Nipple Sparing Mastectomy with immediate reconstruction
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mom & TNLady: I know I opted NOT to do BRCA and now find myself questioning that decision sometimes since maybe I would have done a double mx instead of just left only. I did OncotypeDX testing and insurance paid for that. For BRCA I would have found myself paying quite a bit out of pocket since my insurance would only pay so much for. My BS gave me a video to watch first to decide if I wanted to do it. I didn't fit into any of the "high risk" catagories listed. No family history either. I asked my daughter first (she is 27) and she flat out said that she would not want to know because she would worry too much, so I didn't do it.
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Bcincolorad: I understand, I was asked every year at my GYN appt if I wanted to test. I wasn't sure if I wanted to know. My insurance is covering it 100% because 1. I have been diagnosed with cancer, and 2. My family history. Every female in my family has had breast cancer with the exception of my great aunt... She had ovarian. My dad was dealing with prostrate cancer last year which they say could also be tied to the gene. My sister was tested a number of years ago and she was negative. My BS said that even if its neg, it doesn't mean that there isn't something else going on there. It doesn't help that I also come from a line on Ashanti jews in which the gene tends to be more rampant as well. My decision to go for the BMX was because for me it wasn't if the cancer came back but when.I always knew I would be dealing with this but I thought I would have another 10 years or so. BRCA at this point for me is more for the ovaries.
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It was the same thinking for me "not if the cancer comes back but when". My mother had it, her aunts and my father had prostate cancer. I tested neg for the BRCA, but still think there is something familial going on making me susceptable to the hormone receptive cancers that they do not test for yet.Mine was 100% covered by blue cross. Now if I had the BRCA done as a younger person i tmay have given me a false sense of low risk and perhaps I wouldn't have been so diligent in having my yearly screenings.
Mom2aej: we both have the same surgery dates and Gulp is around that time.
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Its helpful to hear everyone's thoughts here. I didnt get the BRCA testing, felt if it was negative it would not change the fact that my family history is so overwhelming there has to be something going on: Mom breast and ovarian, one GM breast the other GM ovarian, one aunt breast, another ovarian, virtually every relative who has died had cancer of some sort. I knew the day would come and although mine was atypical ductal and lobular hyperplasia it was enough for me. I have a 22 year old daughter, and since in addition to my family her paternal GM died of breast cancer in her early 40's I am talking to her about genetic counseling: let the experts advise us what testing we should do. PB: I agree, I think f I had tested BRCA negative it may have given me a false sense of security and who knows: maybe I wouldnt have been as compliant with annual mammograms, and that hyperplasia would have had time to progress.
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Well I got my BRCA results today. Positive for BRCA 1. Now more stuff to try to figure out and schedule.
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Mom2aej: Wow. Ok . so now you know what you are dealing with. Im sorry about the result,
but now you are empowered to take action and make decisions. You asked the question, you got an answer: and I can tell from your postings you are a smart brave lady that can take that information and go forward. My thoughts are with you!!!!!
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Sorry to hear the results, Mom2aej.I know it's a hard decision to have the test. I wish you all the best with figuring out stuff. It's a complicated thing. I tested negative for it but still decided to have a bmx. I mainly did it to decide about the ovaries. I think there are probably a lot of genetic mutations that haven't been identified yet - I know a lot of women who have extensive breast ca hxs in their families but tested negative. I don't have family hx but it was recommended because I had two different unrelated cancers in both breasts under age 50. My family is so small, with so few women it was thought that I would be positive. Anyway I hope you are doing okay.
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Mom, sorry for the bad news, you are in my thoughts and prayers.0
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Mom: I am so sorry to hear about your results. You are in my thoughts and prayers as you decide what to do.
It's amazing how many have strong family history of BC. I only have both grandfathers with colon cancer and one also had bladder cancer.
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Mom, this is a difficult time for you. You are in my prayers.
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Thanks all.
Gulp I did the testing for the same reason. I had already resolved to loose the breasts. (pretty much done with them) It was the ovaries that were in question. Now I have to see how that fits into the schedule of things.
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I am considering having a nipple sparing mastectomy with implant construction on my non-cancerous breast. Quick question-do you have sensation in the nipple, or are all of the nerves severed?
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PB22-
I was reading through some of these older posts and I saw what you had written about feeling the cold when you drink cold drinks. I have the same thing! I asked my PS about it but she said she hadn't heard of anyone having that after mastectomy.
It feels so strange but I guess, like everything, you get used to it.
Kate
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Kate33: I can now tolerate cold beverages, my nerves must have healed or gotten use to it. As a matter of fact, I had not realized I was drinking from the frig until you mentioned it. Thanks for reminding me , at least something returned to normal.
Dharmama: I would count on no sensation. The nipples perk up in the shower. No sensations that travel inside, sensual or otherwise. The closest I can equate it to is the skin on your thigh, gently rub a folded paper clip across it, the outer skin feels it but not interior. Some parts of the breast where nerves are cut are totally still numb.
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dharmama and Kate33, Welcome!
Kate, I don't have the sensation in my chest anymore, unless I drink a slushy or something very cold. How long ago did you have surgery?
dharmama, I can't explain it any better than PB, she explained it precisely. I have the loss of feeling, but feel very fortunate to have been able to keep my nipples.
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dharmama: I haven't had exchange yet but I feel like I have a lot of feeling in mine still. I have not been able to wear a bra at all because it hurts me too much. If I don't put on something under my clothes though (I wear a cotton cami) I can feel my nipple rub on my clothes and it gets irritated. I think maybe how much feeling you have might just be a little different for eveyrone and how they heal. I sure didn't have the cold/warm sensations that some of the other women have at all.
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I am one of those women who 'faithfully' kept ice on my left breast after I developed a large hematoma after my second biopsy (first biopsy was a breeze)... after a couple days of ice, I started heat. I ended up with a terrible burn from the heat or was it frostbite from the ice!?!? I had never had any problems with lack of sensation in my breast so I wasn't even thinking about getting a burn. So, whoever is reading this please "BE CAREFUL" when experiencing the numbness.
So, now I'm a bit skiddish about my surgery April 27th. I trust my surgeons, and I still haven't made a final decision as to whether BMX or Segmental MX with reconstruction/lift bilaterally. I'm getting really nervous now, although the sudden crying spells on drive home from work have decreased. The waiting has been so hard, and I feel ok physically...has anyone ever felt like they really DON'T have breast cancer and maybe this was just a mistake? It just feels very unreal at times, well, most of the time.
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TNLady, I'm so grateful for this forum...and having stumbled upon it! It has been very comforting. I'm sure you remember what it was like feeling like Alice in wonderland falling through the hole just grasping for whatever information you could find. Looking for peace and comfort ANYWHERE! I was dx'd with DCIS several weeks ago and am about to undergo BLM. I am fortunate in the fact that I work in surgical oncology and am colleagues with my Onc. and PS. There is a HIGH level of trust already established. I can say it doesn't make the dx any easier to accept. Hearing others who have walked this path share their personal stories has helped tremendously. THANK YOU!! I know the medical side all to well, it is the personal side I don't undersand and it is this side I am SO fearful of.
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Welcome GAgirl01, the downside of being in the medical profession is that everyone assumes you know everything and they don't explain anything. I found that to be with the nurses. Being a nurse yourself and having to go through this personally, you will be an asset to those who follow in your care. Keep us posted with your surg. dates. We are all to share our experiences.
Hi Janny, its all so surreal because we all felt so healthy prior to dx. A test tells you there is something wrong but you don't feel ill to believe it and you go along with it. I'm still asking what just happened here. I don't even feel comfortable saying I'm a cancer survivor because I haven't had the misery of chemo/radiation and the surgery feels like a bad dream.
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Janny & GAgirl: I'm so sorry you both have to go through this! Yes, it does feel like a bad dream and not real. I had no family history and all the women in my family live to be VERY old!
Like PB22, I don't really feel like a "survivor" at this point. I'm someone who was able to miss chemo and rads but still needed 3 surgeries to get me to this point and will have one more for exchange....and of course be on meds for a VERY long time and pray it does not return in the other side.
Some women do feel like survivors though and that's ok too! We all feel differently and respect each other here.
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GAgirl01 , I just sent you a PM and know you're never alone!!
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To GAgirl01, do you feel that because you are in the medical profession that you find it easier or harder to talk about your diagnosis? For me, I find that it's easier to talk about 'the cancer' and being open with the dx with family and friends. In my case, it's made it easier for my co-workers to ask me questions about the surgery and the radiation etc etc etc. Everyone has been so supportive and caring.
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PB22 & janny99 and my other new BC family, thank you for wrapping your arms around me! It is such a welcoming feeling. Being in the medical profession, especially Surgical Oncology, I have seen both sides...the joys and pains. Now that I am experiencing this first hand, my "medical" family has been amazingly supportive (not that I am suprised). Discussing my dx was one I chose to do head on. Not only do I work in Surgical Onc.,but this is the same unit in which I will have my procedure. My closest colleagues, my Surg.Onc Dr. & PS Dr., my Anesthesia team and OR staff are all dear trusted friends and were all hand picked. Because I will be having my surgery on the same unit I work in, it was very important for me to share with them what was happening in my life. They will be instrumental in my recovery process; both emotionally and mentally. Everyone felt the same shock I did initially...I had carried this "secret" with me for the last month. I've had no symptoms, signs, sickness etc. I feel great; of course...minus the 4-5cm mass in my left breast...making me feel like a ticking time bomb! I'm extremely fortunate to have a fantastic support system in place where I work. They rallied around me, they'll be there when I wake up, through each "fill-up" boob station, the 2nd surgery to replace the expanders and they have already put together a team for our triathalon in October! Their crazy, but their my kind of crazy! They allow me time to grieve, but they don't allow me to wallow in it!! I love them for it! It's easy to talk with them @ work, and find the support I need. Often times it allows me to find proper perspective. Unfortunately, I see the grimest of cases, and although I grieve & yes, I DO have BC...so many of my patients outcomes are not as promising as my own. So far, no radiation & no chemo. I pray this remains true post-op.
God is good in my life and I have an amazing husband, & two beautiful children.
My surgery has been scheduled for May 5th...yea I know...some kind of cruel joke huh!
No Cinco de Mayo for me! Ladies...please have a margarita for me?! They won't let me have one through my IV...I already asked! LOL!
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Janny and GAgirl Welcome!
Janny, When I was first diagnosed, it all felt very surreal to me. I call it my numb stage. My emotions came out more after surgery. I would just have moments I would break down and cry over little things. Now, that I am four months out, I am feeling very much like my old self. I think even though we may not have to have all of the treatments, we are still survivors of a traumatic experience. We have to remember to take care of ourselves and understand we are going to have our ups and downs. I feel very fortunate to have such a wonderful group of woman here to share this whole process with.
GAgirl, I'm so glad to see that you are keeping your sense of humor. I know that laughter has helped me get through this whole thing. You are right about the feelings you experience when first diagnosed. I searched all over the Internet for information and just got lucky to find Breastcancer.org. We have a great support network here. You are so fortunate to have wonderful people surrounding you that you can share this with, and who are so understanding of what you are going through. I will be praying that you have a good report post-surgery.
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LISAMG~
Thanks for the PM...I replied! It was very helpful!
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GAgirl: welcome...Im a nurse too: its hard to become a patient but everyone here makes it so much better and we are here for you.
mom : hope your doing ok....
dharmama: I have only slight sensation, but a little more than before: it think over time it changes
Bad news ladies: I've developed an infection in my right breast: crap my exchange was 3/26 i thought I was in the clear. Im seeing my PS about it tomorrow but started some left over antibiotics tonight:( Hope its gonna be ok,,,,,
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Sorry about the infection Fairportlady55..hope it all works out.
My vent post for today...the TE is kicking my ass..I want to shove it down and away from my armpit. It's driving me nuts today.
I also have little or no feeling in my nipple..it will take some getting used to. But It looks beautiful and I am really happy it is still there..
Good Luck to all
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Twirlandcurl: hope your TE doesn't choke you tonight in your sleep! I've shoved mine so much today that I think I bruised my chest!
Gagirl: That is so wonderful that you have a great medical team you know and trust. I know it is different being a patient though, especially when you are the one used to taking care of other people.
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well I woke up this morning..so the TE didn't try to choke me in my sleep. I actually rolled out of bed without pain..maybe the TE enjoys being shoved around
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fairport, I hate to hear about your troubles, you will be in my prayers. You girls crack me up with your TE comments.
twirlland, shove those girls around and show them who's boss. LOL
Humor Heals! Hugs to all!
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