@jodymattinen I was disappointed in 2016 with stage 4 breast cancer, 41 years old tested positive for the gene and decided to have a doubt masectomy with no reconstruction. I am now metastatic in lungs, bones and brain.
My sister then was tested for the gene and was positive. She does not have cancer, but she elected to do a preventive double masectomy with reconstruction. She is Very happy. Knowing that she is able to reduce risk is a mental life saver for her. Sometimes she wishes she didnt have reconstruction. The reconstruction is multiple surgeries. But they look good now and she is happy.
Hi @lynniesf, welcome to Mayo Clinic Connect. Wow, you and your sister really have quite the story. Am I understanding correctly that you both tested positive for having genetic risk and you both elected to have preventative mastectomies? She remains cancer-free, but you were diagnosed with stage 4 breast cancer in 2016. Is that correct?
Hi @lynniesf, welcome to Mayo Clinic Connect. Wow, you and your sister really have quite the story. Am I understanding correctly that you both tested positive for having genetic risk and you both elected to have preventative mastectomies? She remains cancer-free, but you were diagnosed with stage 4 breast cancer in 2016. Is that correct?
Jody
I'm not in that category but in a 'similar' category. When I was first diagnosed I was a Stage 0 cancer (maybe I'd get invasive cancer, maybe not). Two years later I had invasive cancer, but with lots of careful follow up on my part I caught my cancer at Stage 1. If I could go back in time I would have removed my breasts at the Stage 0 pre cancer stage and saved myself the worry and extra concern about recurrence. But, I didn't know what would happen and neither did my doctors. It could have been a one time thing and resolved. If you decide to wait I think the most important thing is to be really, really, really diligent about follow ups and make sure you trust your doctors, understand your tests and do lots of research and outreach. I am glad for all the time I spent monitoring my situation because I was able to catch the cancer early. Hugs and hopes you're one of the lucky ones who won't even get invasive cancer!
I also had stage 0 DCIS and opted for bilateral mastectomies. Pathology found very early cancer on the opposite that had not yet shown up on mammograms.
I was just diagnosed with ductal hyperplasia without atypia and PASH after a biopsy last week....am I crazy to be thinking about a double mastectomy.....I have had a "dense mass" in my right breast that that I have been monitoring for 10 years and a second large mass in the same breast that is only a few months old I have also had my left breast ultrasound after my mammogram because of suspicious findings so I feel like both of my breasts are ticking time bombs ... I feel like it's alot to go straight to a mastectomy..
BUT I am terrified of cancer....my mom is fighting lymphoma ( for the 2nd time in six months) and watching makes me so scared of chemo! Have others made this decision to go straight to a mastectomy without the lumpectomy...and more preventative measures?
I was just diagnosed with ductal hyperplasia without atypia and PASH after a biopsy last week....am I crazy to be thinking about a double mastectomy.....I have had a "dense mass" in my right breast that that I have been monitoring for 10 years and a second large mass in the same breast that is only a few months old I have also had my left breast ultrasound after my mammogram because of suspicious findings so I feel like both of my breasts are ticking time bombs ... I feel like it's alot to go straight to a mastectomy..
BUT I am terrified of cancer....my mom is fighting lymphoma ( for the 2nd time in six months) and watching makes me so scared of chemo! Have others made this decision to go straight to a mastectomy without the lumpectomy...and more preventative measures?
@lorie3773, I can imagine you're terrified of cancer. You're not crazy to be considering a double mastectomy. It's wise to consider all your options and to know what decision will give you peace of mind to LIVE your life.
@auntieoakley@lynniesf@jodymattinen@trixie1313 can give you more thoughts about their choices and experiences. Lorie, while this may feel like a ticking time bomb, you have time to consider your options carefully. Ask questions and keep asking them - here and of your cancer team - until you feel comfortable.
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Hi @lynniesf, welcome to Mayo Clinic Connect. Wow, you and your sister really have quite the story. Am I understanding correctly that you both tested positive for having genetic risk and you both elected to have preventative mastectomies? She remains cancer-free, but you were diagnosed with stage 4 breast cancer in 2016. Is that correct?
Yes you got that correct. I have metastatic disease now in bones, lung and brain. I am on active IV chemo. She is my biggest support.
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1 ReactionWas your Stage 0 diagnosis DCIS, LCIS or something else? Thanks
I also had stage 0 DCIS and opted for bilateral mastectomies. Pathology found very early cancer on the opposite that had not yet shown up on mammograms.
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1 ReactionI was just diagnosed with ductal hyperplasia without atypia and PASH after a biopsy last week....am I crazy to be thinking about a double mastectomy.....I have had a "dense mass" in my right breast that that I have been monitoring for 10 years and a second large mass in the same breast that is only a few months old I have also had my left breast ultrasound after my mammogram because of suspicious findings so I feel like both of my breasts are ticking time bombs ... I feel like it's alot to go straight to a mastectomy..
BUT I am terrified of cancer....my mom is fighting lymphoma ( for the 2nd time in six months) and watching makes me so scared of chemo! Have others made this decision to go straight to a mastectomy without the lumpectomy...and more preventative measures?
@lorie3773, I can imagine you're terrified of cancer. You're not crazy to be considering a double mastectomy. It's wise to consider all your options and to know what decision will give you peace of mind to LIVE your life.
@auntieoakley @lynniesf @jodymattinen @trixie1313 can give you more thoughts about their choices and experiences. Lorie, while this may feel like a ticking time bomb, you have time to consider your options carefully. Ask questions and keep asking them - here and of your cancer team - until you feel comfortable.