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Breast Cancer Awareness Group Breast Cancer Awareness Group

BRCA1 positive

Posted by on Sep. 17, 2013 at 1:03 AM
  • 8 Replies

Hello everyone! I'm Colleen and I'm new to the group. Last summer I tested positive for the BRCA1 gene. I tallied in as the 7th out of 9 women in my family that tested positive. As of right now I'm the only one who has not had a double mastectomy yet. I am only 25 so they want to wait a few more years before they do it. I have been battling with the fact that I may lose my nipples, that I will have franken-boobs (my cousin's term) and most of all which surgery to try for; implants or the DIEP flap. My cousin got the DIEP flap and let me tell you, the picture of her breasts post surgery truely terrify me. I know I sound vain but my breasts have always been a point of pride for me. I'm already bitter that I'm going to lose sensation in my breasts, but to have them covered in scars as well is almost too much for me to handle. My sister had implants as well as the rest of my cousins who had double mastectomies, but my sister is not doing well. She has had (to date) 6 surgeries as her body kept rejecting the implants or wouldn't heal correctly. She currently doesn't have any implants at all so her body can heal but she is looking at roughly 2 more surgeries at least. I'm nervous because I have most of the same issues as she does medically (we both have POTS postural orthostatic tachycardia syndrome) and I'm afraid I'm going to have the same problems with my body rejecting implants. So I guess I'm just asking for stories...what surgery did you have, what were your results, what do your breasts look like (in any other group I know that this would sound like a super creepy question, and I promise I'm not a creeper!).
On a cheerier note, I'd also like to share my cousin's miracle story. She was diagnosed and treated for stage 3 breast cancer and as it was so aggresive, she did not have time to harvest her eggs. She was told that she would most likely be infertile after the chemo and to prepare herself to not have any more children (they had one girl and wanted more). She had just kicked cancer's ass, had the DIEP flap and amazingly got pregnant without even trying! She just had her son on the 9th! Dean weighed in at a whopping 9 lbs 1.5 ounce beating my own son (who held the record for heaviest baby in my family) by a half an ounce. She even did an article for babycenter about it.
www.andron.com/tricia/2013/08/19/what-a-difference-a-year-makes/#more-202

blogs.babycenter.com/mom_stories/08192013pregnant-and-still-recovering-from-stage-3-breast-cancer/

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by on Sep. 17, 2013 at 1:03 AM
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Replies (1-8):
MamaLioness2012
by New Member on Sep. 17, 2013 at 11:32 PM

bump? anyone at all?

Nora_A
by Member on Sep. 18, 2013 at 2:17 PM

I'm sorry I'm no help to you at all. although I did have breast cancer, I opted for a lumpectomy, because I kind of like my breasts too. With all of the cancer in my family, breast cancer was still the one that I feared the most. 

I have a 17year old daughter, and I am contemplating genetic testing for her sake. My mom died of uterine and metastatic lung cancer. One of her sisters died of ovarian cancer. Another had breast cancer. Another sister died of melanoma, and the only boy in my mom's family had prostate cancer, but eventually lost his battle to esophageal cancer. 

Why I worry for my daughter is that she is getting whammied from both sides of the family. My husband's youngest sister had breast cancer eight years ago. She is currently dealing with stage 4 cancer with unknown primary. No, it is not a reoccurance of the breast cancer, but despite having done every test known to man, they cannot determine the site of the primary cancer. Apparently CUP (Cancer unknown primary) makes up less than 2% of all cancer cases, has a very poor prognosis, and is very difficult to treat. To top that off, their dad had prostate cancer, and one of his sisters had ovarian cancer. 

Honestly though, looking back on what I've been through personally with chemo, and radiation etc, and watching so many loved ones lose their fight, I would say put vanity aside and have the surgery. Then as soon as you're sure you're done having kids, have a hysterectomy with bilateral oophorectomy. If you can save yourself from having to deal with cancer treatment, believe me, it's well worth it. 

MamaLioness2012
by New Member on Sep. 18, 2013 at 8:43 PM

Thank you for sharing. I am still going to go through with the surgeries, I just don't know which surgery to go for. They are already talking about taking my ovaries in about 10 years. They want me to be done having kids before my mastectomy though so I only have about 3 or 4 more years left. I want to start trying for another soon but DH isn't sure if he wants another. He's 10 years older than me and our son is quite the handful. DH also tested positive for Lupus but our insurance ran out right after the diagnosis so he is currently untreated (another giant ball of stress) and feels like he can't handle another baby. I told him we need to decide soon since my biological clock is going to stop ticking a whole lot sooner than normal women and once they take my ovaries, there will not be another chance for a baby of our own. I wanted to be done by the time I was 30 anyway.
As for your daughter getting hit on both sides, I know the feeling. My maternal grandmother had, and beat breast cancer twice, my maternal grandfather has issues with melanoma and I also inherited a genetic disorder called POTS from that side of the family and it's a daily struggle (the condition is a problem with the autonomic nervous system, so everything you don't think about like blood pressure, circulation, heart rate, breathing, mnuscles...the things that should be on auto pilot). Then on my dad's side I've got the BRCA1. Again, like I said we are currently uninsured but I'm supossed to have a mammogram and an MRI every 6 months (an MRI, then 6 months later a mammogram, repeat) until my surgery. I haven't even been in for my annual gyno appointment this year because we can't afford it. I don't know how we're ever going to afford all the surgeries I'll need. My sister is at LEAST $90,000 in debt and between school loans and credit cards that I used to get me through college (art school is expensive) I'm at least $40,000 in the hole already. It's just all so stressful. My sister found out she was positive for the gene when she was 31 so they immedietly started the surgeries, but I've got all this time to think about it and fret over it and I kinda wish I would never have found out until it was time to start the process. Plus...I'm really going to miss MY boobs...They've always been perfect (well, as prefect as natural boobs can be) but what's more, I nursed my son with these breasts...they are a bit sentimental to me. DH is being a trooper through all this though, he doesn't like seeing me upset because there is nothing he can do about it, but he keeps reassuring me "but...you'll still be hott...and I'll still like your boobs. I mean, they'll still be boobs and I love boobs." He's so eloquent.

Quoting Nora_A:

I'm sorry I'm no help to you at all. although I did have breast cancer, I opted for a lumpectomy, because I kind of like my breasts too. With all of the cancer in my family, breast cancer was still the one that I feared the most. 

I have a 17year old daughter, and I am contemplating genetic testing for her sake. My mom died of uterine and metastatic lung cancer. One of her sisters died of ovarian cancer. Another had breast cancer. Another sister died of melanoma, and the only boy in my mom's family had prostate cancer, but eventually lost his battle to esophageal cancer. 

Why I worry for my daughter is that she is getting whammied from both sides of the family. My husband's youngest sister had breast cancer eight years ago. She is currently dealing with stage 4 cancer with unknown primary. No, it is not a reoccurance of the breast cancer, but despite having done every test known to man, they cannot determine the site of the primary cancer. Apparently CUP (Cancer unknown primary) makes up less than 2% of all cancer cases, has a very poor prognosis, and is very difficult to treat. To top that off, their dad had prostate cancer, and one of his sisters had ovarian cancer. 

Honestly though, looking back on what I've been through personally with chemo, and radiation etc, and watching so many loved ones lose their fight, I would say put vanity aside and have the surgery. Then as soon as you're sure you're done having kids, have a hysterectomy with bilateral oophorectomy. If you can save yourself from having to deal with cancer treatment, believe me, it's well worth it. 


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2curly
by Member on Sep. 18, 2013 at 10:35 PM

I was diagnosed with DCIS in late April.  Because it had spread to the surrounding tissue in my right breast, the surgeon had recommended a mastectomy.  I chose to have the bilateral mastectomy because I didn't want to be constantly worrying about the left side.  Although there is always a chance that it can come back, I wanted to lower that chance.  

Anyway I had my bilateral mastectomy the end of May.  My plastic surgeon and I had agreed that the impants would be the best option for me.  So my reconstruction started the same day as the mastectomy when he put in the tissue expanders.  

I really did not know what to expect after surgery.  I think I expected the worse.  I was not that big to begin with, so it may have been different for me than other people.  I thought after surgery that I would look really flat, but since my regular surgeon was able to save a lot of my skin the plastic surgeon filled up the expanders a little bit to keep the skin stretched.  After I healed a little bit from surgery, I started the weekly, then every other week fill of the expanders to stretch out my skiin till it couldn't be stretched much more.  Now I am due to my expanders removed and implants put in the end of this month.  

I can't tell you how the implants look because I don't have them yet, but I hear they are much more comfortable than these expanders.  I had read some horror stories on line about the pain of the expanders.  There was some soreness after each fill, but I never had excruciating pain.  The expanders are uncomfortable and don't really move with you, but they will be out soon.

I do still have pretty prominent scars, I think they take time to fade.  I still need to get my nipples done, but that will have to wait a little till the skin heals up more.

Maybe I was not overly attached to my breasts, but I feel and look fine.  I have no regrets. I want to be there for my children and I think that is all that matters.  

Good luck to you and whatever you choose.  

MamaLioness2012
by New Member on Sep. 19, 2013 at 12:35 AM

See, I'm worried mostly because my sister is having such a difficult time with time with it. Her incisions refused to heal around the expanders and it was excruciating pain, and when she had the implants they were doing the same thing. She currently has her implants completely out so she can heal and then they will start all over again and she'll probably have to have a skin graft on top of it after all these issues. We have similar health conditions and I'm so nervous that I'm going to have the same hard time healing like she did. She couldn't even lift her arm to grab the TV remote without being in immense pain. It's nice to hear a good story :-)

Quoting 2curly:

I was diagnosed with DCIS in late April.  Because it had spread to the surrounding tissue in my right breast, the surgeon had recommended a mastectomy.  I chose to have the bilateral mastectomy because I didn't want to be constantly worrying about the left side.  Although there is always a chance that it can come back, I wanted to lower that chance.  

Anyway I had my bilateral mastectomy the end of May.  My plastic surgeon and I had agreed that the impants would be the best option for me.  So my reconstruction started the same day as the mastectomy when he put in the tissue expanders.  

I really did not know what to expect after surgery.  I think I expected the worse.  I was not that big to begin with, so it may have been different for me than other people.  I thought after surgery that I would look really flat, but since my regular surgeon was able to save a lot of my skin the plastic surgeon filled up the expanders a little bit to keep the skin stretched.  After I healed a little bit from surgery, I started the weekly, then every other week fill of the expanders to stretch out my skiin till it couldn't be stretched much more.  Now I am due to my expanders removed and implants put in the end of this month.  

I can't tell you how the implants look because I don't have them yet, but I hear they are much more comfortable than these expanders.  I had read some horror stories on line about the pain of the expanders.  There was some soreness after each fill, but I never had excruciating pain.  The expanders are uncomfortable and don't really move with you, but they will be out soon.

I do still have pretty prominent scars, I think they take time to fade.  I still need to get my nipples done, but that will have to wait a little till the skin heals up more.

Maybe I was not overly attached to my breasts, but I feel and look fine.  I have no regrets. I want to be there for my children and I think that is all that matters.  

Good luck to you and whatever you choose.  


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2curly
by Member on Sep. 19, 2013 at 1:37 PM

 

That is definitely something to consider especially if you and your sister are similar.  The best advice is to talk with the plastic surgeon and discuss all your options and make sure they know what happened to your sister.  I am sorry that your sister had such a bad time with it.  I guess everyone is different.

Quoting MamaLioness2012:

See, I'm worried mostly because my sister is having such a difficult time with time with it. Her incisions refused to heal around the expanders and it was excruciating pain, and when she had the implants they were doing the same thing. She currently has her implants completely out so she can heal and then they will start all over again and she'll probably have to have a skin graft on top of it after all these issues. We have similar health conditions and I'm so nervous that I'm going to have the same hard time healing like she did. She couldn't even lift her arm to grab the TV remote without being in immense pain. It's nice to hear a good story :-)

Quoting 2curly:

I was diagnosed with DCIS in late April.  Because it had spread to the surrounding tissue in my right breast, the surgeon had recommended a mastectomy.  I chose to have the bilateral mastectomy because I didn't want to be constantly worrying about the left side.  Although there is always a chance that it can come back, I wanted to lower that chance.  

Anyway I had my bilateral mastectomy the end of May.  My plastic surgeon and I had agreed that the impants would be the best option for me.  So my reconstruction started the same day as the mastectomy when he put in the tissue expanders.  

I really did not know what to expect after surgery.  I think I expected the worse.  I was not that big to begin with, so it may have been different for me than other people.  I thought after surgery that I would look really flat, but since my regular surgeon was able to save a lot of my skin the plastic surgeon filled up the expanders a little bit to keep the skin stretched.  After I healed a little bit from surgery, I started the weekly, then every other week fill of the expanders to stretch out my skiin till it couldn't be stretched much more.  Now I am due to my expanders removed and implants put in the end of this month.  

I can't tell you how the implants look because I don't have them yet, but I hear they are much more comfortable than these expanders.  I had read some horror stories on line about the pain of the expanders.  There was some soreness after each fill, but I never had excruciating pain.  The expanders are uncomfortable and don't really move with you, but they will be out soon.

I do still have pretty prominent scars, I think they take time to fade.  I still need to get my nipples done, but that will have to wait a little till the skin heals up more.

Maybe I was not overly attached to my breasts, but I feel and look fine.  I have no regrets. I want to be there for my children and I think that is all that matters.  

Good luck to you and whatever you choose.  



 

BeaderReader
by New Member on May. 12, 2014 at 8:21 PM
1 mom liked this

Hello! I am not a mother but have made an account to connect with you because of our similar situations. I am also 25 years old, contemplating double mastectomy due to BRCA 2 this summer, and diagnosed with POTs. I want to get the surgery done because I know that having POTS makes me more vulnerable to fatigue and I can't imagine doing the surgery AND cancer treatments. I am currently single and have never had kids. It's strange to imagine this surgery in light of that fact. But on the other hand, while I may not be able to breastfeed, I will be around for them, no black cloud over my head. It's tough though. I feel like my options are surgery now or surgery with cancer treatments. The thought of either makes my skin crawl. Sometimes having this knowledge does feel like a curse. On the other hand, by doing the surgery as  a preventative, I feel like there's a victoroy note to it, a powerful feeling of offense rather than an uphill defense. Anyways, just wanted to reach out as someone else going through similar things. 

sonyarizzo1
by Member on May. 13, 2014 at 8:04 AM
1 mom liked this

Hello,

I am so sorry that you are going through all of this. I currently have stage 4 breast cancer, and I think it is so smart of you to get the prophylactic double mastectomy. I had a double when I was 35. I am now 38 and I can't say I hate my new boobs. It takes some getting used to becasue they are slightly harder than my old ones. But I love not having to wear a bra.

I did a double with silicone implants. I was able to keep my nipples. once your insurance kicks in, you should look for the best plastic surgeon in your area. That is what I did and he did a fantiastic job! I don't feel like I lost MY boobs at all. It only looks like I got a boob job. The scar is under my breast and because I have large breasts, you can't see the scars at all. They have actually faded a lot! There is no reason why you shouldn't be able to keep your nipples. I had 6 tumors in one breast and they were all far enough away from the nipple that I was able to keep them. You have no tumors so you should definitely be able to keep them. If you go to a dr who tells you no, then I would switch doctors!

As you have heard from your family members, the mastectomy is no walk in the park...but it's so much better than having cancer. I also had my ovaries removed and that was the easiest surgury I have ever had. Menopause isn't so easy. The hardest part is the hot flashes..but you get used to it.

Good luck with everything:)

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