Prophylactic Mastectomy questions

Becky69-very well put. I had a PBMX Jan 3rd and no regrets. Still working on recovery but glad that the chances of BC are now remote! Tired also of the wait and see every 6 months, waiting for the changes to happen. A friend ( survivor) asked last night if I would do it again, my answer was definite yes but maybe a little different route. I had BMX with direct silicone implants, if I had known then what I do now, I do think I would have had the TEs with implants after. I think getting the skin and muscles to stretch and get prepared for the implants over many weeks (months) would have been easier on my body and probably could have missed the skin necrosis. But that is not what decision was made and now will just continue with the healing. Char

I am BRCA 2 + and just had a prophylactic mastectomy 2 weeks ago.   The relief I feel is amazing.  I never have to have another mammo or MRI.  My risk of getting breast cancer is less than 5%.  I had immedite implants placed and am very happy.  If I was done having kids I probably would have had DIEP though because using your own tissue appeals to me.  The implants do not feel as natural.  Good luck to you.

Gloria

Tekyry03~ I to am faced with the same decision as you. I am 44 and luckily the lump taken out was a benign papilloma. I am BRCA1 and have an extreme history of cancer in my family. I have decided to be proactive and do what I feel is best. And that is to have a pbm without reconstruction, and then have a hysterectomy. I know the decision is hard, but all you can do is pray about it and figure out what is best for you and your family. I too am afraid that something is lurking just waiting to mutate and can't wait to have it all gone where I don't have to worry about it. I would think that being proactive for your kids instead of waiting for the bomb to drop and then you have to do chemo/rads ect... would be the way to go. You can PM me anytime you need a friend. (((huggz)))

Hi--It took me 3 biopsies (all ok, but very scary) to finally decide to schedule my PBM--I'm up on 4/30. It's a tough decision, but you will do what's right for you and your family in the end. The watching, waiting and worrying was just starting to impact my quality of life. I'm 46--my mother died of breast cancer before she was 40 so I figure my clock is running out soon. Wishing you the best.

Tekyry03...

I just wanted to point you towards FORCE (Facing Our Risk Empowered). The boards there are great, as are the resources. They have their annual conference in June this year, in Philadelphia. Might be worth looking into as well!

I am high risk based on family history, and also an uninformed BRCA-negative. I am doing a PBMX on April 24. As Zeeba said, it is a tough decision (it took me a few years to wrap my head around it and start taking steps to make it happen). I will be doing recon (direct to implants). I know the PBMX does not guarantee I will not get breast cancer, but it puts things into a more tolerable risk range for me...I am pretty risk averse!  I have found I have tremendous peace since finally getting my surgery lined up, a peace that has been missing when it comes to this issue well, I am not sure I ever had it! No matter what happens, I feel very right about making this choice.

If you are interested in reconstruction (even if not sure!), I recommend reading The Breast Reconstruction Guidebook FORCE's publication on Confronting Hereditary Breast and Ovarian Cancer is also very good.

you have to request the log in information to access the.pictures on FORCE

wow we all gave such similar stories it's quite reassuring. I will be scheduling my PBMX w/reconstruction for the end if April 2014 but I'm doing the 3 step route starting with expanders. I'm a scrub nurse & have assisted on many of these surgeries & this is the best outcome. My husband is understanding but doesn't quite agree, he wants or needs a more definite answer that I'll eventually get breast CA or for the surgeon to clearly say "I recommend ur wife having this surgery" all things no good surgeon will say.

Thank you all so much for being so open & honest, I've learned a lot. Prayers & blessings for all.

You are right, no good surgeon will say you are definitely going to get cancer...however, I have found you can get some pretty honest answers if you ask them "if I was your wife, what would you wish for hwe to do". Just a suggestion!

I am sorry your husband does not seem totally behind you...is he maybe worried about you?

Just a couple cents though...the best outcome possible by any certain surgery depends on your body, your surgeon's skills, and a bit of luck. I am not a scrub nurse but I have looked at a lot of reconstructed breasts and I think results with expanders or direct-to-implant can both be very comparable, but the latter definitely needs a surgeon very experienced with doing one-steps and using Alloderm...and you need a suitable canvas to start with. I have truly seen some amazing results with the latter. I do not think any recon is as a rule better than any other, or guarantees better results over another, it really depends on many factors as what might give an individual the best outcome.

By 3-steps...are you including nipple recon in there? 

divecat  yes I'm doing nipple reconstruction. I've been toggling back & forth with doing nipple sparing (because its less down time & only 1 big surgery) but because my breast are a full C & very dense I'm going to stick with skin sparing. I've participated in a lot of these surgeries & you are correct in saying there is no rule it's very individual & the surgeons play a vital role. 

Speaking of surgeons, yes I did the "if I was your wife/daughter etc" to which he replied "I'd tell you to do what you feel is right for you" lol then I tried "ok what if you were in my shoes" he said "but I'm not" lol there was no way I could lock him down into a decision. As for my hubby, he's just worried about my intolerance for pain & how I'm going to handle waking up with such drastic change to my body. I know in my heart everything will be ok.

Ladies,

So much good info here in this topic!  We all seem to have such similar stories.  I had my Prophylactic BMX with tissue expanders on 4 March.  I'm not gonna lie, it has been a rough ride.  I don't think I quite understood how fit and über busy I was before.   The great news is I feel like I am starting to come out the other side.  When my pathology results came back, my doctor said, while you don't have cancer today everything in this report leads me to believe that you will eventually.  That hit home and despite the complications I have had so far, I am sure that it has been really the only move for me to make.  

It seems like there are several ladies who have upcoming surgeries.  Please do yourself a favor and don't spend ever waking moment obsessed with the surgery (like I did .  Enjoy your spring and feel free to ask any questions you have.  

I have had a nipple delay, nipple sparing with tissue expanders. I still have one dreadful drain that continues to produce a ridiculous amount of fluid.  

Best,

FLgirl

I only know of a couple surgeons that do one-step ABOVE the muscle, and have only seen a couple women on here with such a procedure (and they seemed like cases with special circumstances). It is most definitely NOT the recommended procedure for reconstruction with implants, whether you are going through the expansion process or doing direct-to-implant, for many reasons including the stress on the skin, thin tissues, the difficulty of monitoring lumps, higher risk of capsular contracture. If a surgeon offers to do an implant above the muscle in reconstruction I would be asking LOTS of questions about their actual experience in reconstruction, asking for lots of photos, and asking to speak to patients years out from their surgeries.

Most, including the pioneer of the one-step surgery (Dr. Salzberg) do it UNDER the pectoral. I am having Direct-to-Implant and the implant is absolutely going under the muscle. The Alloderm is sewn in as a sling to support the implant from underneath where the muscle would otherwise be "open", it is not a substitute instead of going under the muscle. It also means the pocket required is formed immediately (with tissue expanders the pocket is formed over time).  It is not necessarily more or less painful to do one way over the other (as you can see reading threads of those with expanders). This depends a lot on pain tolerance, size of implant, nerves severed/intact, and so on.

I am not sure chica what you mean by the risk of encapsulating is "none" with TEs...if you mean risk of capsular contracture is none because you do TEs, that is just not true. Any implant being placed means there is a potential of capsular contracture. It is however true that many surgeons, more so those less experienced in one step, prefer expanders as it does give more opportunity to tweak. But, those who are experienced and skilled with one-step can still do this either in 1 or 2 surgeries, while still saving the patient from the expansion process itself (they do revision later in second surgery, but there was no need to do expansion). In my mind, even if I need a revision at a second surgery....I avoided expanders, and I am not "worse off"!

You are definitely correct that nipple sensation is not the goal with this surgery, and sensation is rare (some will retain surface sensation, but sexual sensation, etc is usually gone). It is really purely for cosmetic outcome, and many women also feel mentally reassured by seeing something that looks closer to their native breasts. Surgeons need to be very clear about this with their patients.

This forum has been so informative, yet still I can't figure out what to do!  I've known about my BRCA1+ status since last Nov.  I've had my BSO in January.  I'm 50, was already in menopause, so that went well.  But now it's already the end of March, and I do feel a sense of urgency - maybe that's unrealistic, but I do want to get my PBM done soon.  My mom was first diagnosed at 56 and passed away, sadly, at 68.  That was 14 years ago.  She lost a cousin at 42 to breast/ovarian cancer, among other relatives.  So, what to do?  I've seen 3 ps and 2 br. surgeons.  Two ps do the DIEP - one says I'm a candidate and one says I'm not.  The one that says I'm not, I trust his judgement more due to his reputation.  So, if I do DIEP, I'm considering traveling to NOLA.  But, ugh!  Why do they have to be so far away?  I'm in CA.  I know others can do it, as I mentioned, I've seen two surgeons about that in a city nearby.  But, I figure, if I go that route, I might as well go where so many have had such positive things to say.  My other choice is just go locally and have direct-to-implant surgery - no abdominal scar, no traveling, no tissue expanders=pain, but using Alloderm?  It's kind of unsettling to think about. And I hear about all the complications/discomfort from implants, which makes me want to go with DIEP.  I'm so confused.    And, yes, I obsess about this.  I want to make my decision and move on, although I don't really want to get closer to surgery, either....  I'm scared.  I don't want to do anything, yet I want to do something quickly!  It's so conflicting, I know.  And I know no one can give me the answer, but thanks for letting me vent!

Camomile, I am in the same situation as you.  I however am BRCA neg, but still remain with LCIS/ALH waiting to rear its ugly head.  I am moving in the direction of PBM but honestly, I dont want to do it.  I too am scared, more scared of C than removing my diseased breasts, so onward and upward I go, consulting with my breast surgeon today and going to see about 2 or 3 PSs she deals with.  Then I have an appt with Ashikari and Salzburg, and the infamous Dr. Heerdt and Disa.  By the end of this month I should be able to make a decision, although I feel my decision is made.  I want PBM. 

I recently found out that my family history is significantly stronger than I thought.  Previously, I thought I just had a great grandmother (mother's side) who died of BC; now I find out that my mother has 2 first cousins that had BC, one passed and one survived with BM, and my mother has a third cousin who passed from BC.  Also, I have a first cousin (mother's side) who died from BC at a very young age.  So taking all this into consideration, I feel I've played with fate for too long and I also feel like Im running out of time.

xoxoxoxo

Update: I saw my BS on Tuesday and explained my thoughts to her.  She was not opposed to PBM and also agreed with me that my breast "are trouble" because of the "atypia."  I told her I want my recon to be "direct to implants" with nipple and skin sparring.  Unfortunately, she does not feel I am a candidate for it due to my breasts being a bit droopy.  She did however say that I could have a breast reduction to put the nipples in the correct position and then in 3 months have another surgery for PBM and recon.  Not sure if I would get the DTI recon, but that is what Im thinking and that is what I really want.  Im also thinking if I have to ditch the nipples in order to have the DTI recon then thats what I'll do. 

I have an appt with Dr. Heerdt at MSK on March 24.  Looking forward to hearing what she thinks and then another appt with Dr. Ashikari on March 28.   

eileenj - to request access to the picture forum, you need to send a PM to nowheregirl or lilah.  It's not part of BCO.