(Programming Note from Shannon: FINALLY getting a chance to post this. I’m sorry for the delay! The picture accompanying this article is absolutely inspiring. A friend of mine shared it with our previvor group on Facebook and I knew I needed it for BRCA World. Strength, perseverance, bravery…all that a mother should be).
(Goodness, I used to love Lauryn Hill’s “The Miseducation of Lauryn Hill.” It was my jam back in the day. “Zion” — the title of this article is a sampling of the lyrics — is one of the most beautiful songs about having a baby. For anyone in a “God, I am blessed to have this child” mood, check out the lyrics.)
As our knowledge of cancer grows, so does our vigilance. We are learning earlier and earlier about our risks. Those of us with long family histories of cancer, are aware from an early age of its potential to strike us. Many of us must make life-altering decisions in our twenties and thirties, when we are still learning to be adults. We are on the cusps of our careers; our families are young, if they have even formed yet; and we are just settling into our skin enough to catch glimpses of who we might become.
Breast surgery is usually the first decision made. For most, it is the easiest to agree to and protects from the most immediate threat. How to guard against ovarian cancer is a much more difficult choice. I know, for me, it is also the scariest. Although the risk of ovarian cancer, in carriers of the BRCA mutation, is lower than breast cancer, ovarian cancer is more difficult to detect. Dubbed, “the silent killer,” it is often not discovered until an advanced stage. It is one of the deadliest forms of cancer among women; and only 20% – 30% of women diagnosed with a late stage ovarian cancer, will be alive 5 years later. There are no good early detection tests. The blood test most commonly used, the CA125, is not very accurate. Many doctors (mine included) prefer not to use it at all, due to the unreliable results. The only true option to reduce our high risk, is a hysterectomy (removal of your uterus) or salpingo-oophorectomy (the removal of your fallopian tubes and ovaries).
For younger women, this means making decisions about your future family and children. It is recommended that these preventative surgeries be done by age 35 – 40 (two of my doctors recommended 35 y.o., but I know some women’s doctors have said 40, as well). With BRCA and HBOC, your baby clock starts ticking faster the moment you become aware of these decisions. Many women feel rushed. They need to not only figure out what they want their future family to look like, but plan when and how they want that family to come to fruition.
There are many considerations for those at high-risk of ovarian cancer. Eggs can be frozen. Children can be adopted. There is even embryo testing that can be done to determine whether you would pass on the BRCA mutation to your child. This is most often done during IVF, when doctors can develop embryos and implant only those that do not have the mutation.
This brings up a sensitive topic in our community. Do you have a moral obligation to avoid passing along the BRCA mutation? I don’t have an answer to this. I look at my son…his wide-eyed pleasure in the world. He was a preemie that could not breathe without assistance; he fought through seizures and a hole in his heart. Yet, he smiled constantly…from the very first day. With tubes in his nose, belly button, and mouth, he smiled. I can’t imagine him not being in this world, and I can’t imagine him having cancer. Does he carry my mutation? I have no idea. Would it have changed my decision to carry him? No. Perhaps that is selfish, but my choice to have him would be unchanged. By the time he is old enough to test, he will know about his risk. I will make sure of it. I am hopeful, though, that there will be a cure. That is why I preach so loudly about it. I need a cure for him, not myself.
Aside from all the choices we face, we must also recognize the risk. Breast and ovarian cancer are, sometimes, estrogen responsive. The influx of hormones during pregnancy can increase the risk of cancer in BRCA mutations (click here, here, and here for studies supporting this statement.) Furthermore, if you have had a cancer diagnosis, you are encouraged to wait, at least, 2 -3 years before becoming pregnant, as it can increase the risk of recurrence.
Having a BRCA mutation, or a strong family history of cancer, means you are faced with a million impossible decisions. Early in my life, I did not know if I wanted children of my own. I enjoyed living selfishly, with nothing to constrain me. I adored other people’s children, and had decided to be the super-cool aunt that was really involved in the lives of my nieces and nephews. As I grew older, my dreams changed, as they so often do. How are we supposed to make all these decisions so young? Our lives change; our desires change; but we are forced to decide the shape of our future. It’s unfair and impossible. It is the high cost of cancer.
Personally, I dream of having another baby. There are so many risks and decisions involved, my husband is not sure he wants to follow that road. I can close my eyes and imagine a time when these decisions are unnecessary. There will be a cure, casting all of our doubts and heartaches aside. This is why we fight. This is why we advocate and educate.
“In a perverse way, I was glad for the stitches, glad it would show, that there would be scars. What was the point in just being hurt on the inside? It should bloody well show.”
― Janet Finch, White Oleander
Last week’s #BCSM chat (click here for transcript) touched on “the invisible scars of cancer.” It’s a great topic, and one that applies easily to those of us facing HBOC. Whether you choose surgery, or have it forced on you, you have visible scars. My scar on my left breast is 4.5 inches long. The one on my right is 4 inches. I have one small scar on each hip and a matching set on my inner thighs (fat transfers and grafting). I like these scars (mostly). I can point to them. They are evidence that I lived through Hell and am still breathing. The ones that lurk beneath the surface are ten times more difficult, though.
When confronted with BRCA, or HBOC, regardless of choosing surgery or not, you develop scars. You cannot point to these scars; no one else can see them; they are invisible. These scars are, often, the deepest and most painful.
My invisible scars are plentiful. People see me, and see a healthy-looking young woman. But I am not. I have wounds that will never heal, ones that I cannot point to as evidence of battle. Cancer may have taken away my fertility. It took away my innocence, and showed me my mortality. These are cuts that do not heal.
I am scared of metastatic cancer. This is a fear that haunts me. We can never again be “normal,” or go back to a time before our blindfold was ripped off and we saw our future. I do not live a single day without thinking about cancer. This, in itself, is a scar.
Once you have surgery, or treatments, and have no evidence of cancer, people believe it is “over.” For us, it is never “over.” Our fear of cancer remains. We worry about the fate of our children, our family. We worry about seeing our children grow and pass each milestone. Surgery does not alleviate this. It helps, but does not heal. These are the invisible scars. Ones we live with and no one ever sees.
What are your scars? What will live with you forever, unseen, even, by those closest to you? Our community is important because only we understand. Our wounds are shared. We cannot, necessarily, heal each other, but we can relate.
Here’s one more quote to end this post. It’s by Rose Kennedy: “It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
Written by Emily Kelley
(Note from Shannon: I know you guys love Emily’s recipes and I do too. Just thought I’d add that I had this last night and it was so very yummy!)
Whole Foods Market
4 salmon fillets
½ cup balsamic vinegar
½ cup orange juice concentrate
¼ cup lemon juice
1 Tbsp. Dijon mustard
½ cup olive oil
Whisk together balsamic vinegar, orange juice concentrate, lemon juice, and Dijon mustard in a medium bowl. Slowly add olive oil in a thin, steady stream while continuing to whisk.
Place salmon fillets in a dish and pour marinade over them. Refrigerate for 1-2 hours. Remove salmon from marinade, reserving marinade. Pour marinade into a small pot and boil to reduce by half.
Preheat grill. Place salmon fillets on hot grill. Grill for 4 minutes, flip fillets, baste with reduced marinade and grill 4-5 minutes longer, until salmon is cooked through.
Baste with remaining marinade and serve.
All foods that are made from meat, poultry, seafood, beans & peas, eggs, soy, unsalted nuts, & seeds are included in the protein group. To get the best amount of nutrients from this group, it is best to eat a variety of foods. The recommended serving amount varies between men & women & different ages, as well. Women, ages 19-30 should have 5 ½ oz; ages 31-50 should have 5 oz; and ages 51 & up should have 5 oz. Men, between the ages of 19-30 should have 6 ½ oz; ages 31-50 should have 6 oz; and ages 51 & up should have 5 ½ oz.
A 1 oz. serving from the meat group is 1 oz. meat, poultry, or fish. One egg, ¼ cup cooked beans, 1 Tbsp. nut butter, ½ oz. nuts & seeds are all equivalent to a 1 oz. serving of protein. Protein rich foods supply B vitamins, vitamin E, iron, zinc, & magnesium. The B vitamins from these foods aid in the function of the nervous system, forming red blood cells, and building tissues. Protein is an important part of having healthy bones, muscles, cartilage, skin, and blood.
When eating meat & poultry, it is best to choose low fat items. Consuming foods high in saturated fat raises LDL (“bad” cholesterol). This increases the risk of coronary heart disease. Many meats are high in saturated fat, so limit how many of those you eat to help keep your cholesterol level in the healthy range. Eggs and organ meats are high in cholesterol, so it’s important to limit the amount of these foods that you consume, as well.
When choosing seafood, choose omega-3 rich fish, like salmon, trout, herring, Atlantic & Pacific mackerel, & Pacific oysters. Eight ounces of seafood a week may help reduce the risk of heart disease. (Unless you are a vegetarian, then stick to nuts & seeds).
Nuts and seeds may help lower the risk of heart disease. They are high in calories, so eat small servings. Also, keep in mind when eating nuts or seeds, those should be in place of, not along with, other protein foods. Vegetarians can get the protein they need by choosing a variety of eggs & milk products (if you eat eggs & milk), nuts & seeds, nut butter, peas, and soy products.
Here are some tips from USDA’s My Plate:
10 Tips – Healthy Protein Foods
The USDA and Choose My Plate provide a number of tips on how to effectively incorporate protein into a healthy, balanced diet. Here are a few:
- Choose lean meat products including roast beef, turkey or low-fat luncheon meats for sandwiches versus deli and regular luncheon meats such as salami or bologna.
- The leanest beef cuts include round steaks and roasts, top loin, top sirloin, and chuck shoulder and arm roasts.
- There are lean pork options such as center loin, pork loin, and tenderloin. Choose these options over other potentially higher fat options.
- The leanest poultry choices are boneless and skinless chicken breast and turkey. Purchase boneless, skinless chicken breasts and turkey cutlets, as they are the leanest protein choices.
- Remove all visible fat from meat and poultry before cooking.
- Avoid frying your meat, poultry or fish. It’s better if you broil, grill, roast, poach or boil it instead.
- Drain off any fat that appears during cooking. Drain fat that seems to be cooking when preparing meats.
- Limit or skip the breading on meat, fish and poultry. When you add breading, you add calories. In addition, breading will cause the food product to absorb more fat particularly during frying.
- Avoid fat sauces and use herbs, spices, olive oil and fresh vegetables and nonfat marinades.
- Replace meat and poultry with fish, nuts and seeds. Fish, nuts and seeds are healthier alternatives since they contain healthy oils.
A little over a year ago, I had a mammogram. I was left alone with my films for a few minutes — what I saw scared me. There were one or two black spots on an otherwise white breast. Knowing very little about mammogram films, I thought for sure the black spots were tumors. The doctor came in and explained the opposite. Bright, white spots, generally, indicate tumors. My heart dropped, but she told me that, despite the way my films looked, it was unlikely I had tumors throughout my chest. My breast tissue, she said, was so dense that they were impossible to read. She called in a second doctor. Neither of them could “read” my boobs. I would require more testing and a doctor, who specialized in dense breast tissue.
Breast tissue density is based on the amount of connective tissue compared to the amount of fat in your breast. The more tissue, the higher the density. Younger women, often, have higher density (which is one reason why mammograms are not encouraged in younger women). Women with high density are four to five times more likely to get cancer than women with low density. It can make detecting cancer very difficult. It is incredibly important that you speak with your doctor about breast density.
There has been a (relatively) recent grass roots movement in the state legislatures to require imaging centers to send a letter to their patients with dense breast tissue, informing them of the additional risk and concerns. Click here to read about this law. At this point, there are twelve states with breast density laws: Alabama, California, Connecticut, Hawaii, New York, Maryland, Nevada, North Carolina, Oregon, Tennessee, Texas and Virginia.
There is a great website/organization that caters to breast density: Are You Dense. If you have any questions about your risk, or what to do if you have dense breast tissue, go to their site. It is very informative. To learn more about the modifications you will need to make to your early detection methods, check out this article in the Huffington Post. Dr. David Katz interviews the founder of Are You Dense about how prevalent and important the issue of breast density is.
The key to being an empowered patient is to understand your personal risk and know your own body. Breast density is one of many factors to consider in your education.
Written by Emily Kelley
½ – 1 cup plain, unsweetened, non-fat greek yogurt
Dash of vanilla
1 tsp agave nectar or raw honey
½ cup fresh fruit
Mix in a dish & enjoy. Or make layers with the yogurt & fruit to make a delicious parfait. I prefer ½ cup for a snack, or 1 cup for a meal. I love non-fat greek yogurt because it’s packed with protein.
One of the greatest benefits of the dairy group are the nutrients they provide, like calcium, potassium, vitamin D, and protein. The recommended serving for an adult is 3 cups a day. It is also recommended that you stick to non-fat or low fat products. Health benefits from dairy include the possible reduction of osteoporosis and also the risk of reducing health conditions such as type 2 diabetes, cardiovascular disease, and lowering blood pressures in adults
Dairy products are all liquid products that come from milk and foods that are made from milk. Calcium fortified soy milk is also part of the dairy group. Milk food products that have little or no calcium, like butter, cream, and cream cheese, are not part of the dairy group.
Some items in the diary food group are:
- All liquid milk: fat-free (skim), low fat (1%), reduced fat (2%), whole milk
- Lactose reduced milks, lactose free milks
- Milk-based desserts: ice cream, frozen yogurt, ice milk, puddings made with milk
- Hard natural cheeses: cheddar, mozzarella, Swiss, Parmesan
- Soft cheeses: ricotta, cottage cheese
- Processed cheeses: American
- All Yogurt: fat-free, low fat, reduced fat, whole milk yogurt
1 ½ ounces of natural cheese, 2 ounces of processed cheese, and 1 cup of milk, soymilk, or yogurt are all equal to a 1 cup serving of the dairy group. Remember to stick to non-fat or low fat as much as possible.