My life with the BRCA 2 gene, and how I got there.

Angelina Jolie wrote an eloquent, well written op-ed piece in the NY Times today “My Medical Choice”, that really inspired me to share my story and tell you what it was like to be told you have the BRCA gene.  If you are familiar with my site you know that I will talk about anything- nipples, mastectomies, anything! But I have to be honest I have been a little fearful and reluctant to share my gene status with the whole world. Talking about this makes me more emotional and upset than any other breast cancer subject. To have gene testing it is a blessing and a curse. This is such a complex issue, and I get angry that anyone has to go through this in the first place. But on the other hand, what an advantage it is to know you have the gene, and to be able to possibly prevent getting cancer.

My family had no idea we had the gene, or really much about the gene until I was diagnosed with cancer at 33. I remember watching the evening news one day where they mentioned that scientists had isolated 2 genes that caused Breast and Ovarian Cancer. I didn’t think much of it, just thought it was a great advancement for science. My grandmother had cancer at age 80 and 85, and my mom has had several suspicious lumps removed, but no one suggested that I get tested for the gene until I was diagnosed. It took 2 months to get the results (which is not normal- it’s supposed to take 3 weeks) but I was a little occupied with chemo so it didn’t bother me.  Once I was told that I had the BRCA 2 gene, I was actually kind of relieved. I had something to “blame” the cancer on, and it made my decision to get a double mastectomy not easier, but it reassured me that I had made the correct decision.

Honestly, I am in awe of women like Angelina Joile- because the amount of courage it takes to have a double mastectomy when you don’t even have cancer- is a whole new kind of brave.  But she did the right thing- she thought with her head, but also with her heart. She put her health and her children above her fear and self image. And she did the right thing- I can’t say that enough.  BRCA 1, is nothing to mess around with- I just lost a 35 year old friend who had BRCA 1, and BOTH her sisters are fighting cancer as we speak.  Some of these breast cancers are impossible to beat- the only thing we have is prevention. We have to do our darnedest to prevent getting cancer in the first place. Make our bodies as inhospitable to cancer as possible. As Kris Carr, the Crazy Sexy Cancer lady says- it’s our “God Pod”. Prevention has to come from many angles- surgery, nutrition, hormone suppressing medicines like Tamoxifen. Once you have breast cancer, you have a 25% chance of recurrence. I don’t like those odds.  In Joile’s article, she states that she went from a 87% chance of Breast Cancer to a 5% chance just by having a double mastectomy. And once she has her ovaries out, her estrogen in her body will drop and that will reduce her risk of breast cancer as well as Ovarian.  Did you know that only 1 out 4 women beat Ovarian Cancer?And there are no real symptoms to Ovarian cancer or a clear cut blood test; just “markers” that can be elevated.

I think the most helpful thing I can say to someone going through this and faced with the same decision is to tell you what I was thinking and what I did. Everyone has a different set of circumstances that influence their decision. I was married, already diagnosed with Estrogen positive breast cancer (the easiest to treat), Stage 2B, and it already spread to my lymph nodes, and I didn’t want kids. Here are some things that go through your head when dealing with the BRCA testing and results.

1. The hardest decision was deciding to get a double mastectomy. But for me it was all about trying to prevent my cancer  from coming back. And after surviving 4 months of chemo, (hell) I never wanted to go through that again. I wanted to give myself the best possible chance of putting cancer behind me for good.

2. Kids- I have a 50% chance of passing it on to each of my kids. If they are girls- it is far worse for them. If it’s a boy- they have a higher chance of breast cancer and prostrate cancer than the normal man. What is worse than fighting cancer? passing it on to your kids and watching them go through this. Which is why we never told my grandmother, she would have blamed herself for passing it down to her kids and grandkids. And it’s not like she could have prevented that.

3. Family- we are such an independent thinking society here in the US, but getting testing and even just the simple fact of finding out your results will affect the family around you. Even the extended family that you are estranged from. They may not want to know you got tested. And they may not want to know your results. It’s hard to respect their wishes if they know you are getting your ovaries out. How are you going to explain why you had that operation if you are not positive for the gene. See my point? tricky…

4. Money & insurance- Thankfully my insurance covered the $3,000 test and all of the operations like my preventative oophorectomy (removal of ovaries) but they did so because I already had cancer. In my moms case they will cover her preventative double mastectomy but not the reconstruction- that is about $8,000. I think the insurance would rather take the 85% chance of paying for her chemo & radiation. And since I have the BRCA 2, my relatives only had to get the test for #2, which was only $300, not $3,000.

These are some of the things I had to contend with and I still think about. Even within 5 years since my diagnosis- things are changing for the better reconstruction wise. Whatever your decision is, know that you are not alone- that the 5% of us who have the BRCA genes are here for you.



What Cancer Patients should Eat by Chef Gloria Bakst

Gloria B. is a personal Chef in the Boston area who has experience cooking for cancer patients undergoing active treatment. She also is a personal chef to non-cancer patients who just want to change the way they eat, lose weight, improve your overall health.

Here is a blog post from Gloria for CancerVictory! Thanks Gloria! Karen

Here are some suggestions from a Cancer specialist (Donald Yance) about foods
during Chemo…

What to eat during chemo
•    Rule #1 hydrate – drink coconut water with Power or Vital Adapt straight or dilute with a herbal ice tea (this tastes much better very cold)
•    The day of chemotherapy and the day after eat lightly – studies have shown that a modified fast for one or two days significantly enhances the effectiveness of chemotherapy.
(Lizzia Raffaghello*, Changhan Lee†, Fernando M. Safdie†, Min Wei†, Federica Madia†, Giovanna Bianchi*, and Valter D. Longo, Starvation-dependent differential stress resistance protects normal but not cancer cells against high-dose chemotherapy, www.pnas.org_cgi_doi_10.1073_pnas.0708100105 PNAS Early Edition)


Make yourself Fresh juices with a juicer, fruit and / or vegetable. Cabbage, kale, celery, watercress, parsley, cilantro chard, beet tops, beet roots, carrots, burdock root, jicama, apples, oranges, and others as you wish. Leave the peel on the citrus and put the whole lot through the juicer. Dilute with water as desired. Smoothies made with fresh fruit, organic goat or sheep yoghurt, soy / rice / oat / almond milk and Greens Plus or other equivalent product. Also add whey or rice protein powder. For extra nutrients you can soak a handful of nuts overnight in water, whirl this up with everything else or put in a spoonful of almond butter. Purchase the young green or white coconuts and drink the liquid inside – one a day. Eat the pulpy flesh as well, and use it in smoothies and juices. This is great if the gut lining is damaged from chemo. (If this is for Estrogen Positive breast cancer, eliminate soy)

Apple sauce, soaked and poached dried fruits, mashed banana with soy / rice / oat / almond milk. Lots of room temperature water, sipped slowly through the day. Broths and pureed soups. If you can get organic beef bones with plenty of marrow and cook them up to make stock. This will help build back the blood cells and give overall strength.
Poached or soft boiled eggs. Poached fish in a good broth / stock. Oatmeal, millet porridge, congee (cream of rice), barley, quinoa

Bone Marrow Soup

BONE MARROW SOUP (to nourish the blood)
•    The best bones to get are organic, hormone free, antibiotic-free, beef or lamb bones. •    Cover the bones with pure water, add the soup herbs and place over low medium heat. Slowly bring to a simmer and let it simmer for about 1 to 1 1/2 hour. •    Add vegetables like beets, celery, burdock root, carrots, kale and whatever else you’d like. •    Optional: shiitake mushrooms, garlic, ginger and herbs according to your taste
(parsley, rosemary, thyme etc …)

For 1 big pot of soup (about 4 quarts) – this is about 4 days’ worth of soup.  When soup is done it maybe pureed in food processor for a smooth consistency, if desired.

As a personal chef, I used much of these recommendations for a patient going through cancer.  The bone marrow soup was very helpful for her and she found having these foods she didn’t get nauseous with the chemo.

Gloria Bakst, Chef Gloria B,


Happy Thanksgiving! What I am Grateful for…

Happy Thanksgiving Everybody! I am so grateful for all of you, for my amazing husband who has been so supportive, for Olga, my dear friend and right hand woman. And for my family and friends. And for my health.  I am very lucky indeed. You are all riding this roller coaster of a life with me- through good times and bad. And I am learning lots of life lessons. Sometimes it;s not fun, but you all make the landing a little softer. So take my word for it and Seize the Day! Carpe Diem! Hug your family and friends and let them know how much you love them. Happy Thanksgiving!

Rehab and Physical Therapy after Cancer treatment & surgeries!

I was reading this great article, “Survivors Face a Major Gap in Post-Cancer Care”, on the other day and it brought up a good point, that most of the doctor’s never mention you should go to physical therapy after breast cancer surgeries and or radiation. As a cancer survivor I have to said it SHOULD be part of the regiment. It should be all of the “standard” treatments (like chemo, radiation and surgery)  and then when your all done- physical therapy. I remember being surprised that the nurse recommended that I go for a lymphedema sleeve by a physical therapist. For plane trips and “just in case” I develop lymphedema. I am glad I went- after a mastectomy and radiation, I had T-rex arms- I could barely raise my arms above my head. My chest was tight, so tight it was painful. So not only did I get a sleeve I returned for 8 sessions of physical therapy to get my mobility back. And I am so glad I did! I went to Katrina Brow, at Winchester Hospital who specializes in breast cancer patients and lymphedema.  And I did get my mobility back- thanks Katrina!

Physical therapist Jennifer Goyette provides manual lymphatic drainage therapy to cancer survivor Deborah Leonard. (Rachel Gotbaum for WBUR)

Medical Marijuana & Cancer treatment

I have died and gone to heaven. This past Tuesday, 63% of Massachusetts voters said Yes to Question 3, to Legalize Medical Marijuana. Hallelujah! 63% of my fellow voters must know someone who has a chronic illness like multiple sclerosis or ALS or have gone through cancer treatment. Please don’t take my joy for this law the wrong way, I am not a pot head. But if my cancer comes back or my fibromyalgia is no longer in control by acupuncture and chinese medicine, I am going to get me some marijuana. It helps with nausea from cancer treatment, restores appetite and manages pain. My oncologist even said they have no drug that works as well as marijuana for nausea. Livestrong wrote a quick to the point article about the Positive Uses of Marijuana for Cancer Patients.

Up until now most people have to break the law to use marijuana, but beginning on January 1, 2013, the citizens of Massachusetts don’t have to break the law, they can get a prescription from their doctor.  35 dispensaries will be set up by January 1, 2014 within Massachusetts.

Recently, a friend of mine was diagnosed with metastasized breast cancer that went to her lungs. She was coughing so hard she broke a rib. Now she couldn’t inhale marijuana smoke because of obvious reasons but she could eat it. And completely unrelated, I enjoy baking. I’m sorry but if a friend of mine is going through a bad time and I have access to helping her feel better- I am going to do it.

So thanks Massachusetts voters for giving us a way to help chronically ill patients. I’m so proud of us!

No Pink Ribbons, please.

So it may come as a shock to most of you reading this. (although it can’t be much of a shock if you read my homepage)  This Breast Cancer survivor is not a fan of pink ribbons. And it’s not because I don’t see the value in raising awareness of the reality of Breast Cancer. Women SHOULD know that 1 out 8 women will be diagnosed with Breast Cancer in their lifetime. So they should go for a mammogram and do self-breast exams, especially if you have a family history.

But I have a problem with Pink Ribbons becoming a marketing campaign for companies to promote their products and to sell more because it has a pink ribbon on it. October is now Breast Cancer Industry month. Most of America thinks they are doing a good thing by buying items with the pink ribbon symbol on them. We are all under the impression that the company will give a big chunk of money from the item directly to research. And most of the time that is NOT the case. Or Companies are ironically selling items that contain chemicals that actually cause the cancer they are trying to raise money to extinguish; like makeup and perfumes. (For info on your specific makeups & perfumes and if they are ok to use- look them up on the database)  The Breast Cancer Action‘s campaign Think Before You Pink Campaign helps raise awareness of “pink-washing”.  When a company cloaks themselves in Pink ribbons to sell more product it’s called “pink-washing”. There is also a great documentary called Pink Ribbons, Inc. It’s eye-opening. It’s available on Netflix. Your going to get really pissed off every time you see a Pink Ribbon on a product- because you’re going to know what is behind that. Here is good synopsis of Pink Ribbon Inc documentary by Ms. Magazine. The whole Pink Ribbon industry is a waste of our time, money and devotion.

Pink Ribbons Inc.

So- if you really want to help someone going through Breast Cancer treatment, think about donating your money directly to a non-profit that helps women undergoing treatment with grocery cards or help with medical co-pays. Like  to charities I love, Heaps of Hope or The Ellie Fund. These are local charities in the Boston area, but there are many local charities all around the country that do some real, practical good.  And if you have a friend or relative going through treatment, please refrain from buying us pink ribbon items. We know we have cancer, we are well aware of it! And we also know that you care about us and hate to see us going through it. But here is a list of great items you can give a cancer patient or make them a meal or pay a utility bill for them.  They will know you get “it”. And I am working on finding out where to send money that will go directly to a research foundation that is doing cutting edge research that will hopefully put an end to Breast Cancer. I can’t wait for that day! I hope it happens in my lifetime.


The New Me, The Journey continues for this Cancer Survivor

The more I read, the more I learn, and the more passionate I get. My Dad recently joked that the list of things Karen is passionate about is as long as a super-sized paper towel roll. And I will agree with that. I no longer believe that just because you are predisposed to a particular bad gene- like heart disease or cancer, that your hands are tied and you can do nothing to avoid it.  I wish my Mom, Dad and the rest of world knew what I know now, back before I was even born. Maybe I could have lived until I was 80 (just like my Gram) before I got my first bout of cancer. But that is not the life I have – so I am learning now what is not common knowledge.And I may be turning into a crazy hippie And people may think I am a crazy hippie, but oh well we drive a subaru, so it was inevitable. I recently stayed at my parents house and I didn’t bring any toiletries with me because I now use olive oil to wash my face, baking soda for shampoo and a vinegar rinse for conditioner. (you would think this would cause a volcano like reaction but it doesn’t)  I just raided their pantry and I was all set.

What we eat and what we let our skin absorb- is important. It makes a difference if we are an anti-cancer machine, or a fertile bed for cancer growth. And some of us who have “bad genes” have to be more strict than people with “good genes”. But most of us don’t know if we have good genes or bad ones, so wouldn’t it be smart to just play it safe and eat as healthy as we can, and exercise 30 minutes a day 3-5 times a week? And for Pete sake- Stop smoking!

Here are some great articles and places to start in your journey for a new Anti-Cancer body!

Michael Pollan of course! Although, his take is not necessarily on preventing disease or helping a a sick body heal, he comes to the same conclusions that everyone else does. And he has really interesting articles that delve into the many questions we all have and ones we didn’t even think of!

Rebecca Katz, the culinary expert and chef from The Cancer Fighting Kitchen fame. Let’s just put it this way- it’s my favorite cookbook- it’s already got pages that stick together and it’s only 2 months old. LOVE THIS BOOK! Website has some recipes, tells you when her appearances will be, etc.

Kris Carr, Crazy Sexy Cancer Lady, has a great new website that has recipes, cooking videos,etc. Her Crazy Sexy Diet book is not so much a diet as a way of life. She delves into all topics- everything that we come in contact with; makeup, fragrances, water, shampoo- everything!

The Palette Fund, and Ruth Fehr, Director of Nutrition and Wellness- great website for what to eat when you have a particular side affect from treatment, resource for delicious, nutrition packed recipes and a great resource on what books we should all be reading!


Am I a survivor? Or is there a better word?

So I was having dinner the other night with 2 friends who are young cancer survivors like me and we were talking about the label “survivor”.  We don’t like it. We really have never felt comfortable calling ourselves that. And when does that actually take effect? After diagnosis? chemo? surgery? done with active treatment completely?

One cancer patient we knew said she would rather be called a veteran. It is a war we have been through or are going through. Plus “Survivor” implies that it is all behind us and we are through with cancer. Unfortunately, we are not done with it.  We really have no way of knowing if we are truly done with it. Only time will tell. If we are lucky and it never comes back we still have to live with the disfigurements, the scars, the side affects and the memories of what we have been through. And if it does come back – we are no longer a survivor, or maybe we never were. So what word do you call people that have metastasized cancer and are living with their cancer and fighting it? Survivors? Patients? (we hate that too- we are sick of being labeled sick) How about-Warriors! That is what we came up with for a friend of mine- who is no less a warrior than any soldier. She is definitely someone I would want with me in the trenches.  All of these war metaphors- you’d think I was a gun-totting marine!   I do have to say though, I watched a lot of Mash reruns on TV the year I was sick. I found it oddly comforting, I felt I was in the same boat as Hawkeye and Margaret. I was somewhere I didn’t want to be, doing something I didn’t want to do- and I had to make the most out of it. And that meant making jokes about a not so funny subject. And I happen to love sarcastic, witty humor- so it was my “in-house support group”. The people of Mash knew my pain, they “got me”. Thanks Hawkeye for the comfort. From one Veteran to another.

the cast of Tv's Mash




Now What? A Patient’s Guide to Recovery After Mastectomy

Now What?: A Patient’s Guide to Recovery after Mastectomy by Amy Curran Baker

This is by far not a sexy topic to write about- but like all things CancerVictory, it’s an extremely practical book. My hat is off to Amy Curran Baker for tackling this issue. And it’s a good book- well researched, well thought-out and useful. Amy Curran Baker, the author, thought of everything- she even includes a lymph fluid chart in the back of the book so patients can use this instead of having to come up with something on their own. The author wrote this book after realizing there was not a lot of information out there for patients to read to prepare for a mastectomy. I hope somehow this book ends up in Surgeons hands and that they are passing it out. Or at least loaning some copies to patients! Usually patients are whisked into surgery a week or 2 after diagnosis and they have no time to do any research of their own. But they should be reading this book. Tons of practical useful tips, like what kind of pillows would be good for reclining post-op and what to expect with those pesky drains. Just bringing up things you should think about ahead of time, and tips to make the recovery go a little easier. There are also many personal autobiographical accounts of women with cancer or who just have the gene. They share pretty openly about why they made the decision to get a mastectomy and how their husbands feel about it. This is a great book, and I hope surgeons start to hand it out to their patients!

2 Books that you MUST get for every Cancer Patient

These are 2 books I highly recommend. If you have limited time, energy and money to invest in reading right now- these are the 2 books that are worth your limited resources. Both of these books I have enjoyed reading immensely and they have changed my life.  One is the essential cookbook for cancer patients, survivors and the rest of us who want to prevent cancer. And “Anticancer, A New Way of Life” by Dr. David Servan-Schreiber, this will help you navigate your life and eat right. It also goes a long way to explaining why there is such a spike in cancer diagnosis in the last 30 years. Both of these books are so thoroughly researched and thought out- every patient and their family should be reading these books.