BREAST CANCER AWARENESS: BRCA2 & LIFE

I'm sorry this interview has taken so long to publish.  Yes, I know, October - and Breast Cancer Awareness month - are almost over.  I am the Queen of the Procrasti Nation and I seem to have some very loyal subjects! :) 
That said, I have a friend named Angie who agreed to let me ask her some personal questions about some things that have happened recently in her life. Things that would send most of us to a dark, scary place if they happened to us.  Angie's been lucky in that she, herself, has never had cancer although her mother died from breast cancer and her maternal Aunt Julie had it as well, although her aunt did not have the BRCA2 gene.  However, Angie and her sister both have the BRCA2 gene which gives you an 87% chance of having breast cancer as opposed to the 7% chance the rest of us face.  She's gone through the emotions, the ups and downs, the questions and, ultimately, the decision to have her breasts and uterus removed to prevent breast or ovarian cancer from striking her life.  Here is the interview she graciously agreed to:

M&T: What made you decide to get tested for the BRCA2 gene?

Angie: This is a little crazy, but at my last "annual" when my Dr was doing the breast exam, she commented on how dense my breast tissue was which made it SUPER important for me to do the self exam regularly. I asked if that would be a problem if I ever wanted to get implants because the girls where heading south, and she kind of jokingly said that with my family cancer history, I should get tested for the BRCA gene (which stands for BReast CAncer) and if I tested positive I would basically get a boob job on my insurance's dime. When I left the appointment I called my sister and asked if her Dr had ever suggested getting tested. Her Dr hadn't, but she was going the next week for her visit and said said she would ask. Her Dr said she would absolutely recommend getting tested. My sister tested positive which then made it more important for me to get tested and after some prayer, I decided to do it.

M&T: What was your immediate, emotional response when you found you had the gene?

Angie: It was very surreal. I remember thinking prior to the test that it might be awesome to get new, young, breasts. When the test came back positive, the reality of the situation was anything BUT awesome. The gene increases the risk of breast cancer from the 7% chance we all have to an 87% chance. They are basically saying that it's no longer IF you get breast cancer, but WHEN. It also increases the risk of ovarian cancer to 57%. I think I was mostly in shock for the first couple of weeks.

M&T: Whom did you instinctively turn to in those first hours, days, weeks as you dealt with this new knowledge and why?

Angie: The people closest to me were such an amazing source of comfort and strength. My husband was absolutely my rock. My sister, who had already tested positive, and could uniquely understand exactly what I was going through. My family and closest friends. I knew that this was not something anyone should go through alone. I needed prayer. I needed wise counsel. The direction that the medical community was HIGHLY suggesting was extreme to say the least. I needed to know that even though I had to walk this path, whatever decision I made, I did not have to do it alone.

M&T: Why did you decide to have the hysterectomy and double mastectomy?

Angie: The first two months I had extensive testing. MRI and ultrasound of the breasts, internal ultrasound of the ovaries, extensive blood work looking for anything out of the ordinary...NOT FUN. I felt a little humiliated by the whole thing and this was the testing they would want to do every 6 months so that anything abnormal could be detected early. It wasn't just that. The more I researched, the more I prayed, the more I got counsel from those I trust (who were also getting counsel from friends and family in the medical field), the more I knew that I wanted to take the potential for breast and ovarian cancer out of my life's future.

M&T: Did you come to this decision on your own or did you talk to your family?

Angie: LOTS of conversations with family and friends!

M&T: How supportive were they?

Angie: Everyone was beyond supportive. Those who initially were not so sure I should take such a drastic step, all came back to me and said they thought I should go this route.

M&T: Your doctor?

Angie: To my doctor(s) there really was no other option. My sister experienced the same thing and she has difference insurance. I was truly blessed with the surgeons I was referred to, which was so helpful as I moved forward with my decision.

M&T: What information did he/she give and how helpful was it?

Angie: I was actually sent to a genetic counselor for the testing. She explained everything in great detail prior to my being tested, down to how the mutation of the gene happens. She also explained all that might be in my future if I decided to get tested and the test was positive. The information I got from her was extremely helpful. I understood what was going on in my body, what the options were for me and why.

M&T: Did you do an Internet search on the information your doctor gave you?

Angie: I did! I would say for the most part it was helpful. I liked finding other people who had experienced the same thing. There is a lot of information out there! Probably the first time I got really scared was when my sister's doctor had given her a website that had pictures of reconstructed breasts. The site was password protected specifically for women who would be having mastectomy and reconstruction. Those poor women! Some of them did not have great results and it was often because they had cancer - the chemo, the radiation, the damage to the tissue caused issues with the reconstruction. I just kept thinking, I'm going into this with healthy tissue, I have a great surgeon, I'll be fine.

M&T: Did that help or make things worse for you?

Angie: I think it helped ~ it just felt good to feel a little proactive since I felt a little like I was on a runaway train. Gathering information was at times overwhelming, and I knew that I had to be careful because not all of the info on the Internet is accurate.

M&T: Is there a site or sites you would recommend to others?

Angie: The most helpful site wasn't for the breast cancer issue, it was for the hysterectomy. The site is hystersisters.com and I was on there many times a day after my hysterectomy. It is a great resource. There really wasn't any one great site I found for the brca2. I did go on youtube and searched for tram flap reconstruction - oh my goodness! Glad I did that after my surgery. I was so sore and also couldn't get my brain around how it was actually done (even though my Dr had explained it)...not something to watch if you have a weak stomach!!!

M&T: What was your first post-surgery reaction?

Angie: I have a little trouble with nausea post-surgery. They tell you to let your anesthesiologist know if you have any issues and they give you something for it. Never really helped me! Such a bummer to toss your cookies when your abdomen has been cut open and abdominal muscles moved! In general, post-surgery is just hard. Your body has been traumatized. I found that my support system post-surgery was invaluable. You have to let people help you. Also, super important to take your pain medicine. I thought the medicine was the cause of the nausea and so I tried to take as little as possible. Come to find out, the pain was causing the nausea. The doctor told Pep to set timers to insure I took the meds at the proper time. Once we did that, the nausea ceased. I think I wanted to be so strong, and I didn't want to be dependent on pain meds. Only made that mistake once ~ unfortunately that "once" was for about a week!

M&T: How did your first post-op visit go?

Angie: Post-op was important for me. There are so many questions that I didn't know to ask before surgery - all of the is "this" normal, the way something feels or looks. I was so weak. There was really no grid for what to expect, so seeing the doctor and being assured that "all is well" was very needed.

M&T: How is your health today? Are you as active as before the surgery?

Angie: It has been a year and ten months since my 1st surgery. Recovery was a long process. Whenever I was in pain or discouraged by my progress Pep would say "Next year at this time this will all be behind us." That helped at the time. It took longer than I wanted, so I just had to be patient. I am in great health today. I started working out again this past March and it made all the difference in the world. I could barely do anything when I started. EVERYTHING was hard, even walking to the car. The thing is that the real progress was made when I started exercising. Important to note that I had some complications and I waited to exercise (work out with weights, etc., prior to that all I did was walk) until the doctor gave me the green light.

M&T: Really nosy question for who are couples facing this decision; did this bring you and your husband closer or did it strain things for any length of time?

Angie: I think the answer is both. It was a hard season. Pep did everything. I lived in the recliner. There was no physical intimacy for quite a while. At the same time, Pep did everything, I needed him in a way I never had before, and he rose to the challenge, emotional intimacy on a whole new level.

M&T: Any lingering problems from the surgery?

Angie: I have a "bulge" in the lower abdomen. It is uncomfortable, with a pain on the right side. They think a nerve may have been damaged and there is nothing really that can be done for it. It is also much improved since I started exercising. There was a time that I couldn't stand for any length of time because of it, but now it is rare that I have to get off my feet because of it. The skin on my breasts and most of my abdomen is still completely numb. They say the nerve endings may find their way back or they may not so this may be it. I have also had problems with pain during intimacy since the hysterectomy. We are still trying to figure that one out!

M&T: Would you do it all again, given what you know now?

Angie: There are times when I think what I did was crazy. "What was I thinking" kind of thing. This is usually when I'm frustrated by the "lingering problems." When it all comes down to it though, I know I made the right choice, so yes, I would do it all again

M&T: Give us your three best pieces of advice for others who may be facing this decision.

Angie: ~Don't be afraid to ask questions, lots and lots of questions. I wish I had asked more questions!
~You really do have time. I think I felt a pressure to make the decision right away. I probably would wait a little longer if I had it to do again. Let them monitor me a little longer, although, in the end I would have made the same decision.
~Listen to You. What do you think? This is something that you have to do, no one can do it for you. When it gets down to it, it is your body. Listen to the still small voice inside, and trust that it is the Holy Spirit guiding and directing you.

OCTOBER ~ HEALTH AWARENESS MONTH

You know, our health is nothing to mess around with.  I know, some of us are disgustingly healthy, over-all; and, I know, some of us are crazy hypochondriacs (or afraid of becoming one!) but we need to educate ourselves about things that can seriously affect our lives.  As in, end our lives or, if you're lucky, just change them in a drastic way.  To find out which month of the year focuses on which health issue, you can visit the PCI Health Training Center's Health Awareness Monthly Calendar for more information.  They'll also give you links to each site that can educate you about the specific issue that may have touched your life.

I have two issues that have, in a very small way, touched my life so October is the month for me.  The two issues celebrated in October (yes, "celebrated," you'll understand why as I go on) are for Spina Bifida Awareness and Breast Cancer Awareness.  Neither one have affected me, personally, but I'm friends with those it has.  One has the BRCA gene (which guarantees an 87% chance of having breast cancer and over a 30% chance of having ovarian cancer) and the other friend has a child born with Spina Bifida. 

I'm going to ask interview-style questions of each lady and post them here this month so you'll get at least two more posts before the month is out.  The first one will be for Breast Cancer Awareness.  This can affect both men and women (yes, men, you can get breast cancer, too. Be vigilant!) but my focus in the interview is (obviously) going to be more toward the feminine POV.  There are things you can do and places you can go to get information on either of these life-changing issues and I'll try to have links to them.  One place you can go to support research for breast cancer is Harry & David, a site that specializes in pears. Yes, pears! They have special ones for the month of October to benefit breast cancer research, chocolate dipped pears that have been dipped in two blends of chocolate, one of them pink. (droooool!)  If you know someone you'd like to show support for, this is a good way.  They're a little pricey, but, remember, 20% of the proceeds from these particular pears go to breast cancer research.

Not a bad way to be extravagant OR show your support!

(stay tuned!)

September Is Ovarian Cancer Awareness Month

Several posts back, I did one about cervical cancer and it's link with the STD HPV.  Well, there's another cancer women can get that can be easily missed by your gynecologist. That's because there's no real test for it and having a "good" female exam doesn't catch it.  Getting a colonoscopy done doesn't catch it.  Having your gyno catch/find uterine or ovarian polyps and saying "We'll just watch them to see what happens" also doesn't "catch" this cancer.  It's ovarian cancer and it's even more of a killer in women than other types of cancer precisely because there's no specific test for it.  You have to be on top of your game, and pay attention to your body and what it's telling you, to even know that "something's not right" and force... yes, force your doctor or gyno to take steps to check. This is not a cancer to mess with or take lightly or even think that, because you're young, you won't get it.  Cancer is  no respector of age.
My cousin is a survivor of two types of cancer; leukemia and a type of cancer that caused doctors to have to remove her tongue and replace it with tissue and skin grafts from her arm. They told her she would never be able to speak clearly again, it would just be a lump of flesh in her mouth. Today, the only thing she can't do with the "lump of flesh in her mouth" is stick her tongue out at you. She speaks quite clearly, thank you very much! She's only about nine or ten years older than me.
A friend of mine got tested for a specific gene, called the BRCA2 (or Breast Cancer 2) gene, and found she has it. This gene will guarantee you're going to get breast cancer and, I've learned, most likely ovarian cancer.  Because of this, and several other events that occured, she opted to have a double mastectomy and hystorectomy followed by reconstructive surgery.  She's right around my age. 
Yeah, but I'm way younger than you. I won't get cancer!
I know of a young man in a sister church down in San Diego who is only in his teens.  He got cancer and had to go through chemotherapy. Praise God, he's in remission.  But, remission doesn't mean he's cured. It means, for now, he's beaten cancer. But he's got to have regular check ups to ensure, if it does return, they catch it in time to treat him again.  He doesn't know if or when it will happen.  He just prays and relies on God.
I recently met another woman who has been through ovarian cancer. Her name is Diana Jewell and she's a pretty amazing woman in quite a number of respects.  She has... well, let's call it "started a movement" to get women to understand and love their gray hair. You can learn all about her and her "movement" here.  But she wrote an article about her ovarian cancer and has agreed to let me share it with you.  So, from her own lips (or fingers... whichever), here is Diana's story.

It’s time to remind you again. Last year’s article (which stayed up the whole year) did "get through" to some. But not as many as I had hoped. Time to try a different tactic. One that is personal.

But, first, why be aware at all? Well, for one thing, if you are aware of the symptoms of this deadly disease, you stand a better chance of early diagnosis. If you are aware, you can convince a friend, mother or sister that maybe the persistent bloating she feels isn’t "normal." If you are aware, you can help spread the word. Ovarian cancer doesn’t strike many women in the grand scheme of things. Only about 22,000 women in the US and 60,000 in Europe each year. What are your chances, really?

Had I been aware of Ovarian cancer, I would not have thought mine were very high. I didn’t know the symptoms, never gave a thought to the disease at all. I remember going to a luncheon once where Liz Tilberis, the former editor-in-chief of Harper’s Bazaar, was speaking. She was fighting the disease at the time. I remember listening sympathetically, but feeling very relieved that I had just had a "good" gynecologic exam. Liz later lost her battle with the disease.

Flash forward a few years. My book, Going Gray, Looking Great! had just hit the bookstores. I was preparing for my first personal appearance. It promised to be an exciting summer ahead. A few months earlier, I again had a "good" gynecologic check-up. Then, out of nowhere, I was diagnosed with uterine cancer. It was "as stage 1 as you could get," I was told, and a radical hysterectomy would fix me up just fine. I had it done, and 10 days later was on my feet in front of an audience, describing the glories of going gray. The appearance proved popular, and they asked me to come back. I knew I couldn’t. The day before, I was informed that the lab results came back showing I had another primary cancer: ovarian. My first thought was that my ovaries had already been removed, no big deal, right? Wrong. Cells can remain.

I suppose the days following any cancer diagnosis are a blur for everybody. I remember overhearing one friend ask another, "Does she know how serious this is?" The second friend made a "Shhhhh" gesture and shook her head "no." That made me determined to find out. I spent the weekend cruising the internet. My husband and I will always refer to that as "the weekend from hell." Suddenly, I knew too much.

The doctors told me this was a fortuitous discovery. Because Ovarian cancer has a habit of hiding until it is too late. I didn’t feel very fortuitous. I didn’t feel very fortuitous when they said I would need more surgery (a "staging" operation) and then chemo. I didn’t feel very fortuitous when I walked into the chemo suite for the first time, and a woman looked at me and said "You look like you’ve been invited to a party you don’t want to attend." She was right. I kept thinking, I can’t be here, this can’t be happening. There was no family history. No long lost relative who ever had this. I felt fine. Why did I have it? There was only one answer: Because I did.

I was terrified of chemo. I had to get psychological counseling to even take it. I asked my doctor how long I would have if I didn’t have it. He replied, "Not long at all because I will personally kill you. I can do nothing for 80% of the women who get this disease. You, at least, have a chance."

And those are the facts. Most women are diagnosed at stage 3 when prognosis is poor. Yes, there are survivors among this group, but they are the exceptions. And as remissions turn into recurrences, they are in treatment again and again. This is an aggressive and persistent cancer, already moving on to the next stage at the time of diagnosis.

I made wonderful friends during my time in treatment. Vibrant, active, fun women. We laughed, we giggled, we ate M&Ms together. We talked about fashion and beauty, about great shoes and good handbags. They wanted to know more about going gray (after their hair came back), about hairstyles and cosmetics. My summer of "personal appearances" had turned into tutorials in the chemo suite. We had fun, in spite of the needles planted firmly in our veins delivering the highest toxic chemicals known to man, and we never talked about being sick at all. Sadly, not one of these beautiful, vital women is alive today.

I am sharing this story now because I want you to listen. To think about the symptoms below, really think about them, and if you have any nagging doubts whatsoever, get to a doctor. Life changes when you are diagnosed. To this day, I am tested every 4 months, more frequently if there is any question. It is always stressful. There is always the possibility I will go out of remission. And that’s the only word they use with this disease. They never say "cured." Sometimes I laugh to myself at the inventive phrases my oncologist uses: "virtually cured," "for all intents and purposes." It doesn’t really make me breathe easier, but given the alternative, I’ll take it! And be eternally grateful for the fortuitous discovery.

But should it have to be fortuitous? No. You have the power. You have the instincts. You can prevent a late-stage diagnosis from happening to you.

Ovarian cancer has been called "the silent killer" because there are no symptoms. But there are. A woman knows her own body, knows when things aren’t right. Symptoms can be vague, things we all experience from time to time. We ignore them. Doctors ignore them. But if they persist over a two-week period, the smartest thing you’ll ever do is to have them checked out.
 

• Pressure or pain in your abdomen or pelvis
• Swelling, bloating, gastrointestinal upset
• Frequent urination in the absence of an infection
• Persistent indigestion, gas or nausea
• Loss of appetite
• Unexplained weight loss or gain
• Difficulty eating or feeling full quickly
• Increased abdominal girth or clothes fitting tighter around your waist
• A persistent lack of energy  
• Lower back pain

If you have even one of these symptoms (that’s all I had), and it becomes persistent, see your gynecologist for an internal exam and request a transvaginal ultrasound, a very simple test that can be done in-office. Ask for a blood test called a ca-125 that measures the level of an antigen, a protein molecule, that may be produced in excess when ovarian cancer cells are present. This is not a foolproof test, but if your ca-125 is well outside the normal range of 0-35, it's a very good indicator. A pap test will tell you nothing; it is for cervical cancer only. There currently are no reliable screening tests for Ovarian cancer.