Nipple Sparing Mastectomy with immediate reconstruction

NewBride

PB22,  It may be chemo for me.  I don't know all of the details but the gist of it was that 11 Doctors concur that it is better to overtreat than undertreat.  I can't help feeling like I'm hunting a hummingbird with a howitzer.  I mean what if we miss and end up destroying a bunch of other stuff.  Oncotype DX is not back yet so that may shed a little more light on the subject.  I don't know if I can even have chemo until this incision heals.  I guess the good news is no surgery to go back in for nodes.  PS told me not to resume vitamins and supplements in case of more surgery but it doesn't look like that is going to happen so I've started back up on multi-vite, gingko biloba, ginseng, zinc and even aspirin in an attempt to stimulate blood flow in the area of my nipple.  I think it may be working .  Nipple looks a little happier today.  Have appt to look into hyperbaric treatment on Fri. right before PS appt.  We'll see how it all goes.  Please continue to pray for me as this is starting to look a little scarier than I ever thought it would be.  Thanks.  I'm glad your ROM is better.  Just ignore the gym nazis.  You're doing great.  And if you do want revision surgery it's an outpatient thing and not nearly as debilitating/painful as MX.  You'll be fine and at least you don't have to make any quick decisions about it.  You can take your time about it.   My PS is looking at my belly as a donor site for fat injections to achieve more fullnes if necessary.

I'll keep everyone posted.  The hyperbaric stuff may turn out to be interesting info for nipple sparers.

PS73

Thanks for the nice comments girls.   PB - glad to hear you have full range, I was really concerned about that, did you have alloderm graft?  I have some concerns about lifting things over my head at an angle - like 20ish pounds with one hand, I was told that part of that muscle may never heal properly- like doing push ups -some ppl can never do them again post op.  It is so awesome to hear that many of you are working out.  ..and I have also heard that the exchange is not as bad.  Also, thanks for the pep talk - I am just tired of being sick - the winter is making it worse.  Ill be ok though, this is tough but Im a pretty tough bird. 

NB - What is hyperbaric?  Good luck with the oncotype - there are some alternatives but of course they are not approved by FDA as cancer treatments.  There is a long line of disbelievers out there but they make sense to me, which is very easy for me to say since I did chemo and feel that security blanket.  I completely understand where you are coming from.  The scariest part of chemo for me was before doing it.  I am about to start the alts so techincally ill have done both.   Also, I have a friend who has done only alternative if you would like to ask her questions. But note that if you do chemo, its not as bad as you think.  ..also depending on the chemo rec, you may not lose your hair.  Each person is different but since you are young, Im sure your onc wants you to do it.  Im not familiar with that type of cancer and what your suggested chemo would be - did they say? I did ACTH- had some bad days but I did dose dense which required the white blood cell booster shots, which were the worse part for me.  I also re-did my kitchen while going thru chemo to give you an idea of the good days   

carolehalston

Hi, everyone.  I noticed this thread among the Most Active just now.  Hello to Ally and NewBride, friends from the One-Step with Alloderm thread.  I had Nipple Sparing BMX/1step w/Alloderm 6 mos. ago.  I'm much older than the rest of you.  I'll be 67 in March.  My encouraging news is that at 6 mos. out, I feel great except for SEs from taking Arimidex, a med that blocks all estrogen production.  My main SEs are mild hot flashes and joint aches and pains.  Exercise helps the achiness, so I try to keep active.

I had to laugh when someone on this thread joked that she never thought she'd be so focused on boobs!  At one point in my recovery I started to wonder if my life would ever get back to "normal" when boobs were inconsequential except for occasional bra shopping or when apptments for a mammogram rolled around.  It does happen that you begin a "new normal" and your thoughts are centered on the activities in your life.

I'm an avid golfer.  One of my main concerns after hoping to stay alive was "will I be able to play golf after this ordeal?"  My PS promised me I should be back to golf after 8 wks.  That was pushed to 10 wks when I had to have revision surgery to trim necrotic skin off my left incision on the healthy breast.  Ironically, the breast with the cancer healed better. 

I'm not a workout fanatic but I walk 3 mi. on the average of 4 or 5 times a week.  Dh and I have a little home gym with equipment and I do some weights and sometimes ride the recumbent bike when the weather is bad.  I'm tending to avoid exerises that would develop the pecs.  My PS warned me against the presses.  He said he'd seen women end up with their implants under their arms. 

Both nipples look perfectly normal now but the placement is slightly askew because my right implant is a little higher than the left.  The PS is bound and determined to get me back into surgery to achieve better symmetry.  He also wants to replace the implants with larger ones.  I don't know whether I'll go along with him or not. 

NewBride, I'm praying that you receive a low oncotype number and can avoid chemo, as I did, and I was also grade 3.  Waiting to learn my number was a most anxious period.  I started a thread asking for women with grade 3 to check in and report their oncotype number.  It was so heart-warming to get all the responses and supportive words.

I wish all of us good health and happy lives. 

NewBride

Hi Carole,  TNLady started this thread and is also an "alumnus" of the 1Step thread.  The ladies here are wonderful too.  I know your participation here will be more than welcome.  Thank you for the prayers.  It sure looks like I can use them.  I would like to read your Grade 3 thread.  In which forum will I find it?

PB22

Hi Carole,  thanks for your insight. It was me who thought all I did was think about boobs.  For some of the others, its nipples. I just started the arimidex.

PS73,  At PT today, the therapist told me my range of motion is perfect and can't do better.  I did not have alloderm but the competetor, surgimend mesh.  Sounds like you need a break from that cold weather up there, only so much you can do when its that cold out.

Newbride,  sounds like they are airing onthe side of caution with the chemo recommendation, but the oncotype will tell.  Could take several weeks to get back.  You have time as you are healing.  I didn't think you would need to go back for any nodes as its just a diagnostic indicator.  A person can be node neg and get a recurrence or have it in their nodes and never get a recurrance. Just another indicator.  My grade was low and my oncotype score was 15, higher than Caroles, so I'm thinking positive that your score will be low.  When my onc told me that I would not need chemo, she asked my husband if that was all right with him.  My onc. went on to explain that 7 years ago they would give chemo to a young girl who has her life ahead of her , called "the cute factor" and if someone say 60 and frumpy was in they would say oh, you don't need chemo.  So use your gut instinct if its right for you as there could be side effect later down the road from it.

My onc put me on some supplements as well, fish oils, ca, resterovol, baby aspirin, Vit D, and a muiltivit with selenium and lycopeine. 

Tomorrow is the PS.  Seems like we all count down the days to our next PS appt. 

fairportlady55

Hi to everyone....I've been off line a couple of days. I am wondering how many cc's of saline you get on the average with each fill? I have had 3 fills so far, once a week, and I dont seem able to tolerate more than 40 cc in each. My PS says he has patients who get 80 - 100 and seems surprised that I tolerate such a small amount. I know my pecs are very strong because I was a regular exercise person, and that is probably why, but if its going to take months to get up to where they can schedule the exchange, maybe I need to try to take more? The evening of the day of a fill is bad, lots of spasms, little sleep, usually the following day is hard too. Ugh, this is so frustrating and uncomfortable, and a date for the exchange seems far far away! Thanks for being there and such a support. Having chemo on top of all this I can only imagine, and for all of you who are, my good thoughts and prayers are with you.

cindydeemiller

http://www.ucsfbreastcarecenter.org/reconst_latex_1week.html

the website above gives pre and post op exercises for lattisimuss dorsi reconstruction. However, I have had both the latissimuss and the nipple sparing and the exercises are good for both.

Add these additional exercises:

SELF-MASSAGE: All tissue that has been injured goes through stages of healing. As the healing process continues, it is not unusual for the tissues to get tight and inflexible. Surgical scars, no matter where, can be a problem. They tend to bind to the layers of soft tissue under them. However, you can decrease this binding and mobilize the scar(s) by simply moving the tissue and massaging the area will help it return to normal. You can begin self-massage when your dressing is off and your incisions are without scabs. If one area is healing slowly, you can still massage other parts of the scar or the rest of the breast. Be very gentle over the scar since it is more fragile than other skin. Begin by lying on your back and picturing your breast area as a face of a clock. Use a hand cream so that you fingers slide over the skin. Touch your breast and see how the tissues move. When you find an area that feels not as mobile, make a mental note of what clock number. Start the massage with gentle stroking and circles. Go deeper into the tissue as tolerated. DO NOT CAUSE PAIN. The other surgical scars also need massage. Start slowly and then go deeper. Stroke in the direction of the scar and then across. Eventually you will be able to lift and roll the scar between you fingers. Keep adding more lotion as needed. Massage for one song, three times a day. You can spend the whole song on one area, but make sure all problem areas are massaged at least once a day.

• Pre-Operative Exercises
• Post-Operative Exercises
• Exercises to do while in the Hospital
• Exercises for 1 Week Post-Surgery
• Exercises for 3 Weeks Post-Surgery
• Exercises for 6 Weeks Post-Surgery

TNLady

PB,  I agree with NewBride, ignore those gym Nazis and keep up the good work!  You are getting me motivated!

NewBride,  I am an avid reader too.  Reading is my escape also, especially during the winter months.  I have read Angels and Demons (loved it), and I have The Symbol and The Davinci Code, but I have not read them yet. I have been reading Janet Evanovich's Stephanie Plum series.  The situations the main character gets herself into makes me laugh out loud.  You are so lucky to live near Yosemite, I bet you have lots of beautiful places to walk and hike.  I don't live far from the Smoky Mountains National Park, so we go and hike occasionally.   I wish you the best of luck with your test results tomorrow.  I think people will be interested in hearing how the hyperbaric chamber works also, so do keep us posted.

Carole,  Welcome!  We look forward to any  knowledge and advice you can share with us!  So glad to have you!

 PS, again we are glad to have you back!  Maybe you should rent a few comedies this weekend to cheer you up.  We signed up for Netflix before my surgery so I would have something to look at during recovery.  I love it!  It has all kinds of movies, especially the old ones you don't see much anymore.  I watched Tootsie the first week and laughed so much it hurt.

Best wishes to all!

TNLady

Cindy,  Thank you for posting the exercise sites, those will be very helpful to us!  How are you feeling?

FairportLady,  nice to see you back!  Sorry you are having to deal with the pain.  One of the other ladies will have to answer your questions about the fills, I did not have TE's, so I am unable to answer that question.  It sucks to have to go through any part of this, but I agree that it's nice to have people to talk to about it and a place to express our feelings.  We also have the added bonus of helping others by sharing our experiences.  Keep positive and your exchange will be here before you know it.

PS73

Hi TN - thanks for the advice - tootsie is a good one -Ill put it on my netflix!  Books sound good too - all Ive been reading are cancer books!  I have the piano teacher, has anybody read that?  It was given to me but I haven't picked it up yet. 

PB - word!  I am so ready for the sun! ..congrats on the full range of motion.  How many weeks out are you again? 

FL - I had a fill the other day and have had three so far - the most my PS gives me, I think is 50cc's.  He is all about slow progression.

Question about the massaging, can you do that with TEs or is it only post exchange?

*I spoke to my PS about the gummies/410s and he said he worked with them a lot at sloan and they are still not available here in the US for everyone.  Even if they were, he told me that they are not circular and if the circulars do eventually become available, he would recommend that shape vs the current shape.  Apparently, if  the current shape available spins at the pocket site, then you might find them to be troublesome.  With that said, he said its all preference - he finds that because the material is tacky on the outside they tend to stay where they are.  He gave me the example of sunbathing on my stomach, and if I were to stand up, they would remain up high.  He said that the benefit for them though is that they look nice and full.

fairportlady55

Hi PS  thanks for sharing that! I was beginning to think my progresion was unusually slow or my pain tolerence low (which I do not think it is!) other girls have advised slow and steady too, so I think I need to chill and get used to the idea that this isnt something that is going to be a quick fix.

TN thanks for the encouraging words too:)    By the way, I have read The Lost Symbol....wow it was great! Now THAT is a book that will get your mind off of all this stuff, but be prepared to lose a little sleep: the end of every chapter is a cliff-hanger so its pretty hard to stop reading once you start! 

PB22

Fairportlady:  How many weeks post op are you now?

Post op week 8:  graduated from PT for range of motion.  Still sore in chest area.  No meds needed but the skin is sore. Some numbness on right side of both breasts.  Ca side(rt) is tighter and hasn't dropped as far as left. Follow up yesterday with PS.  He said all the healing will be done at 6 months but am considered healed now if I wanted to change out implants to a fuller size for the upper pole fullness and width, provides only 1cm more projection so mainly its to fill up where the scraping was done at the 1:00 quandrant.  I am going to wait and decide at 6 months as it will put me in June when school is out. Said downtime only a long weekend.  I am working so hard on the massages and scar creams I hate to think about another incision although he said it would be small and there is no cutting of any nerves.  My husband asked if this will go on and on.My implants are mentor cohesive gel 375cc, PS suggests 500cc. I am 5ft 5 and wt fluctuates sometimes as high as 128.  Bra band measures 29 in, which put me at around a 34, currently a B,  on initial placement I wanted what I was a large C with a lift placing me at a C.  I am very happy with my size with bra on, its perfect, pwerky, healthy and youthful, but with bra off and no clothes I think I would still look too flat in a bathing suit top when lying down.  Does that make sense??    Sounds like a big jump but apparently the differences are in small measurment.

  PS gave go ahead to lift weights , even bench press.  I am still hesitate and look at the floor and wonder even if I could hold a plank.    The pain is so fresh in my mind, I'm not in a hurry.

TN:  Did you write you were a 500cc implant? Are you happy and what is your frame, any comments on the upper fullness? What is your look if you were to sunbath on your back?

A minor inconvenience, but non the less an inconvenience, the mentor ID card for medical device I went home from the hospital with was only partially filled out. The cc was recorded on each card but no catologue number or serial number.  I brought the blank cards to the PS and he didn't have it in his office record or on his OR report which surprised me.  We are waiting for the hospital OR report to be faxed.  Its frustrating because how many hands did these cards pass through to make it to my tray table and no one looked at them.(even us).  I did expect the PS to have the info.  Lets see how long it takes for me to get the info and how many phone calls it will take.

NewBride

16 days post-op.Oh yeah!  I got my drain out! YAY!  I even did my no drain dance in the PS office.  Even better, PS thinks the nipple is going to be OK.  It will take some time (about 6 weeks) but it looks like it's healing.  This is particularly good as I was not too impressed with the hyperbaric chamber people.  If the nipple starts to fail I may change my mind but right now I'm declining hyperbaric treatment.  I know of cases where it has helped but I just didn't think the chiropactor in charge of this place was very professional.  Didn't even look at the wound he would be trying to heal nor any of my records.  Just interested in signing me up for 20 sessions and cold laser treatment to boot.  I've got alot of other thingts I'd rather spend $3500 on.

fairportlady55

Hi PB I am 3 1/2 weeks post op,,,,,,,,,

carolehalston

PB22, your PS told you the downtime from replacing your implants with larger implants would be only a long weekend?  I'm 6 mos out and my PS wants to replace my 457 cc Natrelle implants with larger ones about 570 cc.  I haven't committed to the idea because I thought the trip back to surgery would involve at least a month of recovery.  At this point I can do just about anything I was able to do prior to BMX/immed. recon. 

I had to smile at your husband's comment, Does it ever end?  I had what is called the 1-step, and it can be the 1-step if you accept the result.  But it's more like the "1-step at a time"!

NewBride, would you have had to pay for the hyperbaric treatments yourself?  I assumed insurance would cover it.

TNLady

PB,  I have the mentor 650 high profile implants in both breasts.  I am 5"3' and weigh 135 pounds.  I am happy with the size, I am close to what I was before, which was a large C.  I have fullness in the upper pole, which I did not have before, due to the middle age sag.  I had the same problem with my cards, nothing but the cc's was listed.  I had to ask about it when I went back for my office visit.  They did some scrambling, but found the numbers.  Well, as far as the bathing suit thing, I'm not too sure how they will look yet.  I still have a lot of firmness in the one breast, so I'm not sure how good they will look yet.  I still have some time before summer gets here, so maybe by then, the one breast will soften up more.  The soft one looks and moves like a real boob, so if they both soften up, I think they will look pretty good in a bathing suit.  I know you don't want to go through another surgery, but if you are not happy with the look, I would go for it.   I don't think the exchange surgery would be as difficult as the mastectomy.  What does your PS say about it?  Well, whatever anyone else says, you are the one that has to be happy with them.

 NewBride,  I'm glad your nipple is healing well and that the PS thinks it looks good.  Sorry to hear the hyperbaric people were not up to par.  Is there another place you could try?  That sounds like a lot of money, I'm like Carole, does insurance not cover it, or is it considered experimental?

Fairport,  my Dad said the same thing about The Lost Symbol, I will start it when I finish the series I'm on now.  I have even started a new hobby, knitting!  I find it very relaxing.

 Positive vibes sent to all!  PS I hope you are doing well.

PB22

Carole:  Yes, he said to do it over  a three day weekend if I was worried about down time. He also told me after I complained of pain at 4 weeks that it was uncommon and suggested a "spin class" at the gym.  My husband jumped in and told him I couldn't even handle the bumps of the car ride to see him.  So I imagine its more than a three day weekend at least with my pain intolerance.  He did describe it as outpatient , 30 minute procedure and its a much smaller incision, slip one out and slip one back in.  You go first carole, and let me know!  LOL, I will rename our procedure as the "One Step at a Time"  At least the PS has solutions to fixing what we don't like so we can be happy.  I can see where you wouldn't want to lose that golf swing of yours.  I should be getting a frequent customer card.

Newbride:  Congratulations on getting the drain out.  Big step in the right direction, soon you'll be shaving again.

Fairport:  You still have a good three weeks yet to go to feel normal again, but one more should be your turning point where you see some change in the pain level.

TN: Thanks for your feedback.  I can see where you live you are not sunbathing yet.

fairportlady55

PB  thanks for your feedback. I needed a reminder that it was MAJOR surgery and its not all that long ago. My next fill is tomorrow,,,,Its actually a visit I look fwd to each week as it is reassuring to have my PS look at how I'm healing . One nipple looks really good, the other: not so much. 

Im thinking about when to return to work, how I do after my fill tomorrow will be a big factor in my decision.I think working might be good to help me think about something other than my TEs and nipples (I know you all know what I mean!:) but I dont want it to be painful and exhausting and as of today I still am not feeling "normal".

Heres hoping for a good week for everyone,,, 

NewBride

Carole and TNLady, It's possible that insurance would pay for hyperbaric treatment if it were provided through a hospital burn center or something else a little more conventional far as medicine is concerned.  The place that is available to me specializes in chiropractic and other alternative healing methods.  They told me, even before my visit there, no insurance will pay for it.  Frankly, in the case of this place, I can see why.  I got a distinct feeling of quackery about it. 

I'll just have to hang in there with the Silvadene and be patient. I'll see PS every week to check the progress of my healing and trim eschar as it separates from new  skin.  If things take a turn for the worse I may look for hyperbaric treatment outside of my area.

PB, Losing the drain was fantastic and I can't wait to be able to shave my legs comfortably.  I have been shaving under my arms since about day 6 post-op.  I would have looked like I had a poodle under each arm otherwise.

Jan. 20, 2010 Left breast nipple sparing MX. Immediate 1Step reconstruction with Alloderm. No SNB
Diagnosis: 10/27/2009, DCIS, 4cm, Grade 3, 0/0 nodes, ER+/PR-

TNLady

NewBride, I like your comment about the poodle under the arms, I had the same problem.  I still have a hard time shaving under the arm I had the lymph nodes removed, it is like a crater under there and I still don't have complete feeling back.    I have to get help with that one.  I'm so glad you have your drains out, that is such a big relief-it's freedom!

Fairport, I hope your nipple is looking better and your fills are going good.

7 weeks post-op report:  Feeling much better.  My left breast is feeling more and more like a real boob now, much softer.  My right breast is still harder, but softening up some.  Still can't reach as high with my right side.  I seem to be getting more energy and  I am able to more each day. 

 PB and PS I'm thinking of you!  Best wishes to all!

fairportlady55

TN lady:so happy that you are feeling better now that you are 7 weeks post op! Had my 4th fill yesterday: BAD night last night and into today too with muscle spasms. This is the worst yet, but I don't want so slow things up (like going to every other week for fills or going in to have him take a few cc's out) I am taking the muscle relaxantl and trying some range of motion stretches to deal with the spasms and am slightly better as I write this. One nice thing: my dog knows somethings up: he hasn't left my side and keeps getting in my lap to comfort me....so sweet. It actually helps some: feels like a hot water bottle or heating pad!

my best to all you ladies : thinking of you and sending hugs and best wishes  

PB22

Fairport:  My dog was the same. I spent 4 weeks in bed and he stayed right beside me. He didn't want to play and never went after my drains.  How many more fills left after this one?

TN: Good to hear yours are settling.  My breast cancer side is still firm. Had my co workers over and showed off my docs handiwork.

Newbride:  what week are you in now?

lmnop35

I've been reading through this thread and it has been very encouraging. I'm 35 yrs old and have just been diagnosed with DCIS. As far as I know, it's stage 0, I guess I won't know that entirely until some form of surgery is done. Everyone is pushing me towards the route of lumpectomy/radiation but I have so many concerns about radiation and recurrence, especially because of my age. The doctors give you such great survival rates, but when you look at the fine print, those are only rates for 10 years. Guess what - in 10 years I would still be considered young for breast cancer. So I am STRONGLY leaning towards a bilateral mastectomy. I'm still researching so no decision is made yet. It seems many of you did the second breast propholactically, and I'm curious if this was covered by your health insurance. I've tried contacting my insurance company and they are useless.

 I love the idea of doing the implants at the same time as the mastectomy, especially if can spare my nipples.

 Thanks!!!

Laura

fairportlady55

PB loved your story: dogs rule! My PS says once I have the size I want (judging by how much projection I have) then he fills 50% above that then I would get the exchange 3 weeks later. I am petite (5ft 3 in 115 lbs) I have as of now 220 cc in each, he thinks 300 tops but maybe less so Im guessing about 4 more fills . I cant imagine that as of tonight because I am still sooo uncomfortable but usually after 48 hrs I feel a lot better.One thing new and very positive: I actually look like I have boobs now: and perky nice ones at that! 

Imnop (Laura) welcome! But sorry you are having to deal with all that. I am very new to this, had BMx and TEs Jan.11. My diagnosis was atypical ductal and lobular hyperplasia. My surgery was  prophylactic and even though I am in a challenging stage of the process right now (translation: muscle spasms suck!) I have no regrets: the thought of close monitoring, future biopsy's and all the stress of literally waiting for a malignancy (that the odds were quite high for) reminds me how lucky I am to have had this choice to make .Cosmetically  the skin and nipple sparing surgery is such a great option and I am just now getting an idea of how that will be working out for me and Im feeling even better about my decision. Of course everyone is different but like I said: no regrets here!

NewBride

Hello to all of you.  I am now 3 weeks post-op. The healing continues.  I'm carefully getting back into a normal routine.  There are a few motions that still hurt but I think it will all be OK in the long run.  Losing that drain was the best.  I was getting kind of tired of buttons too so it is nice to be able to pull a T-shirt over my head.  The nipple continues to make slow progress but every day it seems to look a little better.  I have appts. with BS and OC at the end of next week.  I should get my Oncotype DX score then and find out what happens next.  The last thing I heard was probably chemo.  All I can do right now is pray everything will work out.  I am starting to get nervous about it.

lmnop,  So young to join us here.  Do you have a strong family history of BC?  Has your doctor recommended getting tested for the BRAC gene?  If your insurance provider is less than helpful, talk to your breast surgeon about insurance coverage for prophylactic MX.

Pets are great.  My normally tempermental siamese cat has been so sweet since I came home from the hospital.  She slept every night with me in the recliner for the 2 weeks that I was there.

fairportlady,  When I had my drain removed I took a Vicodin about 1 hour before my PS appt.  It really helped alot.  Would it be possible for you to take some pain med on the days that you have fills?

I hope everyone is doing well.  I'll check back later.

lmnop35

I actually have NO family history at all! I will be doing the genetic testing, which will weigh heavily in making my final decision.

I've also been struggling with fertility over the past few years so my body is not at the top of my list right now. Betrayal!

PS73

Hey gals, I hope everyone is recovering well.  NB - how are your nips feeling?  Sending prayers for all of our nips to heal nicely.

Im five weeks post op and doing ok - my range of motion seems to be getting better but I do tend to get stuck while reaching for the glasses in the cabinets.  I started carefully walking my dog again and once I get my real (fake) boobs I look forward to running.  I bought my first non-underwire bra since I was fourteen - so funny, but wow I guess this is the silver lining for having to go thru this drama!!!

Imnop  - Im so sorry to hear about your dx.  I understand where you are coming from - I started with a lumpectomy and just prior to rads I opted for the bmx.  There was so much information coming at me at time of dx, I couldn't wrap my head around all of it.  Then and now, I still I feel that bmx is very radical - but Im 100% on my decision and feel it was the right thing for me to do.  Regarding the brca gene, I believe I read somewhere that family history only accounts for 15% of breast cancer and it seems right because more than less of the women Ive connected with who have BC have had no family history. So at time of decision making I was told by my BS that a lumpectomy with rads is the same recurrence rate as a bmx give or take a few percentage points.  However, what was not told to me until a few months ago was that a new cancer popping up increases over time at approx. 1% a year and apparently once you have breast cancer you are now in a slightly more narrow window of getting a new version of breast cancer.  I don't mean to scare you and obv not make light of it whatsoever, Im just passing information along that was given to me by my drs and this was one of the reasons (amongst others) for my bmx.  I would confirm my numbers with your onc to be sure since the villainous chemo brain is living inside of me. Hang in there sounds so f** cliche but do so if you can

lmnop35

PS73: Thank you for your input. It is definitely the increasing percentage over time that is getting to me. At 35, with no kids yet, I hope to have a long life to look forward to and knowing that that number goes up all the time keeps me awake at night. My husband thought I was being very radical at thinking about the BMX at first, but the more we talk and I tell him my concerns, the more he seems to be coming around. I have a few more appts to get more info on radiation and the BMX surgery (which I am super scared of) and then hopefully I'll feel more prepared. Like you, there was so much coming at me at the time of the dx (which was only a week ago) that I really didn't absorb very much. I was too busy trying to get up after that truck hit me! I was happy to follow the path of least resistance. But now I feel like I have to get all the info and do what's best for me even if it's harder. My biggest prayer right now is that the gene test will be negative. I don't want my sister and neices to have to deal with this. And it will greatly impact my decision to have a baby.

TNLady

Imnop, you are smart to look at all options and by talking with others that have been through the same decision making process.  I remember what a shock it was to me when I found out I had DCIS.  I was lucky to have found breastcancer.org.  I did a lot of research on both options and read many of the posts on other threads here.  I did have prophylactic on the side I did not have cancer in, and my insurance did cover it.  I do not regret my decision at all.  I did not want to go through radiation.  I have read on other posts the difficulty other woman have had with nipple or skin sparing after radiation.  Radiation can damage the skin and make it hard to do the nipple or skin sparing if you have skin damage.  I wanted to save my skin and did not want to take the chance of not being able to do it in the future. It is a hard decision to make and I'm sure everyone is telling you that you are the only one who can decide.  I remember thinking that I just wish my doctor would make the decision, why did he have to give me options?  I read on a post that the reason the doctors leave the decision to us, is that they cannot tell us to take out good tissue.  I don't know if that is true or not, but it makes sense.  It worked out for me in the long run, they found A-typical tissue in the prophylactic breast after surgery.  To me, the decision process was the most difficult time during this whole thing.  My doctor set up appointments with both a plastic surgeon and a radiation oncologist, so I could look at both options.  Even though I was already leaning towards a BMX, he thought it would be a good idea to talk to both doctors.  Once I made the decision and made my appointment for surgery, it was like something had been lifted off of me.  We are here to help you with any of your questions.  

carolehalston

I believe it's law that insurance companies must pay for reconstruction when a bc patient elects MX.  And must pay for the prophy MX and reconstruction as well. 

Imnop, what a rotten deal for a 35-yr-old woman to have to deal with bc.  I elected BMX when I went for my first consultation with my BS (breast surgeon, who was also my breast specialist).  Dh was with me and completely agreed with my choice.  But I'm 66 and my main concern was staying alive and doing whatever I could to avoid a future dx of bc.  I'd had my breasts a lot of years.  The thought of losing them was worse than the reality.  I've adjusted very well to my reconstructed breasts.

With all that said, I absolutely agree with TN that I would think long and hard about radiation and the damage it could do to your skin.  I've read quite a few posts by women who had lumpectomies and radiation, then later on had either another primary bc or recurrence.  As young as you are, you probably want to check into DIEP, which was an option for me since I live near New Orleans and the NOLA drs. are highly recommended for DIEP. 

Best of luck.