3, 2009

LBBC Understanding Treatment Options

Living Beyond Breast Cancer Understanding Treatment Options brochure is really an excellent resource. Wish I had it in 2007. (I do wish they used more pictures of young people throughout the brochure.)

I should also mention that LBBC is having a free teleconference on 2/20/09 on Understanding Lymphedema. I am looking forward to hearing new news on lymphedema treatment. Every woman should dread this annoying (and I bet really preventable if we really tried!) side effect of breast cancer treatment.

Wednesday, January 28, 2009

Identifying Ovarian Cancer with Proteomics

After getting a pelvic ultrasound this morning and the subsequent paranoia that I have, I did some surfing to read more about ovaries and ovary size, etc. I ran across a website, OvaryResearch.com and found this very promising information that is new to me. It is especially promising because pelvic ultrasounds are not very good screening tools anyway. 

A study in 2002 found that the use of proteomic patterns in serum (identifying a pattern of proteins) may help identify ovarian cancer. I wonder why this is the first time I am reading about it and think I will need to do more research to find why this hasn't become a standard screening methodology. The results of the 20o2 study were able to screen 100% of ovarian cancer carriers and correctly screened 95% of non-ovarian cancer carriers. So what happened to this promising method for screening??

Monday, January 26, 2009

Notes from LBBC Teleconference "Breaking News from 31st Annual San Antonio Breast Cancer Symposium"

Speaker: Dr. Kathy Miller

Adjuvant Hormone Therapy
-Increased use of Aromatase Inhibitors -- better survival than Tamoxifen 
-Also discussed: OncoDX Score, Big 198 Study
Studies now looking at how women metabolize Tamox and Aromatase inhibitors and seeing if it is possible to choose the therapy based on the enzymes inherited (how well a person metabolizes these). Can hormone therapy be individualized to people?
-Bone health -- aromatase has increased bone loss risk, studies show bisphosphanates are important to administer immediately with aromatase therapy

Adjuvant Chemotherapy (CURE article here)
FinnXx Study -- incorporating Xeloda (capecitabine) -- HER2-, lymph node involvement 
NSABP30 Trial & BCROG(?) Trial (gave 6 cycles instead of 4). These trials looked at the TAC (Taxotere, Adriamycin, Cytoxin) regimen  and compared dosage, sequence. 
Three arms of the trials:
  1. 4 Adria then 4 tax on 3 week cycle each (sequential arm) -- lower risk of recurrence of all 
  2. 4 A + 4 T
  3. 4TAC
Summary:
The second trial adminstered 6 doses versus 4. There was no significant difference found between fewer doses, but the sequential arm had the lowest recurrence of all and fewer side effects (probably due to lower dosages of the high toxicity drugs). Conclusion is that the TAC schedule does not offer improved outcome and TAC should be "retired".  Recommendations coming out are to make treatment interval every 2 weeks or taxanes weekly and get rid of the TAC regimen.

HER2+ news
Lapatnib -- benefit for metastatic HER2+ 
TDM1  (Trastuzumab)

Triple Negative Breast Cancer and Chemotherapy

Again, no studies being reported at San Antonio broke out pre- vs post-menopausal women! Argh! 



Prescription: 3 Cups of Tea Daily

This article gave me pause today. I joined a Tea-Of-The-Month Club at work last year and haven't been drinking the wonderful tea samples I get every month. Since this article in the 1/23/2009 Telegraph is extolling the evidence that 3 cups of tea a day can reduce breast cancer risk in women under 50, I might just have to force my tea habit!

Ooooh, but I like this article (in the July 7 2008 Telegraph) better. The chemical resveratrol, found in blueberries, cranberries and peanuts that has a tumor suppression property, is also found in the skin of grapes that make red wine! Red wine fights cancer! I'll just drink tea and red wine all day. 

Another Punch to the Ovaries

Alright, already, I didn't realize there was so much literature out there about the benefits of oophorectomy for BRCA1/2 carriers. Am I running across this more and more as a sign that I need to hurry up and get this one over with??? The latest article has an innocuous-enough sounding headline, "Surgery can lower cancer risk in high-risk brca1/2 carriers".  I should have guessed it would be advocating for ovary-removal. Sigh.

Monday, January 12, 2009

Why I Freak Out Over Being Triple Negative

Not only am I BRCA1+ and only about 5-10% of all breast cancers are hereditary breast cancers, but I was also diagnosed with Triple Negative breast cancer (TNBC), the most aggressive type of breast cancer. TNBC only represents 15% of all breast cancer cases, but accounts for as many as 25% of all cancer deaths. I feel like the odds are stacked against me. 

And you know what else is scary? Read about the founder of the Triple Negative Breast Cancer Foundation:
"Launched in 2006 in honor of Nancy Block-Zenna, a young woman who was diagnosed at age 35 with triple negative breast cancer and died less than three years later, the Triple Negative Breast Cancer Foundation focuses on raising awareness and supporting research to find a cure for the disease."

Sunday, January 11, 2009

FORCE Hereditary Cancer Conference

I will try to attend this conference if finances allow:

Join us May 14 – 16, 2009 in Orlando, Florida for the 4th annual Joining FORCEs Conference! The Joining FORCEs conference is an annual forum on hereditary breast and ovarian cancer. We welcome anyone concerned about hereditary cancer: cancer survivors, high-risk individuals, previvors, peo­ple with a BRCA mutation or family history of cancer, and health care providers who treat high-risk patients. For more information visit:

http://www.facingourrisk.org/annual_conference/index.html

Non-invasive Targeted Radiofrequency Cancer Treatment

This is pretty exciting: an article and video that describes a radio frequency treatment of cancer cells developed by John Kanzius. This treatment destroys cancer without toxic chemicals or horrible side effects. It's an amazing story and a promising development.

As I was watching the video and reading about the treatment, I couldn't help wondering whether this would be a better way to manage lymph nodes. Instead of blindly removing lymph nodes, the nanoparticles would cling to any infected nodes and the radio frequency would destroy only the cancer cells, leaving the healthy lymph nodes to continue functioning. I wish I could have had the opportunity to have that method used on me, rather than having the invasive removal of lymph nodes that resulted in lymphedema issues that I have to deal with for the next 50 years.

Saturday, January 10, 2009

Breastcancertrials.org

Another resource I discovered today, breastcancertrials.org. And, wow, what a great site.

For example (unfortunately, this one is in Stanford, CA and not accessible to me):

Lymphedema Prevention and Detection

To Prospectively Evaluate the Potential for Simple, Effective Lymphedema Prophylaxis in Breast Cancer Survivors Who Show Early Evidence of High-Risk Status

Purpose

The purpose of this research study is to detect patients who might be at increased risk for the development of arm lymphedema based upon repeated non-invasive examination of the arms. When preventive interventions are appropriate, this study will compare the effectiveness of the usual treatments of massage and elastic sleeves with a new device, Flexitouch, which electronically simulates the effect of massage upon lymph flow.

Study groups

All participants will be monitored for evidence of early impairment in lymphatic function. Prior to surgery and once every 3 months after surgery, arm volume measurements and bioelectric impedance analysis (BIA) will be performed.

If a significant increase in BIA occurs, participants will be randomly assigned to 1 of 3 preventive treatment groups:

  • Standard Care: Self-administered lymphatic massage in addition to a standard compression sleeve
  • Flexitouch: Use the Flexitouch device to stimulate the lymphatics in addition to a standard compression sleeve
  • Continued Follow-Up: Continued monitoring of both arms

Additional procedures

If signs of lymphedema develop, a small punch biopsy of the skin will be taken. Blood samples for study purposes. Optional donation of breast tissue and skin from surgery.

Trial length

24 months

Post-trial follow-up

Regulary, up to 5 years

Sponsor

Other

More information on this clinical trial

Cancer.gov (PDQ®) [Oct 23, 2008] , Google Scholar, PubMed, BreastCancer.org/Lymphedema, Dr. Susan Love/Lymphedema

Army of Women

Just discovered this resource today, Army of Women. It's a partnership between the Dr. Susan Love Research Foundation and the Avon Foundation, and a partnership between scientists and women. Partnerships that promise to accelerate research that is necessary to end breast cancer.

Wednesday, January 7, 2009

Metastasis Gene Identified

I suddenly want all of my genes to be analyzed, categorized and managed

Fundraising

Enter to win some Save the Ta-ta's fashion through January 20, 2009. I will need to look into getting a similar bag for the Scar Walkers fundraiser auction.....

Revolutionizing Breast Cancer Screening

A technique that uses radar to image breasts is being trialed in the UK. The radar creates a 3D image of the breast, like an MRI, but does it faster and with less radiation exposure, and there is no squishing involved. The coolest thing as that the trials for the next 12 months will focus specifically on young women "as these can prove the most challenging".