high family risk thinking about getting a diep flap after mast.

natalieashton

Hello ladies. I am new Here. I am resourcing having a mastectomy due to high family history. I am brac neg but my mother and grandmother both developed it. I have been looking on line for reconstruction options and thinking the diep would be best for me. But all the pictures and stories I read are all from raditon and chemo patients. I am looking for any insight from someone like Me. I am amazed of the results I see but I would like to see and hear from anyone. What did it look like final result? Did you want implants after? How long did it take you to heal? Any help ladies. Thank you!

Beesie

Were your mother and grandmother ever tested for the BRCA mutation? That's very important information to understand if your negative is a true negative (which would put you at average risk rather than high risk), or an uninformed negative (which would would mean that you could in fact be high risk despite being negative).

natalieashton

They were both negative. Theirs was estrogen based and my obgyn says based on family history I am at a very high risk even though I am negative. 

DiveCat

Have you talked to a genetic counselor/expert? Your OB/GYN is not likely a genetics expert and should, quite frankly, not be providing you risk assessments. You may still be high risk and I am not saying you are not, but a genetics expert is one to actually review your risk, the meaning of that risk, other possible testing, and your options for screening and prevention. For example, if they were ER+, chemoprevention is also an option. Also, even if you were to have a liferime risk of, say, 35% just as an example, your actual ten-year risk may be less than 3%...which may weigh into your decisions.

Were your mother and grandmother diagnosed before menopause?

There are some who do get DIEP with prophylactic surgery, but it is just more common for those with rads as implants with rads are more likely to fail. DIEP is also a more "intense" surgery as it involves more surgical sites and a longer surgery. Also, it is very specialized and requires experienced microsurgeons, which are not available everywhere. DIEP can lead to "natural" looking results than implant in some cases as it uses fatty tissue, but they still will never be like your breasts again (i.e. In terms of sensation for example) and complications can still arise (like infection, flap failure/death, necrosis). You may also be limited in size by the tissue available. Lack of sensation is also of course a factor with implants, as is potential of complications. It really comes down to personal circumstances and preferences. Many are happy with DIEP or other tissue reconstruction, many are happy with implants.

She

Having a mastectomy does not guarantee you won't get breast cancer, some breast tissue can remain. A bilateral DIEP is not an easy surgery, mine was 12.5 hours and came with a 3 month recovery, and subsequent surgeries. They have no feeling. They are not replacements or replicas of the originals. Please do more research and look at some photos. Vinnie Myers tattoos 3D nipples and has a lot of photos on his website, some are prophylactic recons. Even though you haven't had chemo or radiation your flaps can still fail, and you can still get fat necrosis. Make sure the decision you make is a well informed one.

natalieashton

I'm sorry in advance I feel like I offended some of the ladies. Here is my story. I am 24 years old I have a 5 year old daughter a grand mother who past away from bc. Before menopause. And a mother who was digonosed also before menopause. I think shewas 42, i used to ask my mom if there was anything you should've done to know or help your self out what would you have done.   And she said she would've been more pro active. Both my grandmother and mother were both brac neg as am I. But talking to a doctor in south carolinia for natural breast reconstruction he says it's a great idea especially because since I was nine years old I have been getting little metal markers in my breast marking dense tissue seeing as I am too young for mammogram. I am trying to do everything I can to make sure I can be as healthy as possible for my self and my young child. I have been resourcing this for months . I know it's a extreme surgery. Lots of risks but I would like to try to beat this monster before it may developt. And it may never I am aware of that. Thats why I came here to try to get some more information from ladies who maybe have done this or been on the same path. I have seen this cancer first hand and I know I can still get it but like I said I am trying to do everything I can to make the chances slimmer and slimmer. If you have any information please I am here to learn. Thank you. 

She

Natalie, I don't think you've said anything offensive. I hate that you have to be here. My daughter is in a similar position except it's also on her father's side of the family. I do understand why you're trying to be proactive. I think the wisest thing you can do is to go and see a surgical oncologist or breast surgeon, and couple of plastic surgeons who do flap procedures and see what they recommend. They're the experts. In many cases a surgical onc or breast surgeon performs the mastectomies and then the plastics people come in and do the reconstruction. That's why it's important to see the whole 'team'. The question I would ask first is what happens to the DIEP if I develop bc in the years to come. I'd advise my own daughter to be proactive now and also plan for future options just in case the unthinkable happens. Best to you, I'm always available by PM.

farmerlucy

I had a PBM after many years of screening, I was 51. Since we do have scary family history my daughter is potentially at risk, but thankfully there is nothing on her dad's side, so that probably knocks the familial risk down by at least 50%. Also my DIL is right now undergoing BRAC testing, since her grandmother was BRAC 1 pos, as is her mother. Even if she is positive she plans to do high risk surveillance for a while.

I so understand the fear of this beast, especially when we are introduced to it as little children. My daughter is soon to be 24. She will start the screening sometime in the next few years. As a mother my first inclination is "take the suckers off", but that is my own terror speaking, not reality. I have to remember that many advances have been made in the past few years, especially regarding diagnosis and treatment. What if she or my DIL did have a PBM, then a few years later a vaccine came out. Whew.

It is good that you are aware of all the issues. As Divecat suggested a genetic counselor might be a good place to find out your true risk. Hugs!

natalieashton

Thank you ladies. I dont know my father or his family so thats were this gets tricky. I go off my mother's side. Im waiting insurance from my job now and when I get that I am on a roll. But the issue with united I am gathering from drs I have spoken to is that once they see you the patient if I was to go for surgery even  a year later its considered "pre-exsisting" since I sought help early and then they won't cover any of it. .   but if I do what I can now outside of insurance and all different drs then they will. I would like to go to a genetics but if I dont know even his name do you think they can help? My mother's and grandmothers was from estrogen. I'm sorry I dont remember all the names and I am on a cell phone so pardon the typos. And for my other gyno issues I have been on estrogen based birth control since I was 8- no I wasn't having sex. My period just would never and I mean never stop. So my obgyn was saying since my history this may be he best thing for me. My mother amd I see the same oobgyn so it helps with things like this. I have seen some other drs work and it is great. But thankful I do not have damage fro. Radiation and chemo so I wanted to find out what drs are recommended, did anyone do nipple sparring? I am in Florida now and I was willing to travel. My health is the.most important thing. I watched my mom have to go to hyberbaric chambers because she wouldn't heal after radiation and chemo. I want to take a road wherei can choose.  as many of these woman weren't so lucky and were forced to make a choice because they had to. 

You all have my thoughts and praters

iowagirl1

I would recommend that you become as educated as possible before making a decision. Also, I set up an appointment with both the surgeon and the plastic surgeon and was talked through the entire procedure from start to finish. Then I made an a choice that is right for me. Good Luck!

sabihah

Also, check out the websites for FORCE http://www.facingourrisk.org/ and Bright Pink http://www.brightpink.org/. They both have a lot of resources for women who are considering preventive surgeries.