I'd love your thoughts, no really, I would

NvrGvsUp

Well. I'm definitely in the driver's seat of this crazy train, I just want to make sure I'm visiting ALL the stops, so to speak, before surgery day. I'm hoping some members will be kind enough to share their views, experiences and advice that helped them arrive at their decisions. So if you're reading this PLEASE keep reading, even though it's self admittedly long winded. (In my defense this is some BIG stuff!! Some of the biggest decisions I've ever had to make and I would reeeeally appreciate your thoughts.)

Uhhhh, let's see. I almost don't know where to start, it's all so much! I guess I, like every other diagnosed person, want to make all the right decisions. As is so commonly posted: yes I agree: everyone has their own journey and everyone has to do what's best for them and no two situations are alike BUT!! How can I possibly know what's best for me when I've only had this DX for 7 or 8 short weeks? How can I make these decisions today that will affect my health and well being the rest of my life? I'm only now getting used to the idea that I even have cancer, let alone use the word.

It may help to note that my son is on the autism spectrum and also suffers from anxiety. His psychiatrist recommended that I don't tell my son or his younger brother about my cancer as mentally, he's too fragile to be expected to manage news like this about his Mom. So, my husband and I keep cancer discussions tucked away and very private. We have only told close family and friends with the caveat that it must be kept private and from our boys at all costs. A few days preceding my surgery we will tell the boys that I have an infection and my Dr is going to help me out with it and keep it very simple and matter of fact, so he doesn't worry and stress. Thankfully, I'm only expected to be in the hospital 1 night and I already have sleepover plans for the boys on that evening, maybe more if needed. Since I won't need chemo or radiation (just Tamoxifen for the next 5 yrs) my family will be spared the additional hardship that those therapies bring. I only hope our plan stays intact and the boys don't find out but that's a whole other animal.

So.... some decisions are clear no brainers for me (of course I've opted for the BMX-cancer can't come back to a breast I don't have) but other decisions have me wrestling pros and cons endlessly till I'm mentally exhausted and mind-numb. There are soooo many sites, soooo many findings, sooo much of everything that it's all too easy to get overwhelmed, quickly. These are some serious, serious decisions to be made and I just can't wrap my head around what's best. I mean, how can I possibly know if I am the type who could go on to live a perfectly happy, flat chested life without breast reconstruction, or if I'd wake up drowning in regret learning that having breasts matters more than I previously thought?? Or what if I hate the expanders? What if they feel like rocks and I can never sleep comfortably again? I haven't experienced any of these options, so how can I know what choice is best for me??? How do I know whether I should have a total hysterectomy (I'm BRCA 2+) or just my ovaries and tubes removed? There's substantial evidence for both sides of the arguement. Should I have my BMX AND reconstruction AND Hysterectomy all taken care if in the same surgery?? How can I know what to do? I have an amazing BS, who I trust and a PS that is top in his field and a highly recommended Onco OBGYN I'm scheduled to meet this week, but at the end of the day, how can I possibly expect them to really know what's best for me when we've only met a handful of times in an office consult that lasts less than a half hour?? I'm a realist and I just can't justify that any of them can even put my name and face together without checking my chart before entering the room to see me. This whole thing is easily conceivable but maddening nonetheless!

That said, I have an amazing group of dear friends who are already rallying behind me with love and support. A blessing of a husband who will undoubtedly love me whichever road I choose and an amazing brother (who I pray doesn't carry the BRCA 2 mutated gene) as well, but to date... none of them have walked this road and contemplated these decisions.

This is why I've come here, with my most sincere hopes to draw from whatever your wiling to share with me. I can't be the only one having these thoughts and feeling this way...right? Tell me you did or do too. Please. What do we do? How do we decide?

If my Mom were still alive, I would pose these exact thoughts to her. The thoughts and questions and concerns that seem to bring me to my knees when I'm weakened with endless questions and doubt.I can't know everything my Mom would tell me, but I know she would lovingly remind me...."sh*t can always be worse"

Cpeachymom

Hi NvrGvsUp, sorry you’re here with us. For what it’s worth, if I were going to have my ovaries removed, I would go for a full hysterectomy because Tamoxifen can cause uterine issues so it’s one less thing to worry about. If you’re worried about hiding all this from your boys, less surgeries would make that easier. And it would be more like one big recovery period since you’ll be laid up for a bit anyway. But choosing no reconstruction now doesn’t mean you can’t change your mind later. Many women have delayed recon.

I’m sure others will chime in with their thoughts. Best of luck to you!

jjsmom1221

Easier said then done, but stop and breathe! You sure are facing a lot but you’re not alone. I’ve been lurking here for 3 weeks and just joined, there are so many people on here going through all the same things, it’s actually helped me so much. This is my 2 nd post, my first was in the before during and after discussion.

I had bilateral mastectomies on 12/15/17 , diagnosed with LCIS in my right breast in April 2017. Subsequent MRI showed 3 masses in the left breast, those biopsies came back negative, I also tested negative for BRACA. I have a huge amount of cancer in my family including my mother and a first cousin with breast cancer, a sister who has passed from renal cell carcinoma and 2 uncles with lung cancer. For me, it was a no brainer, I was not going to go through all this testing and biopsies ever again and with my chances of developing breast cancer higher then most , my decision was easy and I’m glad I did because my pathology report showed that the LCIS was gone from the right breast and the left breast had DCIS which never showed up on the biopsy! I had a hysterectomy years ago and already met with an oncologist who says no chemo or radiation needed.

I know your head is spinning but ultimately the decision is yours and yours alone. There is a lot of great information on here and people who are happy to share their stories and help in any way they can. I wish you all the luck in your journey, keep in touch and let me know what you decid

NvrGvsUp

Thank you for your thoughts Cpeachymom! I can't tell you how much it means. I think I'm leaning towards the full hysterectomy, from the one big surgery stand point but I had no idea the Tamoxifen can cause uterine issues! That's definitely something that sways my decision. Thanks for letting me know. Tamoxifen is my next research topic.

I have considered postponing reconstruction and seeing how I feel when I wake up and see if I can live happily boobless for a while, but I'm a bit of a.chicken when it comes to being put under for surgeries... So, if I did find that I wanted breasts afterall, I don't think I could convince myself to go through another surgery and start at the beginning of the process after healing up. I'd have missed my chance.with the first surgery. I realize I'd have to have 1 final surgery.to swap my expanders for the implants but at that point I'm kinda hoping the PS will give me the "it's too late to turn back now" feel!

PS: I LOVE your quote..."I am the storm"

ElaineTherese

Some thoughts....

...."of course I've opted for the BMX-cancer can't come back to a breast I don't have." Cancer can recur, even if you have a BMX. But, given your BRCA status, I would have opted for the BMX, too, if I were in your shoes.

If you're not doing radiation, you have many options regarding reconstruction. Some women even get reconstruction at the same time as surgery.

I have twins on the autism spectrum, but they also have intellectual disabilities. So, they never really understood the cancer. They did know that something was different about Mommy, like the fact that I was bald sometimes and wore a wig at other times.

I was premenopausal when I was diagnosed. However, I'm doing ovulation suppression + an aromatase inhibitor (Aromasin) instead of Tamoxifen.

((Hugs))

Meshell5324

Hi NvrGvsUp,

Well, you certainly have a ton of positives in your favor. You have a medical team you trust, supportive family/friends and you know you don't need chemo or radiation! So, take a deep breathe, it's sounds like you are covering all your bases and making all your stops.

Here's my bases, I didn't have any genetic mutations, my mamaprint was low risk, my tumor while large (3.5 cm Idc and 1.5 cm DCIS) was a grade 1, I was Highly ER/PR + and Her2 -, lymph nodes negative and no LVI. I have a great team of talented Doctors. Because of all that I choose to do a unilateral mx (keeping the heathy breast)with direct to implant surgery over the pectoral. I didn’t want the muscle cut. I wanted reconstruction but I didn’t want to do another surgery for the exchange. I don’t regret it. In the end I trusted my team and myself. It’s still the scariest thing I’ve ever had to do. Good luck! 🍀

NvrGvsUp

Thank you ElaineTherese for taking.your time to share.with me. You're exactly right, I mispoke. My BS did tell me breast cancer can actually be present in areas other than the breast and after a BMX as well. She said this type of cancer likes the brain,.the lungs, the pancreas, the ovaries, the skin and the prostate in men. Have you heard that too?

And thank you so much for weighing in on what you would've done. It's by far my most favorite part to read! It's nice to have support, don't get me wrong, but it's like gold to have someone in similar shoes tell you what they would do if they were me!!! Someone who has either faced what I'm facing or is currently going through it. It just means the world, atleast to me!! When I talk with friends or family about some of the decisions I'm facing, everyone struggles to be neutral but supportive sighting the obvious, "its my choice" While I appreciate the support, sometimes I really just want to know: what would you do. So thank you for including that!

I am going to ask my PS at Monday's appt if he will place the tissue expanders at the same time as my BMX. I mentioned that to my BS and she said she isn't sure if the PS will be onboard with that since I'm thinking I'd also like to have the hysterectomy performed at the same time as well. BS said PS may be concerned with risk of infection but I've read lots of comments from women who had all 3 done in the same surgery. I'm hoping to hear from other women who had all 3 procedures at the same time. I'm wondering how common that is and how the recovery is.

Sometimes I think our spectrum kiddos are better protected by not fully understanding the entirety of the situation. Kind of a built in safety feature ❤.

I too, am premenopausal and super interested to learn about options other than Tamoxifen. What is ovulation suppression + an aromatase inhibitor (Aromasin)? And what made.you did choose that therapy.over Tamoxifen?

((Hugs))

NvrGvsUp

HI Meshell5324,

Yes, I definitely need to take a deep breathe, the question is how? This whole DX has me scrambling for an 8 week doctorate in BC, when I'm really only at a frustrating BC 101. I can't seem to quench my thirst for more info on all of this. How can I feel confident I'm making educated decisions unless I "leave no leaf left unturned"? And there's an endless supply of leaves!

It's so.true though, I am blessed with positives all around me and I constantly remind myself of that and I couldn't be more grateful. But! It's also VERY comforting to hear that you think I'm on the right path 👍it's priceless feedback from someone who's walked the walk. Thank you for including that, but if.there's anything you think I may have missed,.pleeeease point it out to me.

I'm sooo happy to hear you had direct to implant reconstruction and more.importantly you don't regret it!!.So far, I've had a less than ideal plastic surgery consult. At DX I was sure I wanted implants, until I researched and learned about how I would have to have the exchange surgery afterward and the numerous out patient proceedures to fill them, construct nipples then tattooIng the color on the nipples.etc. Deterred, I researched further and found the TUG Flap Implant, AH HA! This proceedure would use my tissue, arteries and fat from my inmer thighs, which felt waaay more organic and natural to me as opposed to inserting foreign objects into my already weakened chest. Since I knew I wouldn't have enough tissue on my stomach for 2 breasts and I didn't want to lose core muscle function from using and.relocating my ab muscles to support my new breasts, I was sure I'd found the perfect solution for me. Well,.I went to PS consult and he said I actually have more tissue and fat in my abdomen than my thighs so if I still wanted to use my own tissue and fat etc I'd have to opt for.the Diep flap. However, I only.had enough fat and tissue to construct 2 breasts that would end up being 60% smaller than what I naturally have now,.which is a lg B/small C. I couldn't justify a 12 hr surgery and losing all my stomach muscles to end up with scrapped together tissue resulting in awkward looking A cup breasts. So I lost all hope, went home and tried to get used to the idea of living the rest of my life (I'm only 43) with no breasts. A very daunting task. I went back to researchIng and learned about the direct to implant option. Yes!!! Seems like a perfect solution! I can have it done same time as BMX, my chest muscles won't be cut, no further surgeries necessary, no outpatient proceedures to endure and since I don't want bigger size breasts it is a slam dunk! I called BS (since.PS was on vacay) and BS said she doubts PS would recommend that procedure since there is a high rate of necrosis associated with it. She said with implants the process is gradual, which allows more tweaking along the.way to ensure we arrive at a successful and pleasing outcome, one that I would be involved in the entire time. She said the PS has more control over the end result with expanders to implants. I have an appointment with PS on Monday but I'm scared he's going to nix the.direct to implant idea and press on for HIS more.preferred implant: the.expanders to silicon implant. The little.voice in my head says,."it shouldn't be about what HE wants" but at the same.time, it seems a.smarter choice to opt for the procedure that the PS is most confident and comfortable.with right?? I probably stand.to get the best results with a proceedure he likes to perform? And the clock is ticking, I don't exactly have the freedom.to talk to a few more PSs. I'm trying to stay positive with hopes that he will be as excited about this option as I am but I have my reservations. I have a feeling he is going to site: tissue necrosis, the possibility of rippling and increased risk of capuslar contracture. I can tell by the way he delivers the info about associated risks etc as to which procedure he favors...even.though he.assures me that it's my decision and I'm the one who has to decide what's most important to me.

I'm curious, why you chose Saline as opposed to Silicone? Initially I liked the Saline option, as it presents no harm if it's perforated or damaged but PS said the Silicone presents no harm either. He also said.saline implants typically require more."touch up" proceedures, namely to correct rippling. He also said the saline implants have a firmer feel than the silicone implants. Did you get to feel both options before you decided?

I'd also like to.know how you came to learn of the direct to implant option? Did your PS offer it or did you mention it? I read a comment.on another site about how a woman had direct to implant but her PS told her before her surgery how he wouldn't know which size implant he was to going to use until her MX was completed. What was your experience like?

Thank you so much for your time, with every reply I read, I somehow feel a little more prepared and I'm grateful to know your experience, thanks again!

NotVeryBrave

Wow! You have a lot going on! I agree - it's a crazy rush of information with a bunch of head and heart issues. There's just no way to truly know what will be best for you. Probably the best advice I've gotten (besides the usual individual choice stuff) is to just try to not look back or second guess the decisions you do make.

Yes - I would definitely have done the BMX with a positive genetic test. And ovary removal is usually suggested as well then. As far as the uterus - I'd probably leave it if you're not having problems. There are some advantages to retaining your uterus. And I think it would add quite a bit to your surgery to do that as well.

I had direct to implant at the time of the BMX. Lots of advantages - kept skin and nipples, no exchange surgery needed, no disruption of pectoral muscles. My PS told me that it would be his intent, but there was a possibility that I would wake up with TE's. It all depends on how the skin looks after the breast tissue is removed. The most important thing is healthy tissue with good blood flow and minimal strain on the incision line.

I did develop an infection in one breast at 5 weeks post op which is unusual. I was hospitalized for 3 days for IV antibiotics and went home on others by mouth for 2 weeks. No further problems. I also have rippling and fat grafting is recommended by the PS, but the BS would prefer if I wait. It's not that noticeable even in a bathing suit.

I'd advise seeing at least one more PS. You could ask your BS about who does direct to implant. My second opinion BS recommended my PS. I know it can be hard to get all these appointments done and a bit overwhelming, but somehow things just seem more "right" with the right person.

Many women choose to delay reconstruction for many reasons and some never do reconstruct and are happy with their results. Worst case scenario for each: BMX w/o recon - decide you want it later and have to start from scratch with no nipples and TE's or BMX w/ recon and decide you hate it and have it removed.

Of course - we all hope that you'll just be happy with whatever you choose!

ShetlandPony

There is an organization I have seen mentioned somewhere on these discussion boards. It is called FORCE -- Facing Our Risk of Cancer Empowered. It has information and support specifically for people dealing with hereditary breast, ovarian, and related cancers. The BRCA mutation does have bearing on your treatment choices and timing.

http://www.facingourrisk.org/index.php

houmom

I have multiple tumors in one breast, IDC stage 2, grade 1, ER+/PR+/HER2-. I tested negative on all genetic mutations. I knew right away I wanted BMX, there was no doubt in my mind. I also wanted to do direct to implant but the location of my tumors (around the nipple) and the poor quality of my breast skin ruled that option out for me. I was surprised when my PS said I have enough tissue to do a B cup DIEP recon. It will be a longer recovery and I will have more scars to try and take care of, but it feels like the best option for the long term. If I’m honest I was not thrilled about the prospect of having to change out the implants 3-5 times in the future (I’m only 40), and having my own tissue will probably feel more safe.

Axolotl

I had a unilateral skin-sparing mastectomy with immediate reconstruction (silicone implant) about two weeks ago. I was on the fence about reconstruction and still am. I decided to go ahead with it because I was having a unilateral mastectomy and preferred to be even-chested, and I knew I wanted to avoid more surgery later. Honestly, though, I think I would have been happier without reconstruction. It is taking some getting used to. The reconstructed breast doesn't look or feel natural. It sits oddly on my chest and it feels firm. It's slightly larger than the left breast. I don't like that the implant is under my muscle. I worry about the Alloderm. The problem is that if I hadn't had reconstruction I know that I would right now be feeling regretful that I didn't have it. I tell myself I can always have it taken out later if I still don't like it.

If I had had a bilateral mastectomy I would have felt more confident going flat.

I noticed that my bs was strongly in favor of reconstruction - I think she assumed because of my age (37) it was a given that I would want it.

Either with or without reconstruction, I still feel I would feel a sense of loss. I'm happy to have the tumors out, but I didn't sign up for this!

NvrGvsUp

Hi NotVeryBrave,

I wholeheartedly disagree with your user id!! After reading what you've been through, I think your extremely brave!!! And I feel very lucky you've taken the time to share your advice, thoughts and experience with me. It's more.valuable to me.than you probably know and I sincerely thank you!

I've found alot of solace in your words and I think I'm.understanding that maybe the literal right brainer that I am; I'm expecting everything to be concise, black and white, a yes or a no type of situation and it just isn't the case. Maybe it can't be. Makes sense when you say it out loud that there probably is no real way to know what's best for me and all of these decisions are just a leap of faith. To say that.type of leap is out of my comfort zone, would be a severe understatement but I've heard that "life as you know it changes radically after DX"...maybe this is a part of.that change. (Another "Aha moment")

You mentioned advantages to keeping my uterus, it's the first I've heard someone.say to keep it. Most people seem to be in the "remove everything potentially dangerous" camp. I'd love it if you would explain those advantages. I intend on having an in depth conversation with the Onco OBGYN when I meet her this week and gaining her insight and experience but I'd also like to have a partial decision in tow and reasons to support that decision. I can use all the input I can get.

It's so incredibly encouraging to hear about your successful direct to implant experience! The more I read, the more confidence I'm gaining that I too can have a great experience as well.Maybe it isn't out of my realm. Can I ask if you were large or small breasted before your BMX? I'm wondering if smaller or larger breasts fair better for direct to implant? Or doesnt it matter? My BS said it all depends on the condition of my flaps? Also, fat grafting seems much less invasive than an exchange surgery and thats more.good news for this surgery chicken! Is fat grafting and out patient procedure? Do you get to pick where the fat is taken from, the donor site? Do they have to knock you out for fat grafting?

I will give this PS one more chance since I already have an appointment scheduled with him but I know you're right. It's gotta be right to be "right"! My BS already gave me a few of her other favorite PSs that perform skin and nipple sparing reconstructions. Heck! Maybe this PS will refer me.to someone in his office that is better suited for me and the reconstruction I'm wanting. I need to be on the same page as.my PS. It's scary because time is a major.factor as I've postponed this till after the holidays but I don't want to press my luck being fickle. My cancer is stage 1 but its invasive.

Thank you for the kind wishes. And I wish nothing but good things and white light for you 😊

Meshell5324

Wow, I never noticed it said saline implants in my info. I corrected it to silicone. I have a mentor memoryshape- moderateplus profile silicone implant. My PS had to match my healthy side and this was the option she picked. She did tell me why she was picking it and showed me both shaped and rounded. My BS explained about skin necrosis and would have liked me to have TE’s first. I explained my reasoning for wanting the DTI -I didn’t want any muscles cut - I had never had surgery before -ever- I’ve been in the hospital overnight twice- Once for each child- I’m otherwise healthy and in shape and I wanted to wake up whole. So, she listened and referred me to a really talented PS that had extensive experience in TE’s and DTI over the pectoral. My PS said I was a really good candidate for it but she always brought TE’s just in case the skin flap did not have sufficient blood flow. She brought 50 different sizes with her. She totally rocks! She walked me through everything, step by step that she was going to do during the surgery. The plan order was 1st implant over pectoral, 2nd TE over pectoral and last resort implant or TE under the pectoral. I also had a wound vac that suctioned the incision closed. I asked how she would fix things if I did have skin necrosis or rippling. Thankfully I don’t have any rippling so I don’t need fat grafting. I also didn’t have any necrosis. The weird twinges, pulling and tenderness as the nerves reconnect aren’t fun but tolerable. It really doesn’t feel foreign or tight at all. Pretty natural. It’s not a procedure that many PS’s do. There is a thread under breast reconstruction that has a list of surgeons who do Te’s/implant over the pectoral. It has a lot of good information on it and other members experiences with this type of surgery. I really learned during all the crazy first doctors appointments and testing that it was ok to get second opinions. It’s ok to switch surgeons. No ones feelings are going to get hurt.

NotVeryBrave

I think you sound a lot like me! I tend to research things to death and become somewhat paralyzed with making decisions if I'm not 100% sure. Of course - in this shit show - there is no 100% ever! We do the best we can. Sometimes it just becomes "what do I think I can live with better" to make up your mind.

I guess I'm thinking primarily that having your uterus is helpful from a structural aspect. My SIL had hers removed as part of a bladder cancer surgery and has since had a vaginal prolapse. It would also add quite a bit to the surgery you're getting. I'd be sure to ask about any disadvantages.

I was wearing a 36B bra and probably should have been in a 34C. I'm now wearing a 32E. I was kind of pissed to end up bigger (male PS), but now realize that I don't really look bigger. It's mostly that the implants are wider at the base. It seems like it's generally better if you're not too big.

Fat grafting is out patient, but they do put you out. My BMX was actually considered outpatient even though they kept me overnight. Weird. I'm sure they take into consideration what areas you'd like the fat harvested from. There are some "rules" about how much they can take before it becomes a cosmetic surgery and isn't covered. Also - people tend to have some of it die and can need another round possibly.

In response to some other posts: I wasn't too thrilled about having "foreign" implants in my body or needing the Alloderm, but it's been okay. I also had no interest in taking another part of my body to make a fake breast, but I am somewhat envious of the "natural" part of that. Implants do not have to be replaced as often as people believe. While they do have warranties of maybe 10 years, it's not like they expire or anything. An MRI is recommended at 3 years post placement and then every 2 years to watch integrity. And it's much easier for a PS to get an even result if you have a BMX than to match a native breast.

NvrGvsUp

Hi Shetlandpony,

Thanks very much for the link to F.O.R.C.E.. I am headed there today for more info and advice 😊

HollyDollyD

On the reconstruction front, if you don't want it now, you can always do it later. Some women like flat, others like flat with prosthetics and others want reconstruction.

ElaineTherese

RE: ovulation suppression + AI as an alternative to Tamoxifen -- If you're getting your ovaries removed, you won't need the ovulation suppression. I'm doing OS + AI because the SOFT study showed that it is somewhat more effective than Tamoxifen for younger women. Also, I was Stage IIIA with an aggressive form of breast cancer, and was looking to reduce my chances of recurrence any way I could.

Of course, both Tamoxifen and the AIs have their side effects, so some women just take the med they can best tolerate.

lrwells50

If you aren’t sure about reconstruction, it can always be done later. I had a BMX, and thought long and hard about going flat, but decided I wouldn’t be comfortable with it. I’m overweight, and my PS wanted to do a lat flap procedure, but I wasn’t comfortable with that, so I have Mentor medium height, high profile, 685 cc implants. I wear prosthetics to get my breasts a little bit larger than my stomach, but think if I’d lose weight the size would be just right.

You’ll read about a lot of people having problems with tissue expanders, but not everyone does. I had no problems at all with mine, and the exchange surgery was outpatient.

Good luck with your decision. I think my age made it so much easier for me to make decisions. I really feel for you with children at home. My niece was diagnosed with an aggressive triple positive IDC last fall, and finished chemo, radiation, and DIEPexchange surgery just after Christmas.

NvrGvsUp

Hi Houmom,

Wow! We were dx'd about the same time! You sound like you have waaaay more of it thought out and mentally together. How did you manage that?? I'm still striving to get comfortable with what's about to happen and the choices available.

It sucks you couldn't have the DTI you wanted! I don't know how you felt but I felt screwed when my PS said I couldn't have the recon (TUG Flap) I'd already set my mind on. I kinda feel like I keep being sent back to the drawing board!! I'm also curious:did your PS offer ALL of the recon options? Also, how did your PS determine the condition of your skin was unfavorable for DTI before your BMX?? What makes for good skin?? I'm hoping my skin is "good".

At my 1st (and only, so far) appt with my PS, I walked in confident and armed with research for my choice of the TUG. I told him my reasons (being too scared of the surgeries and procedures required to have implants, the cutting of my pectoral muscle etc) and he didnt say anything!!! (I didn't even really know there were other options available until I came home and "went back to the drawing board" researching with little hope). He never went over what else we could do. Now I'm sitting here saying: wth? He basically made me feel like I only had 2 choices: silicone implants or nothing! It's strange too because my BS said my tumor is closer to my chest wall so she can make my incision under my breast and save my skin and nipples. And I told him that!!! Seems like it was the perfect.opportunity for him to mention other options!

After hearing from all of you here, I'm concerned my PS isn't as interested in my concerns or my level of comfort. Tomorrow's appt will be very different as I now know other PS experiences! If he doesn't convince me that he's on the same page, I'm definitely going to someone else. I just hope they can see me soon so I can get this surgery scheduled and over with! At this point, I feel like I'm in need of the perfect dress for tomorrow's ball and I'm racing around last minute shopping!

When is your surgery scheduled?

muska

@ houmom

Where does the information about having to replace implants 3- 5 times come from? Modern silicone implants easily last 20-30 years. Of course things might happen but this is not the same as saying they have to be replaced every 10 years - no, they don't have to be replaced unless there is an issue. One might have many issues including permeant ones from tissue reconstruction too. None of of the options is risk free.

@ OP

I am sorry you have to face this disease and make treatment decisions while raising young children. I hope your surgery confirms your original diagnosis but one cannot be 100% sure whether chemo and radiation would be needed until the surgery pathology results are available. Coming from someone who went into surgery with stage IA clinical diagnosis and woke up as at least stage III. Not to alarm you but my recommendation is to take it one step at a time.

Also, I wouldn't do three surgeries at the same time even if I were offered that option. Nipple sparing BMX with immediate reconstruction w expanders takes over 8 hours and you come out of it pretty sore and with temporarily limited range of motion. I wouldn't want to have hysterectomy at the same time and deal with a whole hue of other recovery issues at the same time.

Best

Lula73

NvrGvsUp- you've got a lot to consider. One thing I will point out especially before you go see the next PS is that these surgeons typically only discuss the procedures they do. If you bring up a procedure they don't do they will often brush it off, tell you that you don't qualify or that it's not right for you then re-offer/tell you the procedures they can do as your recon options. My advice with the new doc is to go in and ask him what types of recon he does and what he'd recommend for you. You mentioned natural tissue recon in a post-if you haven't already checked whether this new guy does them and you're thinking you might want to go that route then see if he does. If not, do not rely on his opinion of whether or not you're a candidate for natural tissue recon. He has no vested interest in it. At that point make an appointment with a PS that does natural tissue recon and see what they recommend. They will evaluate your various “tissue donor sites" and let you know what type of natural tissue recon would work best for you. I had BMX with immediate DIEP recon. I traveled to NOLA for it and would do it again in a heartbeat. I tested positive for a different gene mutation than BRCA that raised my risk for ovarian cancer plus there's family history too. I had laparoscopic assisted vaginal hysterectomy including ovaries and tubes. That was a very easy surgery (at least for me) and would choose that option again as well. It is difficult to decide when you have no experience/frame of reference when it comes to recon. I personally wanted the recon that would get me as close to how my original breasts breasts felt (warm, soft, moves with me) and a natural look. That is what i am familiar with-how my original breasts feel. DIEP flap gave me that.

NvrGvsUp

Hi NotVeryBrave,

Yes Exactly!! Ty for identifying with my research neurosis lol! I DO research things to death then struggle making the decisions. Yep, that's me!

I am going to ask the Onco OBGYN about the risk of vaginal prolapse as well as her opinion of the pros and cons for me for each procedure. I've never heard of vag pro. and wouldn't have known to ask, so thx! (I'll also be googling it to make sure the Doc is on her game 😉)

I'm hoping you're right and DTI yields better results for average sized and smaller breasts. (Another thing i'll be asking PS tomorrow 👍) Was your recon goal to regain your former breast size and the PS called an audible mid surgery? Had you decided on one size implant Pre opp only to wake up with a different one. I breastfed both my boys and my boobs have lacked luster since. So I am looking forward to regaining volume but I don't want to wake up with stripper snow globe boobs! (My PS is male also 😨) Since you said PSs have an advantage when constructing 2 breasts instead of one, atleast I'm less worried about them matching now. Finally! Some good news!

As for DTI and fat grafting, i'm wondering if there's anything I can do Pre opp to increase my odds for tissue and fat suvival? Like, are there super foods or drinks I should be including in my diet so I can be a leg up on all of this? Should I be massaging them till surgery to increase blood flow there??? Or somehow stretching them? Lol

What on earth is an implant warranty? Does it guarantee satisfaction? Is it like a vehicular warranty covering parts and labor for the first 10 yrs?

And!! I didn't know I would need future MRIs. What?! I thought that was an advantage if the BMX?? I thought after BMX and Recon I wouldn't need mamms or MRI's any longer... hmmmm. Wonder how long the 3 and 5 yr "check up MRIs" take? And will they require an IV? I HATE IVs! Aye yi YI!!

NvrGvsUp

Thanks ElaineTherese,

I am going to research AL and also ask my BS if its a better option for me over the Tamoxifen.

Did you try the Tamoxifen and then switch due to side effects?

NvrGvsUp

Hi HollyDollyD,

I'm a surgery scaredy cat. I want to choose the recon path that has the least surgeries with the best results. If I postpone recon, I'm likely to be too fearful to go back for surgery to place the TEs and start from scratch. Plus, I don't know the statute of limitations my insurance has for reconstruction. I wonder how long of a window do I have to decide? And when would I have to have the surgery by?

NvrGvsUp

Hi Irwells50,

So glad you stuck to your guns and brushed off the lat flap procedure you didn't want. It can be hard to decide what to do and then to find your voice to support your conviction. Well done you, very inspiring!

At this point, I feel very limited in my options. I'm really hoping PS gets behind my wishes to have DTI OVER my pectoral muscle as TEs and future surgeries are my last choice. I try to tell myself if TEs are my only choice, atleast I can hold the reins a bit when it comes to size/volume/fullness. Or I think I will be able to. Either way, armed with all the advice and experience I've received here, I feel so.much better about meeting with my PS tomorrow. Boy will he be suprised at how much more I know now! I hope he feels busted for not offering me more options in our 1st consult! I will be asking why he didn't!

It's very comforting to hear you had no problems with your TEs 😊. Refreshing to hear! I remember after having my 1st son thinking to myself, "what do all those ladies mean pregnancy and labor/child birth is so hard?" I didn't have any problems whatsoever! So I know it's possible to be the exception and It's nice to be reminded of exceptions!

Can I ask what size bra you were Pre MX? I don't understand yet what ccs mean in terms of size. The reason I'm asking is I'm trying to determine if having TEs is an easier experience for smaller or larger breasted women? Like if you were larger breasted before it would kinda make sense that TEs might not be so shocking to your body as it was formerly accustomed to having a large breasts there. I don't know if there's any possibility of that but I'm interested to hear of experiences. Maybe size is not an issue at all and it really is a case by case difference, but I'd still like to hear other experiences.

How long was your recovery after your exchange surgery? (I was shocked to hear it was outpatient 😨!) Seems like a lady would need to be under a Dr.'s care after having her breasts cut open AGAIN, then yanked out (for lack of a better word) then re-stuffed and sewn back up! Sheeesh!! How long would you say it took for you to feel fully functional and able to resume your daily activities?

I'm sorry to hear about your niece but she must be very strong willed and brave to have gone through so much! I wish you (and.your niece) all the best and I want to thank you for sharing your experience with me. Though our ages aren't the same, our willingness to help someone else is ❤

NvrGvsUp

YIkes Muska!!! 😨😨😨

You went into surgery with a clinical stage 1a dx? Did you have biopsies?? I did and I thought that the samples taken and sent to path were what determined which stage my cancer was in. Am I wrong?

How scary to wake up with even worse news! I'm so sorry that happened to you. I can't imagine how I'd feel if that happened to me 😨! For now I can't and won't allow my body, mind or soul to think I have anything other than what's been explained to me. Solely for positive energy purposes that have always helped to heal me when i've needed it 😉 👍

How long did the "temporary limited range of motion" last for you? Were you very active before? How long were you "sore" after your BMX and TEs placement?

While I'm super frightened about the pain I'll feel when I wake, I figure it'll be too late to do anything but get better. As in: it's all upwards from.here. Knowing my boys will be seeing me, I will swallow any signs of pain to protect them. It'll be a great motivator to heal quickly, not.just for me but for them too. I know me and i'm afraid if I spread the surgeries out, I'm likely to chicken out. Besides, I've always been a multitasker, a "1 stop shop", "3 birds with 1 stone" kinda girl. I see your point of view and reasonIng to space them out but I'm afraid I'm not that brave. While disappointing and unfortunate, it's true. I have no clue about how painful after surgery pain is, let alone multiple surgeries - I've only ever had an outpatient tubal ligation and spent 1 night in a hospital after the birth of my 2nd son - both were a breeze! I'm trusting that my lack of experience and fear will carry me into surgery. After I wake, I may be writing you back, acknowledgIng your advice. But for now, i'm banking on my one-time "I didn't know any better" card.

Thanks so much for weighing in and sharing your thoughts with me Muska. I'm so grateful to continue to be blessed with good spirits surrounding me ❤ I look.forward to your responses 😊

NvrGvsUp

Hi Lula73,

You know, now that I read your post, that's exactly what happened with my PS. I went in wanting a tissue recon and left thinking silicone implants were my only recon option. Looking back, it was probably a bad idea to expect the PS to educate me on options. A rookie mistake and one I'll be sure I don't make again. You're a 100% right, surgeons have no vested interest, they probably see a new convertible or a carribean vacation when we walk in. I'll be taking your advise and taking charge of my.reconstruction education.

It's so great to hear your not only happy with your DIEP, you'd "do it again in a heartbeat!" That's how it should be and I hope it will be for me too with whatever I decide. Is it true that you lose all your core muscle with a DIEP? Is it true you can never do a sit up or a stomach crunch after a DIEP?

Promising to hear your hysterectomy went so smoothly that you describe it as "easy". Did you have it at the time of.your BMX/recon surgery?

Like you, I want a recon that feels and resembles my current breasts. Or as close as possible but I fear I'm expected too much. I just don't want to end up with a recon like the scary ones I've seen online where they.look like the surgeon sneezed or something during of the surgery. Some of them look so bad! So much so, that I would choose no recon over those Frankenstein-ish chop jobs! Yikes 😨!

All of this is such a vast sea of info and like you said, with no frame of reference, it's so easy to drown in all of it. I can't even express how responses like yours have helped.me! Thank you for reading my post and responding with such valuable advice and your success story! I will remember your words as I continue on my BC journey 😉

lrwells50

NvrGvsUp,

I was a 42G pre BMX, so i never wanted to be that big again, with all of the accompanying back pain, etc. My PS, who according to my MO is one of Baylor’s best, was probably correct about me needing the flap to match my “body type” which is fat, but I’m old enough to not care too much about that. I was hoping they could put in larger implants, but I would have needed the flap to support that. I was hoping after the surgery, I could go braless, but he said I should wear a bra, because there is weight to the implants, and they would stretch my skin. Since I’m wearing a bra anyway, I added some inserts, and am fine with it.

I didn’t have much pain after the exchange surgery either, as they used the Exparel again - I’m a big fan. The pain was a little different, would hurt the first couple of days when I bent over, which I think was due to the liposuction they did to shape the breast.

I think the thing that will be hardest after the BMX will be getting in and out of bed, since you can’t push up with your arms. Luckily we have a bed that raises and lowers the head, so I didn’t have any trouble with that. I’ve had 2 c-sections, a hysterectomy and a knee replacement before the BMX, so surgery doesn’t terrify me. I personally wouldn’t do the hysterectomy at the same time, but that’s me. I had it done because of inter- uterine tumors, which were too big to do it vaginally, so abdominal surgery was necessary. I don’t know how or if that would interfere with DIEP flap surgery.

Immediate reconstruction is not available for overweight women, so it’s not something I considered.

Good luck with your decision. If you elect to have flap surgery, make sure you see pictures of his work, and don’t just settle for someone your insurance will reimburse the most for. Flap surgery requires micro surgery skills, so get recommendations from women who have used him/her

ElaineTherese

RE: Tamoxifen -- No, I never took it. I just started with an aromatase inhibitor. Some of the side effects are similar, like mood swings, hot flashes, and night sweats. AIs are more likely to produce joint pain, though I haven't had much of that.

RE: Staging -- Until surgery, staging is a guesstimate. Ultrasound sizing isn't always accurate, so you have to wait for removal to figure out the lump's true size. Scans don't always show nodal involvement either; that's why your surgeon will remove your sentinel nodes. Of course, some of us do chemo before surgery and will never know our "true stage."

Sara536

NvrGvsUp,

Let me borrow your name for a minute...

NEVER GIVE UP YOUR UTERUS unless there is very good reason. (unless you don't care about the quality of your orgasms) I gave mine up during surgery for pelvic floor prolapse and am very sorry. There were alternative surgeries available since my uterus was healthy. I did ask ahead if I would still be able to have an orgasm and my surgeon said yes. True, but it does drastically effect the quality. I think that most women probably enjoy the uterine contractions during and after an orgasm. You would be kissing that part goodbye for sure. I think the uterine contractions may also be responsible for helping to clear out all the blood that rushes in to the “O" party. Without the contractions, you can have a very uncomfortable congested feeling for quite a while after. Yes, you can still have a pleasurable, but short, cliteral orgasm so if your uterus is diseased, by all means let it go. But I say, Why fix what ain't broke? I think it borders on malpractice to remove healthy organs for possible future convenience. I am upet that this problem did not occur to my female surgeon, but I guess surgeons are just very narrowly focused! Not to mention the many thousands of extra $ for throwing in a hysterectomy where it is not needed. Sorry if this is TMI that you didn't ask for. Think about every part of your planned surgery very carefully, make sure your questions are answered, and actually read everything you sign. No need to rush so much. Best of luck to you.

PS: This is also something to consider when choosing between Aromatase Inhibitors and Tamoxifen. I don't know your age or if you plan on having more children, but Tamoxifen seems to be the one that can cause uterine cancer. Some choose oophectomy in order to avoid Tamoxifen or hysterectomy.