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nontacitare [userpic]
New member
by nontacitare (nontacitare)
at August 4th, 2010 (08:13 pm)

I am a three year breast cancer survivor who found out last year that I have the BRCA1 mutation. I'm 42, which means I'm supposed to get an oopherectomy.

This scares me. I know I'm supposed to say, "Oh, I'm high-risk? Cut everything out!" But instead, I find myself resisting. I don't have children (my husband and I tried for several years, we got divorced, and seven months later I got breast cancer), and the thought of making that final really bothers me.

Was anyone else hesitant about getting an oopherectomy?

Seeking Survivor Stories
by bjraphael (bjraphael)
at June 29th, 2008 (12:36 pm)

My name is Bette-Jane Raphael and I am a writer and editor at Red Rock Press in NewYork. Red Rock is putting together a book for cancer patients. This is a not-for-profit endeavor aimed at bringing help and hope to those currently in treatment for the disease.

I am looking to interview cancer survivors for the book, individuals who have been in remission and/or cancer free for at least 3 years and who feel their experiences can offer comfort to those in the midst of dealing with the disease.

Did you learn something new about yourself during your treatment? Did you acquire a new skill or interest, fulfill a long held ambition, form a new relationship or re-form an existing one? Did you devise strategies that helped you ease your suffering and/or take a more active role in your treatment? Did you rethink the course of your life, or encounter something unexpected that changed it? Did you experience something surprising and/or inspiring? If so, I’d love to talk to you.

The interviews should take no more than an hour to complete and can be done by phone. Stories included in the book will appear under the interviewee’s byline (unless anonymity is requested), in his or her own words. Interviewees will be able to see and approve their stories before publication. No one will be paid for his story.

If you’re interested in being interviewed, you can e-mail me at survivorbook@gmail.com. Please give your name, age, type of cancer and dates of treatment, followed by a sentence or two describing your experience. If I think your story sounds right for the book, I will contact you to set up a preliminary interview. I look forward to hearing from you.

kosherbride [userpic]
getting tested
by kosherbride (kosherbride)
at October 20th, 2007 (10:46 pm)

In the last 4 months my mother and maternal grandmother have been diagnosed with breast cancer, the past 2 years both my mother and her sister have had major hysterectomies because of tumors found.

Should I get gene tested? I am recently married, 23 years old and want to begin having children in the next few years.

Aside from dealing with these family health issues, I'm grappling with the decision to get tested at all. It's clear I have a family history and I will be vigilant for the rest of my life. I keep weighing the pros and cons and just can't come to a decision.

My Questions:

How much does the test cost? Does insurance pay for it? If I do in fact have the gene, does this help me deal with insurance issues? (advanced screening, etc) Also- I have been on Ortho-tricyclen and Ortho-lo for nearly 5 years. I was planning to get off of it in the next year or so, but should I get off the pill sooner?

I'm planning to make an appointment with an OBGYN, I'd just like to hear what actual people have to say. Thanks so much

boring [userpic]
great article in the New York Times
by boring (karinny)
at September 24th, 2007 (06:55 pm)

I thought this was a great article, touches on many thoughts I have.  I'm sure you've had them, too.


roadrunnerdm [userpic]
Met with the surgeon today...
by roadrunnerdm (roadrunnerdm)
at January 17th, 2007 (02:23 pm)

Well, it's been a long road, but after a year and a half I received my final (hopefully!!) dose of chemotherapy for Ovarian cancer last week, I'm still in complete remission, and the side effects are now behind me...except the hair loss of course, which will take a bit longer to resolve itself. I'm now moving forward with a prophylactic mastectomy to reduce my continuing risk of breast cancer, and had a consultation with the surgeon today. He comes very highly recommended from former patients and fellow physcians alike, and he's a real sweetie so I feel like I'm in good hands.

My oncologist recommended waiting at least 6 weeks after my final dose of chemo before proceding with surgery, and the surgeon wants to push that back an additional few weeks more, so I'm probably looking at the second or third week of March for the operation. He performed a breast exam and studied the films from my recent mamogram, concluding that everything still looks normal and there isn't any medical reason to rush right into surgery, so it's up to me, but I'm mentally prepared for it now and ready to move forward. He plans to use a skin-preserving procedure to reduce scarring and anticipates that the operation will take roughly 3 hours, with a one night hospital stay. Reconstruction will be performed at the same time, but I haven't yet had a meeting with the plastic surgeon to discuss those details.

I'm in a holding pattern for about the next 6 weeks as I finish recuperating from chemo, but at least the wheels are in motion for the next step as well.

Take care everybody.

trshtwns01 [userpic]
BRCA2+ Update
by trshtwns01 (trshtwns01)
at January 2nd, 2007 (12:32 am)

Back in the summer, Iwrote to introduce myself and get some advice on the suggestions I was getting from my doctors. To recap, I have a VERY strong family history of breast and ovarian cancers, some pre-menopause. I did genetic testing and was found to have a BRCA2 mutation. My mother tested and she had the same mutation. My gyn had done some testing and found that I was already in perimenopause.

Update on the surgeries and my current statusCollapse )

The Artist Formerly Known as Irish_Lily [userpic]
One Year
by The Artist Formerly Known as Irish_Lily (kellygreen)
at November 15th, 2006 (03:58 am)

Hi Ladies,

It's been one whole year since I got my positive test results back. One whole year of bloodwork and MRIs, ultrasounds and breast exams, mammograms and genetic councellors. I met with my oncologist today and everything seems fine so far. We're going to be sticking with the same program: no birth control, try to eat healthy, alternate MRIs and mammograms/ultrasounds every six months, and manual breast exams from her or my family doctor every six months. I can live with that. :)

She also suggested that I start taking a selenium tablet every day, as selenium apparently helps to reduce the risk of ovarian cancer in young women. Has anyone else heard about this? She was apparently in touch with the oncologist who is heading up the BRCA-1 research team in Toronto (who my dad and his sisters were originally tested by), and he suggested that she suggest I start taking it.

I hope you're all doing well, and that the first year of this community has been beneficial to you all.

Yours in hope,
Erin :)

trshtwns01 [userpic]
Prophylactic measures
by trshtwns01 (trshtwns01)
at October 26th, 2006 (03:33 pm)

I posted back in June, after I had been diagnosed as BRCA2+ and we had verified my mother had the same mutation. Because of the strong family history, some of which was before age 50, and the confirmed mutation, the oncologist I was seeing recommended I have a prophylactic mastectomy and immediate reconstruction. He said we could monitor every 6 months, but that it wouldn't change my risk for getting breast cancer. He also wanted me to see my gyn to check on ovarian cancer. Since we are done with children, I'm 36 and have already lost one ovary to cysts and had pre-cancer in my cervix, he recommended a full hysterectomy.

These recommendations seemed so drastic! I went to a second oncologist to get another opinion. He agreed with both doctors.

Third time is the charm (and denial is a strong driver) so I hooked up with a breast cancer oncologist at UT Southwestern who specializes in high risk cases. He agreed with the assessments and put together a comprehensive team. Trusting UT Southwestern's reputation as I do, and the quality of these doctors, I decided to go with them on my care. The plastic surgeon believes I am a candidate for DIEP reconstruction, so that is where we are headed, but because of the length of that surgery (10-15 hours), he wanted the hysterectomy to happen seperately and for me to be healed ahead of time.

So, on October 12, I had a full hysterectomy here in Dallas. 5 days in the hospital, and things went well. I'm at home resting now, and seem to get better every day. I can tell when I have overdone it and need to slow down, but I can do small trips like taking the kids to school, picking them up, and quick runs to the drug store for small items. I stopped with pain killers last week. The doctor releases me to go back to work November 27th.

On December 13, I go back on medical leave as that is the date for my mastectomy and reconstruction. For some reason, that surgery scares me more than the hysterectomy (which I probably would have had to have done one day anyway). It's such a long surgery, longer hospital stay, and more difficult recovery (with surgery on both chest and abdomen).

I know in my heart that this is the right thing. It significantly reduces my chances for breast cancer and completely removes my risk for ovarian and other reproductive cancers. It doesn't make it any less scary. Thankfully, I have a great support network around here that have been helping out and keeping me fed *laugh*

Has anyone else taken measures like this to mitigate their cancer risks? So many people seem surprised when I tell them this is our treatment plan, but our insurance company pays for it fully and the doctors say it isn't that uncommon. I've just never talked to someone who has been there.

Hope everyone is well, and remaining strong.

roadrunnerdm [userpic]
When a man is diagnosed...
by roadrunnerdm (roadrunnerdm)
at October 20th, 2006 (03:06 pm)

Breast cancer is so often thought of as a "woman's cancer"...and yet I think we all know that it is possible for men to get it too. Well, I just found out that a male friend of mine has been diagnosed with breast cancer. My sister and I are both BRCA1 positive, and we've both had our turn with cancer...and because of how very rare it is for men to get this form of cancer we of course both began to wonder if perhaps our friends is also a carrier of the gene. I'd like to encourage him to undergo the genetic test (he does have 2 daughters), and I'd also like to know if anyone else has ever had a male friend or family member experienced breast cancer. This may sound stupid, but are the treatments different for men and women? Would a man who experiences this disease have a different set of perspectives or concerns than women commonly have?

trshtwns01 [userpic]
by trshtwns01 (trshtwns01)
at June 28th, 2006 (06:43 pm)

I have known for a long time that I have a strong family history for breast and ovarian cancer, and my mom has battled it twice. I had even had pre-cancer in my cervix and colon, and I'm only 36. When I took my mom to her new oncologist, he suggested I get genetic testing.

Yesterday, he called to say the results were back on BRCA1 and BRCA2 and he wanted me to come in to talk to him today. They found a mutation in BRCA2, but it is a rare mutation. The testing lab has only found 13 people with this particular mutation, so they aren't sure of how much of a relationship it has with breast cancer. The mutation is V1610M. It really doesn't mean much to me now.

It has scared me though. With my family history, my history, and this mutation, the oncologist wants me to immediately get a diagnostic mammogram and ultrasound of both breasts. Then I have to get mammograms every 6 months. He also mentioned prophylactic mastectomy and immediate reconstruction. My children will also have to get tested in the future.

As it is a rare mutation they don't know much about, the testing lab is testing my family for free.

If it turns out my mother has the same mutation, then my chances skyrocket and I need to look at being more aggressive with this.

Has anyone in the group taken preventative measures against breast cancer upon finding out about a BRCA mutation?

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