My Decision

jenjenl

Hello - I am not exactly sure the point of my post maybe it's just a public announcement or maybe someone else is stuggling like I was.  I had a UMX in November 2012 - I had wanted to do a BMX but my surgeon proposed that I hold onto Lefty for a few reasons a) to recover quicker to start chemo and b) to help with recon down the road.  Surgery went fine but I did have Axillary cording pretty bad and completed 2 months of PT to be able to have 95% ROM.  I still have tenderness around my incision, the back of my arm and on my back near my shoulder.  I found out 3 days after my surgery that I am BRCA1+. 

As I progressed through chemo (done now...can I get a hell yeah!?!?) I started to explore reconstruction.  Every time I talked to a PS I cried and cried, this decision is not easy - I don't particularly care for any of the options.  The only decision that I come to and I don't cry is to remove my left breast and be flat.  I am small busted, I know what to do to turn my DH on and it's doesn't have anything to do with my boobs.  I have talked to my DH many times - I know he loves ME and he supports me.  He is of the camp remove as many points of risk as we can and enjoy life.  I am having a hysterectomy next Monday.

I am very anxious to remove my left breast, she scares me that something is brewing...like I am a ticking time bomb.  I have very few friends or family that understand my decision, they support me but don't necessarily understand why I don't want to do reconstruction.  I will never say never but I know now is not the time for me.  I can't wait to be free of plans and surgeries.

I didn't come to this decision overnight so I know it's not a knee-jerk reaction but I suppose I just want some reassurance.

Jen

farmerlucy

Jen - I understand you completely! If that is what is in your heart follow it. You are not making a final decision. You could change your mind down the road anyway, not that you will. I think it would be freeing to be breast free! I'd planned on it, but hubby and DD talked me out of it.

Also, did you know that there are studies going on now, where BRCA women may be able to have their tubes removed, leaving the ovaries for a few more years since ovarian cancer typically strikes at a later age. Here is a link to one such articlehttp://www.coloradocancerblogs.org/take-the-tubes-but-leave-the-ovaries-salpingectomy-an-evolving-option-for-young-women-at-high-risk-for-gynecologic-cancers/

Just FYI. I know you already have your plans in place.

Bless you baby girl.

Ariom

Hello Jenn,

It's a hard place that you are in. Just thought I would say hi, Farmerlucy has given you great advice.

I had a Umx too, and have decided not to reconstruct. I figure it would be easier to be totally breast free, but I was talked out of it too. I now have no desire to lose the other side.

My surgeon told me I could always reconstruct later, but for whatever reason, I have no problem with being flat on that side, and I also like my scar. I have never felt disfigured, and I feel strangely empowered by it.

There are so many decisions, so much to think about. Just take your time, lean on that man of yours, and listen to your intuition. You'll make the right choice for you.

Take care, and let us know how you are doing. 

urbanfarmer

Hi Jen.

I had a BMX April 19, 2012. Had 2 masses in my right breast, it was my decision to have the left one done as well. I chose no reconstruction. 38 lymph nodes were removed at the time, so I have some issues with the site.

When I got the path report, they had found a small tumour in the left breast that had not shown up on the mammo. They suspect it was also a primary. All the cancer is lobular, it tends to hide. So glad I went for both! 

I live perfectly happy flat and free, if anyone notices they never say anything. I wear whatever I want. I also had the complete hyst. Can't imagine having surgery that wasn't absolutely necessary!

Good luck making your decision. Do what's right for YOU. We understand and will support you.

Wren44

Hooray for finishing chemo! I'll bet you don't miss it at all. Nothing I've read about the reconstruction process has made me want to reconstruct. I'm a UMX, but would not hesitate to get rid of the other one as well - and still not reconstruct. There's a non profit website run by a member here: breastfree.org. There's also a facebook group flat and fabulous. You know what is best for you and you're the one who has to live with your decision. Don't worry about what other people think.

bobogirl

Hey there Jen:

All good advice you're getting here from our sisters.  Just wanted to let you know there are several threads here that exist to support women who choose BMX without recon.  One of them, started by MT1, is called something like 'I look for flat chested women.  A rant.'  Another, started by me, is 'New and future flat sister, with questions.'  And there are many others, I'm sure.

Please keep in touch, and feel welcome to PM if you need more support.

Hugs,

Bobogirl

Linda-n3

Jen, I also opted for no reconstruction, like many women here. And this decision does not have to be final, you can wait to see if you want to reconstruct at a later date.  However, if you tell the BS you are considering later reconstruction, you may end up with extra skin tags that are preserved "in case" you want reconstruction later, which for some is very uncomfortable and ugly, so be sure to discuss this BEFORE surgery.

Please join the group at "I look for flatchested women: a rant" to get an idea of why many of us chose flat rather than reconstruction, and we all have the option of prostheses or not, depending on our own individual circumstances. There are several other threads on how to dress with and without prostheses.

I will have to say that I have not run across ANY posts from women who wish they had gone for immediate reconstruction or reconstruction very soon, but I have run across LOTS of posts from women who wish they had waited, delayed decision, and many from women who have had so many complications and pain that they wish they had chosen no reconstruction. And to be fair, there are many women who truly want to have curves where they had breasts and are very happy with their reconstructions.

Best wishes.

Chloe2

jenjenl I am having the same feelings. I had a lumpectomy 3/14 and have had some complications. Tired of being in pain. I am awaiting brca results and the rec is for me to have a BMX if positive. My oncology surgeon suggested I meet with a PS. I did all me research, met with him and do not feel any better about it. I read about the procedures, the expander pain, the additional surgery, and I cry. I am allergic to nearly all antibiotics, become very ill with muscle relaxers, and cannot take several pain killers. I worry about getting thru it. My husband is supportive of whatever I choose if I need to make the choice. I am so torn. I am not an indecisive person and yet I am all over the map on this one. people including Dr's assume we will want reconstruction. I am just not sure it is right for me....

crystalphm

I had one breast removed 3 years ago, dealt with cancer, and healed. Then 18 months later, 3 spots showed up on a MRI and I *needed* that second breast gone. They did a MRI assisted biopsy and when the results came back inconclusive, I nearly lost my mind...I needed that breast gone because as you say, she was up to no good.

They removed my second breast a year ago, no cancer, only pre-cancer. I am thrilled I doid not have cancer a second time, and satisfied to have the worry gone.

I did not have reconstruction, there are alot of boards here you could peek into to see how women are coping. I just needed to be done, I needed to be away from all of the medical stuff. We all have to educate ourselves to decide what works best.

I can't say I am happy being flat, geez, I would have been happy to not get breast cancer. But I am flat, most days I rock the flat look with fun clothing, jewelry...and I have boobs in a box I can put on if I need to feel them on me.

Fighting the cancer is foremost important, then the rest is just deciding how you want to live.  

PamelaKay

JenJenl, I understand your decision and support your need to make the choice that is right for you. We all have reasons and feelings that no amount of outside pressure can change. 

I, too, struggled internally with the decisions of bi or unilateral mx and reconstruction. If you want to read some of what went into my thinking at the time, I wrote an essay (included in the description of my pre-surgery ceremony in the surgery forum; just search for "Phoenix rising" and my name; the essay is about half way down the post) about it. For me, I got the results of my BRCA before surgery (negative), so it was an easy decision to keep the breast that was unaffected (but I think if it had been positive, I still would have opted to keep the "good" side, at least until I had a chance to learn more and process the information). The truly hard decision for me was reconstruction. I was advised by surgeons that the best results would be to do the tissue expander during the mastectomy. Not wanting to have any more done than absolutely necessary, I chose not to have a TE put in the left side but not have any recon done to the right side to make it match. Time will tell if I chose the right path. 

Right now, I am dealing with an incision that opened up (seems to be on the mend; my first fill will be next week) and the discomfort of the TE. I'm getting used to it, but it does cause minor discomfort if it gets bumped or pressed. I'm also a bit concerned about the delay that will be caused by having to deal with thyroid surgeries after I'm done with the main chemo in the fall. 

Creative use of scarves and clothes have helped to disguise the unevenness so far. Not sure what I'll do come the summer and warm weather. Some part of me wishes I could be brave enough to be like those who are UMX and don't choose to wear a prosthesis. Maybe that is where I'll end up at some point.

A few weeks ago, when my incision opened up, the PS made a remark to the effect that I would be devistated if I lost the implant. After thinking about it, I realized that I really wouldn't be sad at all if the implant didn't work out.  I know that however this turns out, I'll find a way to make it work for me. 

JenJenl, thanks for bringing this up and giving me a chance to revisit this and share some of my thinking with others. You said it best in your topic: "My Decision".

My heart goes out to you and other BRCA positive women for all the hard decisions you must face in your lives. I'll share with you my motto for the year: "If you're going through hell, just keep walking."