Okay, you're BRCA positive, now what? 7 things to do

justsayom

Okay, you're BRCA positive, now what? 7 things to do

1. Talk to a genetic counselor:
This is an important first step. A genetic counselor will discuss the ins and outs of the BRCA(Breast Cancer) mutation, from statistics to family history to screening. Talk to your gynecologist about finding one in your area. Check a local cancer hospital. I was lucky enough to be living in NY at the time, so I visited a counselor at Memorial Sloan-Kettering Cancer Center. Talking to a counselor will help guide you on what your next steps should be. Also, check the FORCE (Facing our Risk Cancer Empowered) message boards for counselors in your area.

2. See doctors:
Seeing specialists that specifically see patients with the BRCA mutation can help you feel more at ease. They know all about the mutation and see BRCA patients daily. Again, check local cancer hospitals, ask your gynecologist or if you can't find BRCA specialists in your area and can't travel to see them, try to find good, qualified doctors in your area. What type of doctors? For your breasts, a gynecologist is recommended, but there are breast specialists in some areas. The doctor will advise you to have both a MRI and mammogram of your breasts every year. I chose to alternate between a mammogram and a MRI every 6 months. You will also have 6 month checkups with this doctor. As for your ovaries, a gynecologist is recommended. A check up every 6 months with an ovarian ultrasound is what is recommended. You can also check the FORCE message boards for doctors in your area.

3. Surveillance:
I can't recommend enough to get your 6 month checkups and your 6 month surveillance testing. Get your MRIs, mammograms and ovarian ultrasounds and see your doctors. Detecting a tumor in its early stages can save your life.

4. Research:
You can learn a lot on your own. Google BRCA and you will find many journal articles. Read books, see films about BRCA. I will recommend some in my next blog, BRCA: A previvor's story, from discovery to empowerment. Remember knowledge is power.

5. Talk to others and get support:
A great way to learn about the mutation and find others who understand what you are going through is on the FORCE website. The message boards cover just about every topic you can think of. If you can't find what you are looking for, post a question and I guarantee you will get many helpful responses. If you have a local FORCE chapter, they typically have regular meetings, every month or every few months. There you will meet other women just like yourself. FORCE has a great program called SOS, which stands for Support our Sisters. They will match you up with someone in your area to talk to. I just had lunch with a woman who used the same doctors as I will for my upcoming procedure. It was great to talk to someone who understood my concerns and fears and who could answer all my questions. Plus, I made a new friend and really felt empowered after talking to her.

6. Attend a FORCE conference or local chapter meetings:
You can get so much out of the national FORCE conference. This normally takes place in Orlando, Florida every summer. I will discuss all about what to expect at a FORCE conference in my blogs titled, Let the FORCE be with you Parts I and II. Local chapter meetings are great for one on one time with other women. Both the conference and the meetings can be invaluable tools in your journey.

7. Talk to a therapist:
Talking to a psychologist or social worker can help you sort through your feelings, worries, fears and concerns. I was lucky enough to be living in NY and saw a psychologist who specializes in seeing patients who are BRCA positive. I saw her soon after I got my results. This really helped in addressing all of the feelings that I was having.

justsayom

Thanks for posting. This is very helpful information.

Bklyn27

Very informative. I appreciate you sharing your knowledge.

justsayom

Thank you. I hope it helps others.

BMac

Unfortunately 6 month surveillance DIDN'T help me.  I got Stage III ovarian cancer in 2002 and Stage III BC in 2007.  With the ovarian, a cyst was found on one ovary.  I was followed up 3 months later only to be diagnosed with tumours on both ovaries.  My advice to anyone would be to insist on a more timely follow up in a case like this.

justsayom

Thank you for your post. I am so sorry for all you have gone through. And in your case, I definitely agree, timely followup is most important. Sharing your experience will only help others.