1 year +

Hearty Pioneer · April 2013

Hi, March 7, 2012 I was diagnosed with ovarian cancer. I had the debulking surgery, followed with 18 weeks chemotherapy, both IV and IP. August 3, 2012 I was declared cancer free. Yeah!

Feburary 2001 I had two lumps removed from my right breast. No chemo required. Currently, I have an 87% chance of breast cancer. So, the end of June I am scheduled for a double mastectomy. Trying to decide if I am going to have reconstruction or not... any advice?

Alexandra · April 2013

Welcome to the board Hearty Pioneer

Congratulations of being NED for 8 months!

I am not sure why you think that you have 87% risk of breast cancer. I suppose you are having prophylactic mastectomy because you tested positive for BRCA1 or BRCA2. BRCA risk is calculated as life-time risk and is cut in half with oophorectomy. Anyway it's a personal decision. Being BRCA1+ myself and stage 3C ovarian I decided against prophylactic mastectomy and settled on just monitoring with mammo and MRI.

Reconstruction is another personal decision. It's important that you do what feels right to you, and not try to please others. If you read through Breast Cancer board, you will see that many women are happy with their reconstruction decision and many decided against it, use prosthesis or nothing at all and are just as happy. My mom (67) had unilateral mastectomy 14 years ago and does not even want to talk about reconstruction. I know a woman in her late 50's who went through expanders, infections, tram flap surgery, nipple reconstruction, areola tattooing, the whole 9 yards. Her new boobs look awesome but are they worth the pain?

Good luck to you with whatever you decide to do!

123Miley · April 2013

Like Alexandra I think it is

Like Alexandra I think it is very much a personal choice. My sister is a 10 year breast cancer survivor. Double mastectomy, chemo and radiation. She did have the reconstruction. For her it was never a question that she wouldn't. She was 43 when diagnosed, married and with two young children. It was the right decision for her. It is a long and arduous process but was worth it for her. And yes she did get a very nice upgrade! LOL!

Her biggest issue - on a bit of a personal note - was the loss of sensitivity. That of course is not because of the reconstruction but the reconstruction doesn't fix that either.

On a lighter note I had a great aunt growning up that had one breast removed. She wore an insert in her bra. I remember her being in the kitchen at family get togethers (she was a fabulous cook!) and getting hot and tired of messing with her insert She would just pull it out, toss it aside and go on mixing and stiring!

I have a friend that is opting for a double mastectomy and hysteroctomy as well due to the family history and her genetic tests. She lost her mother and aunt to breast cancer andher sister was diagnosed about a year ago. It is not an easy decison I am sure. Although I have ovarian and my sister has breast - we have both been tested and do not have the gene. So thankfully I am not faced with that.

Check in with the breast cancer board for more info and good luck to you.

Hearty Pioneer · April 2013

Alexandra said:
Welcome to the board Hearty Pioneer
Congratulations of being NED for 8 months!

I am not sure why you think that you have 87% risk of breast cancer. I suppose you are having prophylactic mastectomy because you tested positive for BRCA1 or BRCA2. BRCA risk is calculated as life-time risk and is cut in half with oophorectomy. Anyway it's a personal decision. Being BRCA1+ myself and stage 3C ovarian I decided against prophylactic mastectomy and settled on just monitoring with mammo and MRI.

Reconstruction is another personal decision. It's important that you do what feels right to you, and not try to please others. If you read through Breast Cancer board, you will see that many women are happy with their reconstruction decision and many decided against it, use prosthesis or nothing at all and are just as happy. My mom (67) had unilateral mastectomy 14 years ago and does not even want to talk about reconstruction. I know a woman in her late 50's who went through expanders, infections, tram flap surgery, nipple reconstruction, areola tattooing, the whole 9 yards. Her new boobs look awesome but are they worth the pain?

Good luck to you with whatever you decide to do!

MRI

Alexandra,

Thank you for your reply. How often do you have the MRI? Have you had other issues due to being BRCA 1?

Hearty Pioneer

Hearty Pioneer · April 2013

123Miley said:
Like Alexandra I think it is
Like Alexandra I think it is very much a personal choice. My sister is a 10 year breast cancer survivor. Double mastectomy, chemo and radiation. She did have the reconstruction. For her it was never a question that she wouldn't. She was 43 when diagnosed, married and with two young children. It was the right decision for her. It is a long and arduous process but was worth it for her. And yes she did get a very nice upgrade! LOL!

Her biggest issue - on a bit of a personal note - was the loss of sensitivity. That of course is not because of the reconstruction but the reconstruction doesn't fix that either.

On a lighter note I had a great aunt growning up that had one breast removed. She wore an insert in her bra. I remember her being in the kitchen at family get togethers (she was a fabulous cook!) and getting hot and tired of messing with her insert She would just pull it out, toss it aside and go on mixing and stiring!

I have a friend that is opting for a double mastectomy and hysteroctomy as well due to the family history and her genetic tests. She lost her mother and aunt to breast cancer andher sister was diagnosed about a year ago. It is not an easy decison I am sure. Although I have ovarian and my sister has breast - we have both been tested and do not have the gene. So thankfully I am not faced with that.

Check in with the breast cancer board for more info and good luck to you.

Funny aunt

Miley,

sounds like you have a very funny aunt-- comfortable with herself and her family!

Sorry about your sister's and your cancer journey, however, glad you don't have the genes.

Thanks for your kind words,

Hearty Pioneer

Alexandra · April 2013

Hearty Pioneer said:
MRI
Alexandra,

Thank you for your reply. How often do you have the MRI? Have you had other issues due to being BRCA 1?

Hearty Pioneer

BRCA1+

I was tested for BRCA a few weeks after I had been diagnosed with OVCA in May 2012. Honestly the only reason I got tested was for my 18-year-old daughter. In another month my test came back positive for Ashkenazi mutation 185delAG. Then I had my daughter and my mother tested, and both of their tests came back negative. I have no siblings.

I was told by the doctors not to worry about it until my hysterectomy and chemo for OVCA were over. However I wanted to be sure and got first mammo and breast MRI before hysterectomy in August 2012. There were no problems. I entered high risk screening program that involves doctor's exam and mammo every 6 month and MRI once a year. A few months later I found a lump, went to see the doctor, demanded and received un-scheduled breast ultrasound and mammo. It was determined that the "lump" was a 2cm fatty nodule. So now I'm back on schedule and my next MRI will be in August 2013.

After I was finished with chemo I decided to get a tummy tuck. One of my cost-saving ideas was to get prophylactic mastectomy with tram flap reconstruction that will kill 2 birds with 1 stone and also be covered by insurance and free of charge for me. I consulted with high risk breast cancer oncologist (Dr. A. Eisen at Odette Cancer Center in Toronto) and she advised against prophylactic mastectomy. Below is unedited transcript of our conversation.

ASSESSMENT:

We had a long discussion about her history of stage 3C ovarian cancer and underlying prognosis. She is fully aware of her prognosis from this. Alexandra asked me my opinion about bilateral mastectomy and I told her I did not think that this was the best option for her. I told her that in her situation, some women opt not to do breast screening either, but she is concerned and would like to proceed with this.

I was upset for about 5 minutes and then went ahead with my tummy tuck and paid for it myself. It looks even better than I expected.

And I don't give a flying **** what that morbid MD thinks about my prognosis and lifespan.

Being BRCA1+ does not cause me any more anxiety than knowing that my ovarian cancer would most likely come back. I will deal with it when it happens.

Hope that helps,

Hearty Pioneer · April 2013

Alexandra said:
BRCA1+
I was tested for BRCA a few weeks after I had been diagnosed with OVCA in May 2012. Honestly the only reason I got tested was for my 18-year-old daughter. In another month my test came back positive for Ashkenazi mutation 185delAG. Then I had my daughter and my mother tested, and both of their tests came back negative. I have no siblings.

I was told by the doctors not to worry about it until my hysterectomy and chemo for OVCA were over. However I wanted to be sure and got first mammo and breast MRI before hysterectomy in August 2012. There were no problems. I entered high risk screening program that involves doctor's exam and mammo every 6 month and MRI once a year. A few months later I found a lump, went to see the doctor, demanded and received un-scheduled breast ultrasound and mammo. It was determined that the "lump" was a 2cm fatty nodule. So now I'm back on schedule and my next MRI will be in August 2013.

After I was finished with chemo I decided to get a tummy tuck. One of my cost-saving ideas was to get prophylactic mastectomy with tram flap reconstruction that will kill 2 birds with 1 stone and also be covered by insurance and free of charge for me. I consulted with high risk breast cancer oncologist (Dr. A. Eisen at Odette Cancer Center in Toronto) and she advised against prophylactic mastectomy. Below is unedited transcript of our conversation.

ASSESSMENT:

We had a long discussion about her history of stage 3C ovarian cancer and underlying prognosis. She is fully aware of her prognosis from this. Alexandra asked me my opinion about bilateral mastectomy and I told her I did not think that this was the best option for her. I told her that in her situation, some women opt not to do breast screening either, but she is concerned and would like to proceed with this.

I was upset for about 5 minutes and then went ahead with my tummy tuck and paid for it myself. It looks even better than I expected.

And I don't give a flying **** what that morbid MD thinks about my prognosis and lifespan.

Being BRCA1+ does not cause me any more anxiety than knowing that my ovarian cancer would most likely come back. I will deal with it when it happens.

Hope that helps,

breast MRI

Alexandra,

Thank you for sharing your life events and decisions, yes, it helps. It is tough when doctors are not supportive.

Yesterday I had a CT scan to see if my belly fat is healthy and has enough vessels to do a DIEP procedure. If the CT scan comes back negative, I will have no choice but to go flat. Later this month I will have another breast MRI, I had my first one September 2012.

So, currently I am in the wait and see process.

1 year +

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