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.