Got my test results today. Even though I had sort of expected them to be positive, was a little stunned by the reading the test.
Have been busy telling people. Partly to get enough people told before the shock of it wore off. So... on to the next steps.
And all of the questions that I have been refraining from entertaining until I knew one way or the other.
Had my mamm and TVU (transvaginal ultrasound )today. No call backs, so that is a good sign. Will get CA-125 (blood test which gets elevated in ovarian cancer) tomorrow. Feeling ok about being cancer free and not too late to be in the risk reduction category. DSO was supportive, despite me telling her by phone. I knew I could not make it all day without telling anyone and did not want her to find out from anyone else. Mom and Dad were also supportive, despite being distant on the subject before. Bosses and co-workers are great so far. I anticipate more shock and disbelief at my risk reduction strategies as I go on. Stumbled on to a very nice GC (genetic counselor) at a hospital about 2 hours away, but near DSO's family. And at the center where our friend is having her surgery in a few weeks. They have a BRCA clinic at Beaumont , and GYN/Onc, and a dedicated breast surgeon. Should pass muster as far as seeking experts. Appointment with Whitney Ducaine, CGC on 3/15 and encouraged to set up appointments with the surgeons before then. Anxious to move on to action.
So, for the questions? To hyst or not to hyst? I have no known uterine problems, no cancer anywhere, I hope? Doubt that I will want to take steroids, or that my FP would give them to me. BPM (Bilateral prophylactic mastectomies )and oophorectomies together or separately? I have never been off work for even 2 weeks the past 11 years. Practice pretty much shuts down when I am not working. Relatively healthy, I think I have a high pain tolerance. (niece has congenital indifference to pain and feels none. )
How long after BPM can I push hard on my golf cleat tool to change DSO golf spikes? How long to golf? How soon to come back to work? Not planning recon. Will I be able to wear those golf shirts that are too small for my 42Ds now. if I go without prostheses? (Mom warns that I will be pear shaped. Also says that people are either too kind to say anything or don't notice. She had BPM 20 years ago for LCIS and estimates that she wears a bra with prosthesis or socks a couple times per year. I generally care less about what people think about how I dress than she does. ) Who to tell and how? I am considering sending out a mass email at work. There are 10 or so nurses, several administrators, and 10 or so docs that I am close enough with to definitely tell, and will be talking about it( maybe once or twice?:J) in front of many others, as my main social interactions with these folks are on the wards during rounds. Knowing that some will consider a mass email weird. Knowing that my absence for 3 weeks will definitely be missed, and after, the absence of my breasts will definitely be noticed.
Also considering letting myself be a news story in the local paper. Has anyone done that? It just seems so random and senseless, that the teacher in me wants to find some meaning. This all makes DSO very nervous.
Good things about the challenge of being BRCA1 positive
1. Way better than having cancer.
2. Life lessons
3. No way for my uncles and cousins to ignore the potential impact of our family genetic issue.
4. Get to be a real live amazon.
5. Don't have to worry of mom's LCIS makes me at higher risk.
6. Good reason to reach out to old friends and make new friends.
7. Excellent reason to re-prioritize my life.
8. Head start on the new weight loss program.
9. Learning what it is like to be a patient.
Bad things about having ghe challenge of being BRCA1 positive
1. Surgeries
2. Funny looks from people who think I am being radical
3. Worry about getting cancer before I am done reducing my risk. (and after, I guess)
4. Stress for me, co-workers, family, DSO etc.
5. Time off work, away from golf, etc.
6. Having to be a patient.
That is enough for now.
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