No More Tamoxifen!

I've been struggling with sleep ever since chemo treatment 5 years ago. It didn't get better while I was on Tamoxifen and the insomnia was almost my deciding factor to get off of Tamoxifen many years ago. It wasn't until the 4th year that it got increasingly better with a militant exercise habit and sleep pattern. I was down to just 5 weeks when I had 2 straight weeks of not getting quality sleep. I even tried a sleep aid for 2 days and it didn't help. I honestly believe in quality of life. I emailed my oncologist and she said she would be okay at me giving it a few more days and then stopping Tamoxifen if my sleep didn't improve. I slugged through 3 more days and no improvement. I've been off of Tamoxifen now for 5 days and have noticed better sleep. I still haven't had the most stellar of sleep but better sleep. I'm 4.5 weeks shy of finishing my 5 years. Remember that I added on a few extra weeks because I stopped it here and there prior to surgeries.

I'm happy that I'm off of it and I really hope just 5 short weeks will not make a difference in my chances of recurrences since I've been very good at taking it throughout those 5 years besides during surgeries.

The picture above was when I went to see the Davis Cup in July and I found it very appropriate for this post. Here's a big high five in hopes that my sleep, energy and everything else will improve post Tamoxifen and that here is LONG lasting benefits from taking it.

I'll be Jamming in the 2011 Mamma Jamma

This year's 2011 Texas Mamma Jamma Ride will take place October 1st. Last year I rode 72 miles on my mountain bike. This year I finally have a road bike but got a diagnosis back in May with eroded cartilage in my knee and a torn tendon and tear in my cartilage in my hip. After some unpromising visits to the orthopedic surgeon and physical therapist, I was uncertain if I was even going to be able to bike again without injuring myself further. I was pretty much down in the dumps about the prospect of ever doing much cardio again.

Because of strange twist with fate I ended up seeing a new physical therapist that was able to finally give me hope. I love my new physical therapist! I just rode 30 miles over the weekend and my body feels good. I have my eyes on 27 miles. I don't think I'll push it beyond that because when you think about it 27 miles is actually pretty decent. I don't want to chance my mobility. I've had enough surgeries that I do not need to add knee or hip to my list.

Please consider donating towards my ride. I strive to help others and promise to continue to work hard to make a difference in the lives of others touched by cancer. Can you skip your next latte? Even $5 makes a difference. Many thanks in advance!

Notes from the FORCE conference June 2011

6^th Annual Joining FORCES Against Hereditary Caner

Conference on Hereditary Breast & Ovarian Cancer 2011

Communicating with Family Members

• Family communication is important because it helps family members make informed choices for themselves; people are more apt to pursue testing
• 1. Start off w/objective information from doctors and genetic counselors, 2. find the right words 3. Figure out when and where to tell 4. Who to tell before and after testing
• Possible negative emotions as a reaction to risk information; avoid conflict by communicating directly, do not keep secrets and individuals should feel supported but not overwhelmed by loved ones and their involvement in what is going on

Hereditary Cancer Research Update

• MRI is far more superior than mammogram but bilateral prophylactic mastectomy (BPM) is the most superior of them all
• No further breast surveillance is needed after BPM, best reduction of breast cancer
• Age 35 to 40 for prophylactic salpingo oopherectomy (PSO) for the prevention of both breast and ovarian cancer; surgical menopause is more superior than natural menopause (30% of circulating estrogen w/natural menopause)
• HRT seems safe studies showed no significant increase in breast cancer
• Oral contraceptives prior to age 20 seems to increase risk of breast cancer but no data support if taken after 20
• Lumpectomy 10 year follow up no benefit w/mastectomy but after 10 years better survival rate with a single mastectomy and almost no cancer event after a BPM; apparent benefit of BPM after 10 years
• BRCA+ with early stage breast cancer for those node negative and less than 2 cm would benefit from chemo studies showing after 15 years higher survival rate

Ovarian Cancer Risk Management

• Prevention 1. Nutrition of Mediterranean and anti inflammatory diet 2. BMI higher than 29 causes extra circulating estrogen 3. Exercise lowers the circulating estrogen 4. Less stress because more stress lowers the immune system 5. Vitamin D increase 6. Oral contraceptives for 5 years can give 10 to lifetime worth of protection 7. Child birth and breast feeding
• HRT showed no risk of breast cancer but only improved quality of life; HRT should only be offered if there is no history of breast cancer
• After PSO no conclusive studies for surveillance besides CA 125/ US not needed
• No data to support removal of just the fallopian tubes because it can cause disruption of blood supplies that can cause cysts
• NCCN guidelines to consider transvaginal US and CA125 every 6 months starting at age 35 or 5-10 years before earliest age of 1^st dx of ovarian cancer in family though no evidence that ovarian screening for high risk women is effective
• Risk of Ovarian Cancer Algorithm preliminary data shows cut off for CA125 should be 50 rather than 30 for pre-menopausal women
• Single use of CA125 may not be helpful but use of it long term can be helpful to look for spikes
• CA125 the best tumor marker though there are ongoing test for HE4
• Surgical protocol should include 1. counseling, 2. consider consent for definitive staging surgery if cancer is found, 3. laparoscopy with examination of upper abdomen and pelvis, 4. biopsy of suspicious areas, 5. complete removal of both fallopian tubes and ovaries, 6. consider peritoneal cytology, 7. pathologic microsectioning (2-3mm) and 8.examination of entire ovaries and fallopian tubes
• Advantage of including hysterectomy is that it ensures removal of all the fallopian tubes, simplifies hormonal management (progesterone will not be needed,) decrease risk of endometrial cancer, use of Tamoxifen can increase risk of uterine cancer
• BRCA 1 surgery by 40 and BRCA2 by 45; oopherectomy after menopause is not associated w/decrease in breast cancer

Young Previvors: Medical and Emotional Issues

• Must give time to reflect, state the problem, be objective, find alternatives, figure out consequences and tradeoffs
• Must find support system while making decision
• Face dating, marriage and intimate relationships which can include fertility
• Fertility options: adoption, sperm sorting for male and preimplantation genetic diagnosis
• Relationships w/other relatives of guilt over a true positive or negative and previorship or survivorship
• More media on heredity cancer which can be either positive or negative

Internet

FORCE – www.facingourrisk.org
Among many other valuable resources and opportunities to form connections, FORCE has an online forum for young previvors. In addition, many local chapters have a young women’s group.

Bright Pink – www.brightpink.org
Bright Pink strives to enlighten and empower high-risk individuals to take control of their breast and ovarian health by providing education, support and a sense of community for a better, brighter future. Their PinkPal Program is a one-on-one supportive resource for young women at high-risk for breast and ovarian cancer.

Sharsheret – www.sharsheret.org
Sharsheret is an organization supporting young Jewish women and their families facing breast cancer by fostering culturally-relevant individualized connections with networks of peers, health professionals, and related resources. Their Link Program connects young women at high risk of developing breast cancer with volunteers who are similarly at risk and have offered to share their own experiences.

BRCA Umbrella - brcaumbrella.ning.com
BRCA Umbrella is an online support group community bringing together those at high risk for breast and ovarian cancer and providing a space to share information and personal stories.

Facebook: BRCA Sisterhood – www.facebook.com
This Facebook group of almost 1,000 members provides an opportunity to connect with other previvors and survivors, ask questions, read what others have posted, and find support.

Books and Media:

Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene by Masha Gessen. Boston: Houghton Mifflin Harcourt, 2008

Eating Pomegranates: A Memoir of Mothers, Daughter, and the BRCA Gene by Sarah Gabriel. New York: Scribner, 2010.

In the Family. by Joanna Rudnick. Chicago: Kartemquin Films, 2008

Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer by Joi L. Morris and Ora K. Gordon. New York: Prometheus Books, 2010.

Pretty is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny by Jessica Queller. New York: Spiegel & Grau, 2008.

Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port. London: Penguin Books Ltd, 2010.

What We Have: One Family’s Inspiring Story About Loss, Love, and Survival by Amy Boesky. New York: Gotham Books, 2010.

Resources:

MRI Financial Assistance Program for young women at risk of breast cancer through Right Action for Women which is a Christina Applegate Foundation. Women must be 45 or younger w/family history of breast cancer or tested positive for BRCA mutation. Any women meeting these criteria are qualified to apply, regardless of insurance status. Call Patient Services Inc at 1-800-366-7741 to get a program application. The amount of assistance granted is determined based on the financial need.

Other helpful links through Christina Applegate’s Foundation www.rightactionforwomen.org

Informed Medical Decisions will do genetic counseling over the phone. They will accept insurance but $375 w/o insurance.

CLRC is Cancer Legal Resource Center 866-THE-CLRC or www.cancerlegalresourcecenter.org

Negative BRCA Test www.negativebrcatest.com to learn more about a negative test result. $100 per hour though

Some Big Guns

Wow, this picture makes me look really overweight. LOL! Maybe I should have cropped it to waist up? Well, I'm working on it. Can we say that the camera adds 10 lbs so it really looks like I'm 20lbs over my college weight? Sigh... I'll explain why I'm using this picture. Just keep reading.

Anyway, I digress. The above picture was taken at Universal Studio in Orlando. I was there for the FORCE conference and arrived a day early to check out Harry Potter. FORCE stands for Facing Our Risk of Cancer Empowered which is for hereditary breast and ovarian cancer. Back in 2007 I finally got tested for the two known mutations to cause breast and ovarian cancer. This test would help me decide whether or not to have a prophylactic mastectomy. A positive result of the BRCA1 or 2 gene will increase risk of cancer in the other breast and ovarian cancer. My test came back inconclusive. I was BRCA1 with a variant of uncertain clinical significance. This means I may or may not have the gene. This variant was seen in a total of 3 Asians (I'm the third) making it a small sample population. This is the reason why I'm a part of the ACLU vs Myriad case because Myriad, the company that does the testing, holds a patent on the BRCA1 and 2 genes. No further testing can be done until the patent is uplifted. There for no further testing of my variant to truly know if I'm positive or negative. If you recall I've been treating myself like I'm positive for the mutation.

I meet some big guns at the conference. 1. Dr. Steven Narod is the Canada Research Chair in Breast Cancer in Toronto. He works in the Familial Breast Cancer Research Unit. I was fortunate enough to have some one-on-one time with him and ran my situation through him. What he told me surprised me though it's something my current oncologist and gynecologist have been telling me: It doesn't seem as if I have the BRCA1 mutation. I love my oncologist and it's not that I didn't want to believe her but I guess I'm in such a proactive mode that I would err on the side of being precaution. Dr. Narod said that most variants of uncertain clinical significance is negative. My family history isn't strong enough to convince him that I'm positive. (Even with my mother's mysterious family history.) 2. Dr. Karen Lu is at MD Anderson in the gynecologic oncology unit. I also ran my scenario by her. She doesn't feel as if I have the mutation either, even with my mother's mysterious family history. Though my mother had a hysterectomy about 15 years ago and who knows if that lowered her incident? We will never know. 3. Dr. Diljeet Singh is the Co-Director of the Northwestern Ovarian Cancer Early Detection and Prevention Program in Chicago. She doesn't see me as a clear BRCA1 mutation.

So..."I feel as if there is a cloud over my head." I really want to know for sure but I guess we won't know for sure, at least anytime soon with the patent in place for another 5 years and the entire case can take up to another 4 years. I guess I feel some relief but the key word is some.

I spoke more with Dr. Lu because my oncologist wants to do something with my ovaries since I'm estrogen receptor positive. Dr. Lu said the ovary removal or suppression would be to treat me for a breast cancer recurrence NOT ovarian cancer. I have the same risk as anyone else out there to develop ovarian cancer. She recommends medically induced since it's reversible like Lupron to shut down my ovaries temporarily.

I will post notes from the conference once I write them up.

One More Bottle

The count down is one! I officially paid for my last bottle of Tamoxifen and it comes with a three month supply. So...this is my last bottle. I finish up end of August and I can't wait!

Today is also National Cancer Survivors Day. I am so thankful my original surgeon decided to just remove it since it doubled in size in just a few months even when my mammogram and ultrasound came back negative. She's the one that caught my cancer at stage 1. I am so thankful for my oncologist who came to meet me on her day off and that I think I was one of her younger patients when she first started being an oncologist. 5 years ago this month I finished up Taxol, a type of chemo. I've come a long way baby!

So today I also think about all the women we've lost along the way and so thankful to spend time with those that are still here with us.

Changed the title of my blog

As of May 22, 2011 I've changed my blog from Conquering Cancer to Diagnosed w/Breast Cancer at the age of 28. There are several reasons for this change. I find survivorship, especially in younger people, to be more challenging sometimes than the actual treatment. During actual treatment you're on the go on the go. It's post treatment where you have to access your "new normal" and every ailment needs to be taken seriously. Of course every ailment is now blamed on my chemo and Tamoxifen.

Here's a little update on my health. January MRI showed no evidence of disease which is fabulous. My tentative BRCA mutation is always in the back of my mind too. My last ultrasound back in October showed cysts but nothing of the ordinary. My tumor marker CA125 came back low too.

All these are wonderful news in the cancer world but I was still having pelvic pain on the right side and my knee still wasn't right since I started training for the Danskin last spring. I finally went to PT and they thought it was my IT band. After a few sessions and me testing it out by running on it but we still got swelling I was ordered an MRI. (Thankfully w/o contrast.) I saw my oncologist and complained about my pelvic pain. She ordered another pelvic ultrasound (the first one this year) and ordered an MRI of my right hip. She did say it, but I'm sure she thought it could have possibly be mets to the pelvic bone.

Two MRI's and an ultrasound later I was diagnosed, thankfully not cancer, but something possibly debilitating. I have grade 4 (just like cancer there isn't anything higher than 4) chondromalcia of the patella. It's the medial term for bad cartilage of the knee cap. Basically I have bone on bone. My right hip shows a probable tear of my labrum which means I have a torn cartilage in my hip. I also have some tear in my side muscles in the hip. My ovaries shows cysts but nothing out of the ordinary.


So...that's a lot of information. Grade 4 chondromalacia of the patella is bad news. No more running or high impact exercises for me. I went swimming this weekend and experienced some swelling. I think I need to do no cardio for a few weeks and then try out swimming and cycling again. It seems as if I can cycle but I'll need to modify and probably cycle less and shorter distances. Besides that and more PT, I have few options. Knee surgery is the last option. I can have cortisone shots but I rather wait on that too. I'm even more serious about losing those last 10 lbs that I gain from chemo/Tamoxifen. A knee brace may help too. So today I'm off the gym but to do upper body machine weights only. Yes, all this is crappy news for a 34.5 year old but I have to stick to my proactive mind frame as what I did for my cancer diagnosis. Same thing with my hip. PT is the best thing for it and hip replacement surgery in the future at the worse case scenario. Thankfully I spoke w/ a friend and she said her dad recovered well from it.

I do feel broken. There are many factors that may have contributed to this but I always think: did chemo/Tamoxifen make me more suseptible to all this? I'll never know but I know this is common in athletes. I'm not sure if I call myself and athlete but I am active. I'm sure my sprain knee when I gain all that weight after treatment didn't help or when I fell on it biking or my days of running or my ill fitted mountain bike. Women in general are more susesptible to it because of our wider hips. I never had a baby but I do have birthing hips. Anyway, I'm not going to go there. Hindsight is hindsight. I can only move forward and things can always be worse. Remember to treat your body like a temple!

Post GRAPHIC V Art Bra Runway Show 2011

GRAPHIC V was April 23, 2011 this year. This is back stage of the girls before the show. Don't they look like they are having a blast? I'm so proud of them and so proud of them for making the Pink Ribbon Cowgirls a successful networking group for young women in Austin!





This is my model wearing my Napa Valley bra that made the runway this year! Woohoo!


I'm like a proud mama! This is my Pink Ribbon Cowgirl!

This year was smooth, fun, empowering and about strength. I'm so proud of all the committee members that put so much work into this.