My last visit with my oncologist

I saw my oncologist last week for my routine lab work and check up. Naturally I asked her about having MRI without contrast. Apparently they want to see the veins and all the intricate details and that is the job of the contrast. She thinks I'm fine for a while and perhaps skip every other year. I'll just have to be pre-medicated and squeeze (literally) in mammograms too. As you know, I'm not too thrilled about doing mammograms since it did not detect my initial tumor but I'll entertain the idea.

The following day I received a voicemail about needing to call them back to talk about ordering in a prescription. Whoa! A prescription? What??!!?? My potassium level has been low or in the low range since the summer of 2008. The range is 3.5 to 5.1. I've been dancing around 3.6, my highest, to my latest and lowest one of 3. Usually my lab sheet has an L for low on my potassium. This last lab sheet had an L with an exclamation following it! L!

Potassium is vital for many things but it's very important for nerve, muscle and most importantly my heart muscle. I was given four doses of Adriamycin and a year's worth of Herceptin back in 2006 and 2007. Both are known to cause cardiac issues. I'm currently on potassium supplements 20 MEQ but I also have many unanswered questions. WHY do I have low potassium? Never Google because it can freak you out. I'm waiting to hear back from my oncology office concerning my questions and we'll go from there. My diet is pretty potassium friendly but all the research I've done states that low potassium is usually not from what you eat. Either way, I'm downing my bananas, organes and coconut water!


My vitamin D3 is pretty stable in the 40's which really surprises me since we've had very little sunshine in Austin with El Nino. I've been placed on 50,000 IU once a week for the next four weeks to boost it up. My insurance does not cover these 4 supplements but thankfully they were less than $20.

So, hopefully I'll know more with my next post. Live long and prosper!

MRI Number 5 & Lessons I've learned

I actually did not have my MRI on January 18th. Apparently there is a new protocol for premenstrual women. MRI must be performed 7-14 days after the first day of the last menstrual cycle because of all the false readings. I think this is wonderful that they are doing this but they did not tell me about this when I scheduled my appointment. I was reminded of my MRI the Friday before my MRI and no one told me of this. I checked in Monday morning and no one told me of this. It wasn't until I was finally called in and standing in the changing room when I learned about this. Needless to say, I was not very pleased.

I've been very vocal about them telling women ahead of time. They said they would go ahead and test newly diagnosed women. They were not able to provide me with actual research but that it was instated the end of last summer. I was not aware of this so I am informing women I know about this and making enough noise for them to be notifying their clients prior to an MRI.

A week later, January 25th was my MRI. Everything went smoothly enough as I spoke to the technicians and asked them about the new protocol. My scan went well too. It's never very comfortable having to lay face down with your arms above your head for a good 40 minutes. When I was done I remember my right arm was very sore from me lying on it. My face also felt very sore because I was lying on it. It wasn't until I got in the changing room that I noticed that my left eye was slightly swollen. I asked the tech if it was an allergic reaction. She said most likely. (Did she not notice it when I first got up from the MRI machine? ) I was asked many questions and my vital signs taken every few minutes. I was given Benadryl and was detained there for monitoring. The swelling and itching went down drastically in the 45 minutes I was there as the benadryl kicked in. The above picture was taken about two hours after everything happened. There is still some swelling above my iris. I wish I remembered to take a picture of it when it first happened so you can compare the two.

Anyway, if I want contrast in the future I would need to have steroids and antihistamine the day before and the day of my MRI. I've been doing some research on the dye and it's actually pretty scary. It's ironic how not having this test can delay early treatment from a recurrence but having this test may kill me too. (Or have adverse side effects.) I did learn that you can do MRI without contrast and the accuracy is still the same. The contrast is good to see the blood vessels. I see my oncologist in February so I will need to pick her brain. I'm not done with my researching but I learned a great deal from MRI number 5.

By the way, I received the happy phone call a few hours ago that everything was clear!

Annual MRI Tomorrow

I have my annual MRI first thing tomorrow morning. Most scans don't worry me too much since I know I've been very proactive with my health but there's always the little "What if" you hear in the back of your head. This coming November 16th will mark my 5 year Cancerversary which excites me in many ways. People that are considered triple negative (HER2-, ER- and PR-) are thought to be cancer free after 5 years. Unfortunately that is not the case for me. I'm triple positive and being HER2 + makes mind rather pesky but I won't take my 5 years for granted!

So I'm off to bed and hopefully will get a restful sleep. I'll start off my morning with a list of things I'm grateful for.

My First Bike Ride

I've learned how to ride a bike when I was a little girl. On September 25, 2010 I will be riding in my first bike ride-ever! I'm nervous and excited about it at the same time. I've done a 5K (nothing more advanced but I've participated in a run before) and jogging is something I can easily do once I lace up my shoes and head out the door.

Riding the 2nd Annual Texas Mamma Jamma ride holds much significance. I bought my mountain bike before I was diagnosed. I rode mainly at Walnut Creek and did trials and hills that impressed me. The exhilaration of the climb or from coming down a big hill used to set me free. Fast forward to post diagnosis. After having multiple surgeries to my chest, mountain biking scares me. I've done Brushy Creek where it's a flat trail but it's safe.

At this point I'm uncertain if I'll ever feel comfortable enough to reride those hills. Maybe I will be able to do it one day... For the time being I'm excited to road ride and for a good cause! I've bought slicks for my mountain bike and plan to ride at least 46 miles but will ride 66 miles if I can. I will be at a disadvantage because I will be on my mountain bike but I don't have a road bike so I do not know the advantages of a road bike.

The Texas Mamma Jamma benefits 10 local organizations so please donate if you can. Everything counts, even $5. If you don't want to donate, why not volunteer or ride yourself? Click here to donate! Many thanks to Paul and Mary Ann for their donations. I know you would ride with me if you were here...well, maybe only Paul but I sure appreciate your support!

Neti Pot

Wow! What a cold winter, even here in Austin! My daily use of the neti pot prompted me to start my 2010 blog about it. If you don't have one, you may want to consider it. It's been around for a long time but I discovered it post diagnosis.

The neti pot flush out your nasal cavities using the flow of gravity. Yes, the spout you see does connect with one nostril and the saline inside comes out the other side. I usually use warm water with a pinch of Himalayan sea salt to make my saline.

I use it for several reasons. 1. I have allergies in Austin in March and May. I make sure I neti once to twice a day depending on how I feel. It helps flush out the pollen in my nose. I usually avoid allergies medicine. My main culprit is eye irritation which I flush out with some clean eye saline. 2. I use my neti religiously during the winter time when to combat arid temperature. It helps keep my nasal moist AND that helps it stay healthy against the cold. 3. I use it after I fly. The neti pot helps flush any germs and bacteria trapped inside my nose.

The white one on the left is my home neti pot and it's ceramic. The green one on the right is my travel neti pot. I recently bought the travel one and it was a life saver while I was in NM two weeks ago. It helped keep my nose moist and (knock on wood) I escaped another year back of getting sick.

Does it really work? It makes sense to me. It takes just about a minute or two so why not? I prep my neti pot by putting a pinch of salt in my pot. I typically neti when I'm in the shower so there's no mess and it's super quick. You can breathe through your mouth while you're using the neti pot. I've taught three friends to do the neti pot and they now do it religiously. It's amazing how well you can breathe and without medicine!

Your neti pot should come with instructions or you can google it. You can also buy solution for your neti pot rather than using the Himalayan sea salt. I know it sounds odd but what do you have to lose if you have bad allergies, live in an arid climate or if you're typically sick? You can find them in places like Whole Foods, Vitamin Cottage and other health stores.

Gene Patenting?

The following is my personal opinion/statements and does not reflect the opinions of any organizations I am affiliated with.

There are two known genetic mutations that causes an increase in breast and ovarian cancer, the BRCA1 and BRCA2. Myriad Genetics, a private company based in Utah, owns the human gene patents on the BRCA1 and BRCA2. The patent prevents other researchers or companies to look at these genes.

This is harmful for many reasons but I will list only two of them:
1. No competition in test price which is about $3100.
2. Other researchers and companies cannot test the many mutations along the BRCA genes. (Remember that I have a BRCA1 variant of uncertain significance and further testing cannot be done and are actually not being done to see how significant this variant really is. I was the third Asian that had this variant. I'm treating myself aggressively as if I have the mutation, hence the bilateral mastectomy. I finish up Tamoxifen in two years, when I'm 35. What then? Do I have an oopherectomy to remove my ovaries? That would be my option if I really am BRCA1 positive but am I truly BRCA1 positive?)

On May 12, 2009 genetic specialists, researchers and cancer survivors are represented by ACLU to challenge the patents on the BRCA genes. Should human genes be patent? What do you think? Knowledge is power, learn more.

To learn more www.aclu.org/brca
Liberate the Breast Cancer Genes video

Young breast cancer survivors encourage other young women battling breast cancer

http://www.austinwomanmagazine.com/Health/2009/Fall/Articles/30_Breast_Cancer.html

Article on the Pink Ribbon Cowgirls by Darline Turner:

Women in their 20’s and 30’s are on the fast track to full lives. They’ve completed college and many have earned advanced degrees. They have careers and are pursuing their intellectual dreams. Many women meet their life mates and plan long-term relationships for the first time. Thoughts turn towards starting families and children; how to balance all the facets of their busy and exciting lives? Endless possibilities exist and young women stand poised to move forward – strong and confident. But for many young women, this forward progression comes to a screeching halt when they are diagnosed with breast cancer.

According to Surveillance Epidemiology and End Results (SEER) of the National Cancer Institute, it is estimated that 192,370 women will be diagnosed with and 40,170 women will die of cancer of the breast in 2009. 12.4% of the women diagnosed between 2002 and 2006, the last years for which data has been compiled, will be women under age 44.
“A young woman with breast cancer is pulled out of her peer group,” says Michele Burton, a young breast cancer survivor. “Her entire focus shifts from career and family to survival. Although friends and family members try to be supportive, they really can’t understand the impact that a cancer diagnosis has on a young woman. The body image issues alone are overwhelming.”

According to SEER, the median age at diagnosis for breast cancer is 61. Breast cancer support materials and groups target their information to women in or near this age group. Young women attending these support groups seldom find answers to questions such as dating with breast cancer, fertility preservation and raising children while on chemotherapy. Burton, a volunteer at the Breast Cancer Resource Center of Austin (BCRC), along with Shauna Martin and Audra Outlaw, also young breast cancer survivors, organized The Pink Ribbon Cowgirls – A Social Network of Younger Breast Cancer Survivors. The group provides support and information to young women with breast cancer and operates under the direction and support of the BCRC.

The Pink Ribbon Cowgirls held their first meeting in April 2006 at Central Market Café on North Lamar Boulevard. With each luncheon, the group continued to grow. Today, three years later, the group consists of 150 members, has representation on the Breast Cancer Resource Center Board of Directors and now has its own director of Young Survivor Services, Runi Limary, a two-year breast cancer survivor.

“The Pink Ribbon Cowgirls is really a social networking group,” says Limary. “We organize girls’ night out evenings, speaker meetings, workshops, seminars and family-friendly activities.” They discuss topics like nutrition, fitness, sexuality, fertility and family planning, caring for young children during treatment, career and dating issues. “Our focus is on being strong and thriving,” says Limary. “We are all very aware that we were diagnosed very young and that having cancer sucks. We do what we can to support one another. We’re really here for one another.”

Limary was 28 when she was diagnosed with breast cancer back in 2005. She found a lump in her right breast on self-examination. “I went and had an examination by my physician who sort of pooh-poohed the idea of me having cancer. She did order a mammogram and there was nothing seen, so she advised me to have another mammogram in six months.” Limary was very concerned and actually had a follow-up three months later because the lump seemed to double in size. “I had a needle biopsy at that time and it was negative. I saw a surgeon three months after the biopsy who removed the lump and sent it for evaluation. The Pathology report came back positive for stage one cancer without lymph node involvement.”

Limary had a mastectomy with reconstruction in January 2006. Her breast tumor came back from pathology HER 2+ and her surgery was followed with five months of chemotherapy. Because her tumor was estrogen-sensitive, she is taking Tamoxifen suppression therapy. In 2007, Limary tested positive for a variant of the BRCA 1 gene mutation. She decided to have a prophylactic left mastectomy with reconstruction. Limary completed all therapies, (with the exception of the Tamoxifen, which she will continue to take until 2011), in November 2008.

One of the most difficult challenges that young women face is preserving their fertility and having children while battling breast cancer. Michele Burton found a lump in her breast on self-exam in 2001. Her gynecologist also felt the lump and referred Burton for a mammogram. She explained that Burton’s risk of having breast cancer was low because she was just 32 years old. Burton’s mammogram and additional ultrasound images showed “micro calcifications in her breast.” She did not receive treatment at that time and had a repeat examination in six months. At the re-examination, a radiologist who specializes in breast disease was more suspicious of the spots on the mammograms and asked Burton to have a biopsy right then and there. The biopsy results showed that Burton had invasive stage one ductal carcinoma. Two weeks later, she found out that she was pregnant.

“It was all so overwhelming,” says Burton. “Everyone I talked to said to terminate the pregnancy, but I didn’t want to do that. Finally, I went to MD Anderson Cancer Center in Houston. Those doctors were the first and only ones to tell me that I could actually continue the pregnancy.” Burton had a lumpectomy with sentinel node biopsy in her first trimester and started chemotherapy in her second trimester. Three weeks after she completed chemotherapy, Burton gave birth to her daughter. One month after delivery, she had radiation therapy and Burton also completed five years of Tamoxifen therapy in 2008. To date, Burton’s daughter has no known developmental problems. Time will tell if she has any fertility issues as a result of her mother’s chemotherapy.

In May 2002, Audra Outlaw was 31 years old and had been married for eight months when she noted a lump protruding from her left breast. Mammography could not detect any tumor, but ultrasound revealed two tumors. Outlaw’s biopsy results indicated that she had very aggressive, locally advanced, invasive, ductal carcinoma, between stage two and stage three. It had entered the lymph nodes and her doctors predicted that it would spread.

“It was a very emotional time,” says Outlaw, who understood that her cancer treatments would likely leave her infertile. “I felt so badly that my husband would never have the family that we had hoped for. I wasn’t even sure how long we’d have together. It was also very difficult to imagine having both breasts removed. But I knew that it was the right thing for me to do. I couldn’t wait around monitoring the tumors and waiting to see if the cancer spread. I didn’t want the worry.”

Outlaw had her surgeries performed at MD Anderson Cancer Center and her chemotherapy here in Austin. Once again there was trouble. “I developed painful ovarian cysts while on the Tamoxifen. While it was blocking my menstrual cycles, it didn’t completely suppress them. That meant I had a chance at being fertile enough to have a baby.” It was a very narrow window, but according to Outlaw’s obstetrician, Mark Akin, MD, it was enough to try one cycle of Clomid. Outlaw took the medication and conceived. She delivered her son in June 2005, two years and two weeks after her breast cancer diagnosis. Outlaw conceived a second child naturally, and delivered a healthy baby in February 2007. There is no sign of her breast cancer recurring.

Shauna Martin’s course was a bit more complicated. Diagnosed with stage two breast cancer in her left breast in August 2005, Martin knew she wanted more children. At 33 years old and with a 19-month-old son, Martin relentlessly researched how to preserve her fertility. She contacted Fertile Hope, a nonprofit organization that provides information and support to cancer patients who risk losing their fertility to cancer treatment. Martin, who had an aggressive breast cancer that required aggressive treatment, had planned to freeze her eggs but learned eggs don’t freeze as well as embryos, so she had fertility treatments and preserved 12 embryos prior to lumpectomy and chemotherapy. Following all of her cancer treatments and five years of Tamoxifen suppression, she can try to conceive using the frozen embryos. She will be 40 years old.
One month after her diagnosis, her younger sister was diagnosed with the same aggressive breast cancer. Neither woman has the known breast cancer gene mutations, nor do other family members have breast cancer. Martin’s sister had both breasts removed and followed with chemotherapy. Martin had her right breast removed and both breasts reconstructed, and will likely have both ovaries removed in the future to completely suppress estrogen production and prevent tumor recurrence.

Young women with breast cancer face difficult treatment decisions that are further complicated by such issues as blossoming careers, preservation of fertility and caring for young children while in treatment. Single survivors wrestle with telling a potential partner about their cancer and issues of intimacy. The Pink Ribbon Cowgirls offer social outlets where young breast cancer survivors can meet and share support, ask questions and get answers. For the young women of Austin, they’re nothing short of the cavalry.

Support Resources

The Breast Cancer Resource Center of Austin
A centralized source of information, education and support that enables women to be active, knowledgeable participants in their healthcare. The center is open to the public and free of charge.
The Breast Cancer Resource Center
900 E. 30th St., Ste. 108
Austin, TX 78703
512.544.0900 or visit www.bcrc.org

The Pink Ribbon Cowgirls
A social network of young breast cancer survivors. This group specifically addresses the needs of young women 18-44 who develop breast cancer. The program is fully funded and supported by the Breast Cancer Resource Center of Austin. For more information on the organization, to join the social networking group and to learn more about activities and events, contact Runi Limary, director of young survivor services at 512.544.0907 or runi@bcrc.org.