A helpful tool for assessing cancer risk

Good morning, everyone. I just wanted to pop in and share with you all a nifty little tool from Stanford University, called the BRCA Decision Tool. If you are BRCA 1 or BRCA 2 positive, this calculator could help you assess your cancer risk.

According to the Stanford website, this tool: “calculates the probability of health outcomes for women ages 25-69 who carry a BRCA1 or BRCA2 mutation, and who have never had the following: 1) cancer; 2) screening mammograms or magnetic resonance imaging; 3) preventive surgery to remove breasts, ovaries or fallopian tubes; 4) preventive medications such as tamoxifen or raloxifene.

Obviously, you should NOT take this tool’s information as the final word in your cancer risk, but it’s sure helpful and makes it a bit easier to understand your individual risk. I found it very beneficial when thinking about my risk of ovarian cancer. I am BRCA 2 positive and honestly didn’t know too much about the correlation between BRCA 2 and ovarian cancer. I know that my mother had a prophylactic oopherectomy at age 58, but I had no idea when I should start thinking about my own preventative surgery. Obviously I’d wait until after I have kids, but at what age would I be pushing the envelope?

BRCA Decision Tool

The above screencap shows my results. The age minimum is 25 but I am only 22, so I just went with it and pretended I had my mastectomy at 25. I’m breathing a small sigh of relief seeing those numbers. While I still plan to be diligent about screening starting around age 25, at least I can enjoy knowing that my ovarian cancer risk is much lower than what my breast cancer risk would have been had I not done the prophylactic mastectomy.

This tool was brought to my attention at a recent FORCE meeting in Santa Monica. It was a great meeting–the Young Women’s group met for the first time. And I got to see Trisha as well as a few of my blog readers! Incase you’re all wondering, Trisha looks fantastic.

On Thursday I have my two-month post-op appointment with Dr. Festekjian. Details to come, but for now–off to work!

 

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Rachel’s interview with BRCA+ Playboy-girlfriend Trisha Frick, part two

As promised, here is the second part of my interview with Ms. Trisha Frick, girlfriend of Hugh Hefner. I received very positive feedback regarding the first part. As you can tell, Trisha is very open and insightful. She explains her opinions and decisions and is honest about the situation. I am so grateful that she has decided to share her story, and I encourage other readers to do the same. You never know who you’re helping!

And again, I have to note that this interview was very spontaneous and all over the place; it was more of a conversation than anything, hence the random topic jumps. Enjoy!

Rachel: When you got tested for the BRCA mutation, were you worried about insurance?
Trisha: No not really. By that time, the law had passed that it can’t be held against you. I know a lot of women out there are still worried about getting tested because they think their insurance will go up. I got tested through one insurance company, and then I got on my own insurance with them knowing I had the gene. So it is possible. My rates didn’t go up, my deductible didn’t go up.

Rachel: Hopefully in the coming years, more and more people will start to learn about the gene itself and learn about the insurance laws. Do you have any ovarian cancer in your family?
Trisha: No, thank god. But I still get tested every six months.

Rachel: How do they test for that?
Trisha: They use ultrasound and the CA-125 blood test.

Rachel: When you’re older do you think you’ll have an oopherectomy?
Trisha: Probably. It depends. The chances of ovarian cancer are increased, but not as alarmingly as they are with breast cancer. Especially BRCA2 versus BRCA1—it depends on which one you have. When it comes to that point, I’ll probably be married so it’ll be easier to make that decision. Just the whole going into menopause right away is a huge thing to think about.

Rachel: That’s a good point, I never even considered that.
Trisha: My aunt had her boobs done because she had breast cancer, and then when she was done she immediately had her ovaries out. And so she went through menopause, and it was hard on her to go through menopause at an early age.

Rachel: So do a lot of people—at the Playboy Mansion and your friends in general—know about the BRCA gene and your mastectomy decision? Do you talk about it with them?
Trisha: My friends in general know it, and the people that I’m close to—the core group at the Playboy Mansion—know about it. And they’re very supportive. They just say, “whatever makes you happy. Whatever you need to do in life, do it.” I don’t think that everyone outside of the BRCA community understands it completely, but they understand the generalization of what you need to do and they’re very supportive which is good. I came to the Playboy Mansion with Hef and others knowing I had this. And they still accepted me.

Enjoying Sunday Funday at the Playboy Mansion…many thanks to my gracious host, Mr. Hugh Hefner, and his lovely girlfriend (and my tour guide) Trisha Frick.

Rachel: Oh interesting! So you were open about it?
Trisha: Yes, I was open about it before I came here. I told them that at some time, I’m going to have a mastectomy done. I didn’t say when exactly, but I said that at some time in my life I’m going to have this done—and they were very accepting of it.

Rachel: That’s great. I’ve learned that most people are accepting of it. I think the oldest generations are the most freaked out by it. Sometimes they say, “why don’t you just wait to see what happens? They could come out with something!”
Trisha: I’ve heard that, even from younger people. But I don’t want a recall on a drug and still have a chance of cancer. I don’t want the side effects from a recalled drug.

Rachel: I agree. I think my peace of mind is more valuable than waiting for some sort of miracle drug to be produced.
Trisha: They’ve been trying to figure out cancer for years. I don’t see them, in the immediate future, saying, “Oh, here’s the miracle cure!”

Rachel: Nope! So, back to your surgery. Is there a time frame you’re looking at?
Trisha: It’s just really when the insurance starts moving and I know I have approval, and then, when can I fly my mom out here?

Rachel: That’s so smart. I don’t know how I would have done it without my mom.
Trisha: The insurance is the big hurdle for me. You have to deal with the after-math of the prophylactic mastectomy too, more than just the physical and mental issues; the financial issues, the billing issues.

Rachel: Okay wrapping up…do you have any words of wisdom?
Trisha: Don’t second-guess yourself and go with your gut!

…Well, you heard the girl! Go with your gut! Don’t let other people make your decisions for you. You are your own advocate!