new and in need of advice...please x

[heidi]

HI all...I am new to this site. i am 24 and have multiple her2+ breast cancer, in left breast. Im due my 3rd fec on 6th april and then due heceptin then mastectomy, more herceptin and radiotherapy.. I am considering a double mastectomy, as a preventative?? is this a good idea? does anyone have experience of this? I havnt talked to anyone about any of this really and could do with some advice please....xx

[Lori R]

Heidi,
I am glad you found us as this site is a great sounding board to kick around ideas.

I can't speak to the scientific pros/cons of having a preventative mastectomy but can share my personal experience.

I decided to have the preventative mastectomy. It was based on a couple of thoughts. #1. I knew that I didn't EVER want to repeat the process of being informed I had breast cancer and possibly going through years of follow up appointments. I am pleased with my decision knowing that I've done everything possible to battle this disease.

#2. Appearance - for some reason it was easier for me to handle emotionally. I was symetrical and didn't have to worry about matching a natural breast with the possibility of an implant. I ultimately decided against reconstruction...which again is a very personal choice. Mine had to do with not wanting more surgery and recovery. But...maybe I'll change my mind in a couple of years.

I hope you are able to make a decision that you feel comfortable with.....Lori

[BonnieR]

Heidi, this is a very big question you ask. And a big decision for you to make. Have you discussed any of this with your oncologist and treatment team? I think most everyone would agree that you should seek out a second and even third opinion about all your treatment options. If you are in the care of a cancer center they often have patient advocates, group meetings and counselors. Most have "tumor boards" where your case is presented to a variety of disiplines all at once and they discuss options among themselves to share with you.
Contact the Cancer Society. Make a list of all your questions and concerns to ask your oncologist. Put it in writing and have someone with you to hear the replies.
I had a bilateral mastectomy but am WAY older than you.

It would be helpful if you put your specifics here in your signature so we would know more details.
Keep the faith. We will support you.

[Rich66]

It's a timely question:
http://well.blogs.nytimes.com/2010/0...ealthy-breast/

[Jackie07]

Heidi,

I wanted a double mastectomy in 2003 when the 1.2 cm tumor was found on the edge of my right breast near the center of my chest. I was talked out of it by my surgeon. However, she missed a small chunk of the cancerous tissue and then everyone missed it for 4 years. So I ended up with a recurrence and that's when I insisted on a double mastectomy.

Statistically, the doctors will tell you, it does not make much difference. But we are not part of the normal statistics. We have a very aggressive type of breast cancer that is called 'Her2'. (Mine was Her2+++)

Your situation is a bit different. You are very young being just 24. Have you checked out the Young Survivors website? I think you can find it by using the keywords 'young breast cancer survivors'.

Have you done a genetic counseling? I requested for the BRCA tests even though (according to my oncologist) the chance for me to have the BRCA1 or BRCA2 genes is minute. However, they did find a 'Variant of unknown significance'. At the time, only my Mother's Non-Hodgkins Lymphoma was known to us. But last fall, we learned that my 2nd Brother (10 years my senior) had to have a colon cancer surgery. That information did it! I had had a hysterectomy/oophorectomy done this January (and my insurance company approved the procedure.)

Doctors tend to think that we are 'panicking' at the cancer news and that's why we wanted to get rid of everything. I really hope physicians will have better training in counseling their patients on this area. My family doctor did not like the idea that I had decided on the prophylactic hysterectomy/oophorectomy procedure all by myself. He told me to seek a second opinion. So I called my oncologist and he agreed with me and gave me the 'go ahead'.

Another consideration I had was that my MUGA score had been lowered significantly during my chemotherapy and I had to stop the Herceptin infusion at 22 weeks. That fact meant I would have fewer options if I'd have another recurrence.

Remember to keep your heart strong by doing regular exercises and eat well. I was 47 when I had the recurrence and double mastectomy. I probably would have kept the disease-free breast if I were your age when my recurrence happened.